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Avery turned 8 on Friday! Wishing him a belated birthday 🎂 He has total colonic Hirschsprung's but it doing well and looking so handsome in his Holiday attire! Go Avery! 💙
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#hopeforHD #HDawareness #hirschsprungdisease #HD #shithappens #reachhd #digitalhealth #doctors20 #raredisease #raiseawareness #raiseawareeness #raredisease
Chronic illness confessions 🗣 thank you @iamcaro____ 💛! • 📷: @jacobingle #chronicloveclub
Chronic illness confessions 🗣 thank you @iamcaro____ 💛! • 📷: @jacobingle #chronicloveclub 
Amyloidosis is a group of diseases in which abnormal protein, known as amyloid fibrils, builds up in tissue. Symptoms depend on the type and are often variable. They may include diarrhea, weight loss, feeling tired, enlargement of the tongue, bleeding, numbness, feeling faint with standing, swelling of the legs, or enlargement of the spleen

follow @med_healthtips @medcine_flashcards#medicine #medicinestudent #medicalflashcards #revisemedicine #doctors #pathology #pharmacology #microbiology #MBBS #FOODHEALTH #likes #likesforlikesback #comment4comment #pharm #medschool #medstudentlife #infection #ear #pediatrics #amyloidosis #path #infection #symptoms #cure #diseases #raredisease
Amyloidosis is a group of diseases in which abnormal protein, known as amyloid fibrils, builds up in tissue. Symptoms depend on the type and are often variable. They may include diarrhea, weight loss, feeling tired, enlargement of the tongue, bleeding, numbness, feeling faint with standing, swelling of the legs, or enlargement of the spleen follow @med_healthtips @medcine_flashcards#medicine  #medicinestudent  #medicalflashcards  #revisemedicine  #doctors  #pathology  #pharmacology  #microbiology  #MBBS  #FOODHEALTH  #likes  #likesforlikesback  #comment4comment  #pharm  #medschool  #medstudentlife  #infection  #ear  #pediatrics  #amyloidosis  #path  #infection  #symptoms  #cure  #diseases  #raredisease 
Please don't get on my nerves, they have enough to deal with already. .
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The cause of Complex Regional Pain Syndrome (CRPS) is unknown,  however,  it is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems. . .
Given the constant and excessive pain that most of us experience we don't need any extra stress.
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 So please, don't give us any extra reason to get cranky or irritable. 😉😁 .
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#DontGetOnMyNerves #NoStressPlease #BeNice #CRPS #CRPSstrong #RSD #CRPScharityAus #CRPScharity #AMPS #Nerves #NervePain #ChronicPain #CRPSwarrior #BuringForACure #InvisibleIllness #RareDisease #Rareillness #SpoonieLife #StrongerTogether #UnitedWeStand #CRPSreallyGetsOnMyNerves #CRPSnetworkaus #YourCRPSna
Please don't get on my nerves, they have enough to deal with already. . . The cause of Complex Regional Pain Syndrome (CRPS) is unknown, however, it is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems. . . Given the constant and excessive pain that most of us experience we don't need any extra stress. . . So please, don't give us any extra reason to get cranky or irritable. 😉😁 . . #DontGetOnMyNerves  #NoStressPlease  #BeNice  #CRPS  #CRPSstrong  #RSD  #CRPScharityAus  #CRPScharity  #AMPS  #Nerves  #NervePain  #ChronicPain  #CRPSwarrior  #BuringForACure  #InvisibleIllness  #RareDisease  #Rareillness  #SpoonieLife  #StrongerTogether  #UnitedWeStand  #CRPSreallyGetsOnMyNerves  #CRPSnetworkaus  #YourCRPSna 
We continue our 12 Days of Giving with Erinne and her mom, Suzanne. Erinne has endured a lot, including an unexpected seizure and months of hospitalizations this year. With a disease like SMA, families are constantly hit with the sudden and many unplanned expenses. Thanks to our incredible donors, we were able to send a grant to them and immediately help get their van lift up and running again.
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{SMA Community Grant} #34: Erinne Williams, Michigan -- Lift Repair. "Our van lift broke suddenly with Erinne stuck inside. It is our only vehicle and way to transport Erinne to school, doctor's appointments, and fun. I was told it was going to cost over $2000 to get the lift fixed. With taking care of Erinne full time, we live on ½ a shoestring budget and don’t have the money for even 1/10 of this. We do not have mass-transit here in suburban Detroit so Erinne is stuck at home. Your support has changed everything for us! This made me ill worrying about it and you have lifted a huge weight off my shoulders! Thank you. Thank you.”
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Learn more about our support grants, apply, or donate to continue our efforts to help narrow the financial hardships of uncovered but essential expenses >> www.GSFgrants.com

#SMACommunityGrants #12DaysofGiving #ThisisSMA #myNeverGiveUp
We continue our 12 Days of Giving with Erinne and her mom, Suzanne. Erinne has endured a lot, including an unexpected seizure and months of hospitalizations this year. With a disease like SMA, families are constantly hit with the sudden and many unplanned expenses. Thanks to our incredible donors, we were able to send a grant to them and immediately help get their van lift up and running again. . {SMA Community Grant} #34 : Erinne Williams, Michigan -- Lift Repair. "Our van lift broke suddenly with Erinne stuck inside. It is our only vehicle and way to transport Erinne to school, doctor's appointments, and fun. I was told it was going to cost over $2000 to get the lift fixed. With taking care of Erinne full time, we live on ½ a shoestring budget and don’t have the money for even 1/10 of this. We do not have mass-transit here in suburban Detroit so Erinne is stuck at home. Your support has changed everything for us! This made me ill worrying about it and you have lifted a huge weight off my shoulders! Thank you. Thank you.” . Learn more about our support grants, apply, or donate to continue our efforts to help narrow the financial hardships of uncovered but essential expenses >> www.GSFgrants.com #SMACommunityGrants  #12DaysofGiving  #ThisisSMA  #myNeverGiveUp 
Morning Epsom salt soak, courtesy of my claw foot tub, with a chai tea in my favorite-ever mug, courtesy of the supremely talented @ayumihorie.
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That snow shoveling really did a number on me! I rested the remainder of the day and slept 11 hours, and I’m still feeling it.
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I’ve been doing so much better over the last few months, though I couldn’t tell you why. LDN? Gabapentin? CBD oil? Who knows what’s made the difference, but I’ll take it. When I was shoveling snow yesterday I felt almost like pre-illness me, when I lived in Boston and shoveling snow was a competitive sport. But a few things tipped me off that this is not then: I shoveled a lot less snow yesterday than a typical day in Boston, and instead of going about my busy grad school life afterwards, I lay in a heap on my sofa for a million hours. I may feel a lot better, but I still have #eds, I’m still disabled, and I still need to plan accordingly. So today means lots of rest (and celebrating my incredible mom’s birthday!!!! Yay!!!).
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Have any of you had to remind yourselves that you’re still ill during a period of better health? I know feeling better makes the inevitable next flare feel even worse.
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[image description: legs stretched out in a full bathtub with a beautiful goat mug for company.]
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#ehlersdanlossyndrome #ehlersdanlos #chronicillness #chronicpain #dysautonomia #raredisease #mastcellactivationsyndrome #mastcellactivationdisorder #mastcell #mcas #mcad #posturalorthostatictachycardiasyndrome #pots #potsie #selfcare #chronicbabe #butyoudontlooksick
Morning Epsom salt soak, courtesy of my claw foot tub, with a chai tea in my favorite-ever mug, courtesy of the supremely talented @ayumihorie. • That snow shoveling really did a number on me! I rested the remainder of the day and slept 11 hours, and I’m still feeling it. • I’ve been doing so much better over the last few months, though I couldn’t tell you why. LDN? Gabapentin? CBD oil? Who knows what’s made the difference, but I’ll take it. When I was shoveling snow yesterday I felt almost like pre-illness me, when I lived in Boston and shoveling snow was a competitive sport. But a few things tipped me off that this is not then: I shoveled a lot less snow yesterday than a typical day in Boston, and instead of going about my busy grad school life afterwards, I lay in a heap on my sofa for a million hours. I may feel a lot better, but I still have #eds , I’m still disabled, and I still need to plan accordingly. So today means lots of rest (and celebrating my incredible mom’s birthday!!!! Yay!!!). • Have any of you had to remind yourselves that you’re still ill during a period of better health? I know feeling better makes the inevitable next flare feel even worse. • • • [image description: legs stretched out in a full bathtub with a beautiful goat mug for company.] • #ehlersdanlossyndrome  #ehlersdanlos  #chronicillness  #chronicpain  #dysautonomia  #raredisease  #mastcellactivationsyndrome  #mastcellactivationdisorder  #mastcell  #mcas  #mcad  #posturalorthostatictachycardiasyndrome  #pots  #potsie  #selfcare  #chronicbabe  #butyoudontlooksick 
Posted @withrepost • @cfcanada The holidays are an exciting time of year, but they are also a very busy time and for some people, it can even be quite stressful. The reality is that for everyone, the holidays shake up our routines; but for people with CF who have a complex and time-consuming treatment routine, the holidays can really impact your health. We asked our community members how they navigate the holidays. We will share their experiences throughout the month. Please share yours as well!⠀
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#cysticfibrosis #aworldwithoutCF #spoonie #chronicillness  #raredisease #holidays
Posted @withrepost • @cfcanada The holidays are an exciting time of year, but they are also a very busy time and for some people, it can even be quite stressful. The reality is that for everyone, the holidays shake up our routines; but for people with CF who have a complex and time-consuming treatment routine, the holidays can really impact your health. We asked our community members how they navigate the holidays. We will share their experiences throughout the month. Please share yours as well!⠀ ⠀ ⠀ ⠀ #cysticfibrosis  #aworldwithoutCF  #spoonie  #chronicillness  #raredisease  #holidays 
Join our mailing list to receive the latest news and updates from Zoe’s Story. 😊💜⠀
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Click the link in bio.⠀
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#InvisibleIllnessFighter #RareDisease #RareIllness #RareDiseases #InvisibleDisease #DisabilityRights #ChronicPain #ChronicallyIll #Spoonie #ChronicIllness #Spoonies #zoestory #Zoecrmo #chronicrecurrentmultifocalosteomyelitis #osteomyelitis #autoinflammatorydisease #raredisease #crmo #crmowarrior #zoecrmo #zoestory
Join our mailing list to receive the latest news and updates from Zoe’s Story. 😊💜⠀ ⠀ Click the link in bio.⠀ .⠀ .⠀ .⠀ .⠀ .⠀ #InvisibleIllnessFighter  #RareDisease  #RareIllness  #RareDiseases  #InvisibleDisease  #DisabilityRights  #ChronicPain  #ChronicallyIll  #Spoonie  #ChronicIllness  #Spoonies  #zoestory  #Zoecrmo  #chronicrecurrentmultifocalosteomyelitis  #osteomyelitis  #autoinflammatorydisease  #raredisease  #crmo  #crmowarrior  #zoecrmo  #zoestory 
Spinal Muscular Atrophy(SMA) is a rare neuromuscular disease characterized by loss of lower motor neurons and progressive muscle wasting, often leading to early death. The patients with SMA are difficult with fundamental activities such as walking, eating and breathing. In December 2017, the only treatment ‘Spinraza’ was approved by FDA in South Korea. But, it’s impossible to access this treatment for high price without coverage of insurance.
‘#SPINRAZA: Miracle 4 All’ is the campaign for insurance coverage(NHI: National Health Insurance) of Spinraza in South Korea. If you want give a miracle for someone with SMA, please share or regramm this or tag ‘dear my sma’ account(@dear_my_sma). :) #spinraza_miracle4all #spinalmuscularatophy #raredisease #spinraza #insurancecoverage
#healthinsurancereviewassessmentservice #nationalhealthinsuranceservice 
#ministryofhealthandwelfare #southkorea #giveamiracle 
#share #followme #regramm #campaign #humanrights
Spinal Muscular Atrophy(SMA) is a rare neuromuscular disease characterized by loss of lower motor neurons and progressive muscle wasting, often leading to early death. The patients with SMA are difficult with fundamental activities such as walking, eating and breathing. In December 2017, the only treatment ‘Spinraza’ was approved by FDA in South Korea. But, it’s impossible to access this treatment for high price without coverage of insurance. ‘#SPINRAZA : Miracle 4 All’ is the campaign for insurance coverage(NHI: National Health Insurance) of Spinraza in South Korea. If you want give a miracle for someone with SMA, please share or regramm this or tag ‘dear my sma’ account(@dear_my_sma). :) #spinraza_miracle4all  #spinalmuscularatophy  #raredisease  #spinraza  #insurancecoverage  #healthinsurancereviewassessmentservice  #nationalhealthinsuranceservice  #ministryofhealthandwelfare  #southkorea  #giveamiracle  #share  #followme  #regramm  #campaign  #humanrights 
Just a couple of months and this treatment has done wonders. If I really think about it, it probably has saved my life or at least a couple of emergency trips to the hospital. This is completely a lifesaver .
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#chronicillness #invisibledisability #disability #disabled #restlesslegsyndrome #awareness #raredisease #chronicfatigue #zebrastrong #chronicpain #disabilityawareness #mayoclinic #panicattacks #superventriculartachycardia #svt #Neurocardiogenicsyncope #ncs #narcolepsy #posturalorthostatictachycardiasyndrome #POTS #fybromyalgia #chronicillnesswarrior #spoonie #dysautonomia #servicedog #servicedoghandler #mastcellactivationsyndrome #mcas #patellafemoralsyndrome #rarediseases
Just a couple of months and this treatment has done wonders. If I really think about it, it probably has saved my life or at least a couple of emergency trips to the hospital. This is completely a lifesaver . . . . #chronicillness  #invisibledisability  #disability  #disabled  #restlesslegsyndrome  #awareness  #raredisease  #chronicfatigue  #zebrastrong  #chronicpain  #disabilityawareness  #mayoclinic  #panicattacks  #superventriculartachycardia  #svt  #Neurocardiogenicsyncope  #ncs  #narcolepsy  #posturalorthostatictachycardiasyndrome  #POTS  #fybromyalgia  #chronicillnesswarrior  #spoonie  #dysautonomia  #servicedog  #servicedoghandler  #mastcellactivationsyndrome  #mcas  #patellafemoralsyndrome  #rarediseases 
Good morning ☀️
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#aaronscoffeecorner #aaronsmugs #morningmotivation #giveback #raredisease #luriechildrens #luriechildrenshospital #picu #pedsicu #all4your1 #carusoway #keurig #coffee #coffeelover #chicago
The 14th annual Feingold Center Patient Holiday Party was a blast! Still grinning cheek to cheek 🤗Thank you @jordansfurn for partnering with us every year!
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#happyholidays #joy #family #friends #nonprofit #patientcare #geneticdisorders #raredisease #give
Visit our blog, where we explain everything about Niemann Pick we know
Hope you like it
#raredisease #niemannpick #niemanpick #blog #hardworking #niemann #pick #hopeyoulikeit #tarragona #project #amazing #investigation #investigating
Asking a Black Woman or a woman of color if the mental illness (*correction; #mooddisorder) she suffers from "is hereditary" is racist if you're unaware. Unfortunately, the mental health system is the current institution available to us due to cost efficiency, time and access especially in the United States of America. An institution that was created to predatorily and without justification prove African American inferiority and medical apartheid wreaking havoc on our communities. We still face the same threats by the same biases, prejudices and discrimination in the mental health system that we must bring forth attention and awareness to bring about change. Peace. @my_child_is_on_the_spectrum
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#specialneeds #specialneedskids #specialneedsmom #raredisease #Mitochondrialdiseases #epilepsy #epilepsyawareness #epilepsywarrior #raredisease #rarediseaseawareness #epilepsy #epilepsyawareness #epilepsywarrior #epilepsyawarenessday #autism #autismawareness #autismspeaks #autismmom #autismacceptance #autismlove #autismfamily #newyork #newjersey #autismparent #neurofibromatosis #cerebralpalsy #cerebralpalsyawareness
Asking a Black Woman or a woman of color if the mental illness (*correction; #mooddisorder ) she suffers from "is hereditary" is racist if you're unaware. Unfortunately, the mental health system is the current institution available to us due to cost efficiency, time and access especially in the United States of America. An institution that was created to predatorily and without justification prove African American inferiority and medical apartheid wreaking havoc on our communities. We still face the same threats by the same biases, prejudices and discrimination in the mental health system that we must bring forth attention and awareness to bring about change. Peace. @my_child_is_on_the_spectrum . . . . . . . . . . . . . . . . . . . . . #specialneeds  #specialneedskids  #specialneedsmom  #raredisease  #Mitochondrialdiseases  #epilepsy  #epilepsyawareness  #epilepsywarrior  #raredisease  #rarediseaseawareness  #epilepsy  #epilepsyawareness  #epilepsywarrior  #epilepsyawarenessday  #autism  #autismawareness  #autismspeaks  #autismmom  #autismacceptance  #autismlove  #autismfamily  #newyork  #newjersey  #autismparent  #neurofibromatosis  #cerebralpalsy  #cerebralpalsyawareness 
Spinal Muscular Atrophy(SMA) is a rare neuromuscular disease characterized by loss of lower motor neurons and progressive muscle wasting, often leading to early death. The patients with SMA are difficult with fundamental activities such as walking, eating and breathing. In December 2017, the only treatment ‘Spinraza’ was approved by FDA in South Korea. But, it’s impossible to access this treatment for high price without coverage of insurance.
‘#SPINRAZA: Miracle 4 All’ is the campaign for insurance coverage(NHI: National Health Insurance) of Spinraza in South Korea. If you want give a miracle for someone with SMA, please share or regramm this or tag ‘dear my sma’ account(@dear_my_sma). :) #spinraza_miracle4all #spinalmuscularatophy #raredisease #spinraza #insurancecoverage
#healthinsurancereviewassessmentservice #nationalhealthinsuranceservice 
#ministryofhealthandwelfare #southkorea #giveamiracle 
#share #followme #regramm #campaign #humanrights
Spinal Muscular Atrophy(SMA) is a rare neuromuscular disease characterized by loss of lower motor neurons and progressive muscle wasting, often leading to early death. The patients with SMA are difficult with fundamental activities such as walking, eating and breathing. In December 2017, the only treatment ‘Spinraza’ was approved by FDA in South Korea. But, it’s impossible to access this treatment for high price without coverage of insurance. ‘#SPINRAZA : Miracle 4 All’ is the campaign for insurance coverage(NHI: National Health Insurance) of Spinraza in South Korea. If you want give a miracle for someone with SMA, please share or regramm this or tag ‘dear my sma’ account(@dear_my_sma). :) #spinraza_miracle4all  #spinalmuscularatophy  #raredisease  #spinraza  #insurancecoverage  #healthinsurancereviewassessmentservice  #nationalhealthinsuranceservice  #ministryofhealthandwelfare  #southkorea  #giveamiracle  #share  #followme  #regramm  #campaign  #humanrights 
Spinal Muscular Atrophy(SMA) is a rare neuromuscular disease characterized by loss of lower motor neurons and progressive muscle wasting, often leading to early death. The patients with SMA are difficult with fundamental activities such as walking, eating and breathing. In December 2017, the only treatment ‘Spinraza’ was approved by FDA in South Korea. But, it’s impossible to access this treatment for high price without coverage of insurance.
‘#SPINRAZA: Miracle 4 All’ is the campaign for insurance coverage(NHI: National Health Insurance) of Spinraza in South Korea. If you want give a miracle for someone with SMA, please share or regramm this or tag ‘dear my sma’ account(@dear_my_sma). :) #spinraza_miracle4all #spinalmuscularatophy #raredisease #spinraza #insurancecoverage
#healthinsurancereviewassessmentservice #nationalhealthinsuranceservice 
#ministryofhealthandwelfare #southkorea #giveamiracle 
#share #followme #regramm #campaign #humanrights
Spinal Muscular Atrophy(SMA) is a rare neuromuscular disease characterized by loss of lower motor neurons and progressive muscle wasting, often leading to early death. The patients with SMA are difficult with fundamental activities such as walking, eating and breathing. In December 2017, the only treatment ‘Spinraza’ was approved by FDA in South Korea. But, it’s impossible to access this treatment for high price without coverage of insurance. ‘#SPINRAZA : Miracle 4 All’ is the campaign for insurance coverage(NHI: National Health Insurance) of Spinraza in South Korea. If you want give a miracle for someone with SMA, please share or regramm this or tag ‘dear my sma’ account(@dear_my_sma). :) #spinraza_miracle4all  #spinalmuscularatophy  #raredisease  #spinraza  #insurancecoverage  #healthinsurancereviewassessmentservice  #nationalhealthinsuranceservice  #ministryofhealthandwelfare  #southkorea  #giveamiracle  #share  #followme  #regramm  #campaign  #humanrights 
Spinal Muscular Atrophy(SMA) is a rare neuromuscular disease characterized by loss of lower motor neurons and progressive muscle wasting, often leading to early death. The patients with SMA are difficult with fundamental activities such as walking, eating and breathing. In December 2017, the only treatment ‘Spinraza’ was approved by FDA in South Korea. But, it’s impossible to access this treatment for high price without coverage of insurance.
‘#SPINRAZA: Miracle 4 All’ is the campaign for insurance coverage(NHI: National Health Insurance) of Spinraza in South Korea. If you want give a miracle for someone with SMA, please share or regramm this or tag ‘dear my sma’ account(@dear_my_sma). :) #spinraza_miracle4all #spinalmuscularatophy #raredisease #spinraza #insurancecoverage
#healthinsurancereviewassessmentservice #nationalhealthinsuranceservice 
#ministryofhealthandwelfare #southkorea #giveamiracle 
#share #followme #regramm #campaign #humanrights
Spinal Muscular Atrophy(SMA) is a rare neuromuscular disease characterized by loss of lower motor neurons and progressive muscle wasting, often leading to early death. The patients with SMA are difficult with fundamental activities such as walking, eating and breathing. In December 2017, the only treatment ‘Spinraza’ was approved by FDA in South Korea. But, it’s impossible to access this treatment for high price without coverage of insurance. ‘#SPINRAZA : Miracle 4 All’ is the campaign for insurance coverage(NHI: National Health Insurance) of Spinraza in South Korea. If you want give a miracle for someone with SMA, please share or regramm this or tag ‘dear my sma’ account(@dear_my_sma). :) #spinraza_miracle4all  #spinalmuscularatophy  #raredisease  #spinraza  #insurancecoverage  #healthinsurancereviewassessmentservice  #nationalhealthinsuranceservice  #ministryofhealthandwelfare  #southkorea  #giveamiracle  #share  #followme  #regramm  #campaign  #humanrights 
Beautiful 💕
Beautiful 💕
https://www.iheart.com/podcast/966-tsc-talks-29999221/

https://open.spotify.com/show/46XXV32uQNTjGFlUK6U4eD

Check out episodes 19 & 20 A broad look at TSC experience with #infantilespasms and #familyimpact 
Stay tuned for more! #tsctalks #autism #epilepsy #tuberoussclerosis #podcasting #podcast #raredisease #hope
Boyfriend @masterofserpents  brought me an extra spoon from Ketchikan, AK ⠀
#mcm #relationshipgoals #lovehim #extraspoon #spoonie #spoonielife #ureacycledisorder #raredisease #chronicillness #invisibleillness #genetics ⠀
#zebralife #butyoudontlooksick ⠀
#rarelife
I shared my holiday goals a few days ago. I also have some Christmas goals- that specifically relate to the day and the surrounding festivities. 
As a spoonie, this time of year requires a lot of navigation, but I still want to enjoy it and have a good time. So this is my ‘plan’. My handwriting is really 💩 at the moment as I’m having a huge flare. Pity. But oh well... #hellodecember #hellochristmas #hollyjolly #handletteringpractice #bulletjournal #bulletjournaldecember #bulletjournalcommunity #christmasbulletinboard #summerchristmas #plannergirl #planneraddict #bujo #bujoideas #bujolove #christmasillustration #festivefeels #bulletjournaldecember #bulletjournaldecoration #hellochristmas #holidaygoals #cvid #pi #pid #chronicillness #raredisease #mentalhealth #primaryimmunodeficiency #survivingtheholidays #christmasgoals
I shared my holiday goals a few days ago. I also have some Christmas goals- that specifically relate to the day and the surrounding festivities. As a spoonie, this time of year requires a lot of navigation, but I still want to enjoy it and have a good time. So this is my ‘plan’. My handwriting is really 💩 at the moment as I’m having a huge flare. Pity. But oh well... #hellodecember  #hellochristmas  #hollyjolly  #handletteringpractice  #bulletjournal  #bulletjournaldecember  #bulletjournalcommunity  #christmasbulletinboard  #summerchristmas  #plannergirl  #planneraddict  #bujo  #bujoideas  #bujolove  #christmasillustration  #festivefeels  #bulletjournaldecember  #bulletjournaldecoration  #hellochristmas  #holidaygoals  #cvid  #pi  #pid  #chronicillness  #raredisease  #mentalhealth  #primaryimmunodeficiency  #survivingtheholidays  #christmasgoals 
Hello guys. 
It’s only a few more days until I leave for my annual beach holiday! It’s been an incredibly tough year (one of my worst ever to be honest) and the holiday is desperately needed. ☀️ 🏖

I know that I will have to rest a lot over this time, but I also want to add some fun things in. Here’s the start of my holiday bucket list. 
Ps- can you see how I stuck a piece of paper over my mistake. 😆🤪🙀 oops. 
#hellodecember #hellochristmas #hollyjolly #handletteringpractice #bulletjournal #bulletjournaldecember #bulletjournalcommunity #christmasbulletinboard #summerchristmas #plannergirl #planneraddict #bujo #bujoideas #bujolove #christmasillustration #festivefeels #bulletjournaldecember #bulletjournaldecoration #hellochristmas #holidaygoals #cvid #pi #pid #chronicillness #raredisease #mentalhealth #primaryimmunodeficiency #survivingtheholidays #holidayswithchronicillness #holidaybucketlist
Hello guys. It’s only a few more days until I leave for my annual beach holiday! It’s been an incredibly tough year (one of my worst ever to be honest) and the holiday is desperately needed. ☀️ 🏖 I know that I will have to rest a lot over this time, but I also want to add some fun things in. Here’s the start of my holiday bucket list. Ps- can you see how I stuck a piece of paper over my mistake. 😆🤪🙀 oops. #hellodecember  #hellochristmas  #hollyjolly  #handletteringpractice  #bulletjournal  #bulletjournaldecember  #bulletjournalcommunity  #christmasbulletinboard  #summerchristmas  #plannergirl  #planneraddict  #bujo  #bujoideas  #bujolove  #christmasillustration  #festivefeels  #bulletjournaldecember  #bulletjournaldecoration  #hellochristmas  #holidaygoals  #cvid  #pi  #pid  #chronicillness  #raredisease  #mentalhealth  #primaryimmunodeficiency  #survivingtheholidays  #holidayswithchronicillness  #holidaybucketlist 
Spinal Muscular Atrophy(SMA) is a rare neuromuscular disease characterized by loss of lower motor neurons and progressive muscle wasting, often leading to early death. The patients with SMA are difficult with fundamental activities such as walking, eating and breathing. In December 2017, the only treatment ‘Spinraza’ was approved by FDA in South Korea. But, it’s impossible to access this treatment for high price without coverage of insurance.
‘#SPINRAZA: Miracle 4 All’ is the campaign for insurance coverage(NHI: National Health Insurance) of Spinraza in South Korea. If you want give a miracle for someone with SMA, please share or regramm this or tag ‘dear my sma’ account(@dear_my_sma). :) #spinraza_miracle4all #spinalmuscularatophy #raredisease #spinraza #insurancecoverage
#healthinsurancereviewassessmentservice #nationalhealthinsuranceservice 
#ministryofhealthandwelfare #southkorea #giveamiracle 
#share #followme #regramm #campaign #humanrights
Spinal Muscular Atrophy(SMA) is a rare neuromuscular disease characterized by loss of lower motor neurons and progressive muscle wasting, often leading to early death. The patients with SMA are difficult with fundamental activities such as walking, eating and breathing. In December 2017, the only treatment ‘Spinraza’ was approved by FDA in South Korea. But, it’s impossible to access this treatment for high price without coverage of insurance. ‘#SPINRAZA : Miracle 4 All’ is the campaign for insurance coverage(NHI: National Health Insurance) of Spinraza in South Korea. If you want give a miracle for someone with SMA, please share or regramm this or tag ‘dear my sma’ account(@dear_my_sma). :) #spinraza_miracle4all  #spinalmuscularatophy  #raredisease  #spinraza  #insurancecoverage  #healthinsurancereviewassessmentservice  #nationalhealthinsuranceservice  #ministryofhealthandwelfare  #southkorea  #giveamiracle  #share  #followme  #regramm  #campaign  #humanrights 
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#indonesiacareforrarediseases #infografik #raredisease #rarediseaseawareness #ic4rd #penyakitlangka #ayobelajar
#Woody016 ha llegado a Caldes de Montbui y nos manda esta foto 😍
#larutadewoody #MPS #mucopolisacaridosis #lisosomales #eerr #Mucopolysaccharide #Lysosomal #raredisease #Mucopolysaccharidosis @mps_lisosomales @MPSpapas
जो मरीज कई डॉक्टर को दिखा चुके हो या पुरानी बीमारी हो या पैसा बहुत लगता हो इलाज में या बहुत परेशान हो तो एक बार अवश्य मिले

डॉक्टर साहब के मिलते जुलते नामों से सावधान रहें, पता 
ढाका: ढाका कॉमप्लेस, टेम्पो स्टैंड (चाहत वस्त्रालय) निकट अप्सरा बैरगनिया रोड ढाका pin 845418 समय 9:00 बजे से 4:00 बजे 
सोरपनिया: pin 845427 
OPD:8 बजे सुबह से 8बजे शाम तक और 24 घंटे इमरजेंसी सेवा उपलब्ध, 
WhatsApp नंबर 9006784460
Facebook :https://www.facebook.com/Abdullah-Nursing-Home-1753169114977085/

Dhaka map :https://goo.gl/maps/g6SaAuzTEoR2
Sorpaniya map:https://goo.gl/maps/3kNuE9ifzyQ2
Home map:https://maps.google.com/?q=26.653273,85.221904&hl=en&gl=us
https://abdullahnursinghom.wixsite.com/website

बहुत जल्द बहुत सस्ता तमाम प्रकार के ऑपरेशन और डिलीवरी कराने की आधुनिक सेवा उपलब्ध होगी

#bihar #motihari #pixlr #picture #potrait #nursinghome #lifestyle #health #disease #acnetreatment #womenhealth #hairtreatment #kidneydisease #skintreatment #doctor #treatment #relive #rarediseaseday #diseases #heartdisease #diagnosis #raredisease #chronicdisease #india #hindi  #heartdisease #awsome #change #physician #pediatrics
जो मरीज कई डॉक्टर को दिखा चुके हो या पुरानी बीमारी हो या पैसा बहुत लगता हो इलाज में या बहुत परेशान हो तो एक बार अवश्य मिले डॉक्टर साहब के मिलते जुलते नामों से सावधान रहें, पता ढाका: ढाका कॉमप्लेस, टेम्पो स्टैंड (चाहत वस्त्रालय) निकट अप्सरा बैरगनिया रोड ढाका pin 845418 समय 9:00 बजे से 4:00 बजे सोरपनिया: pin 845427 OPD:8 बजे सुबह से 8बजे शाम तक और 24 घंटे इमरजेंसी सेवा उपलब्ध, WhatsApp नंबर 9006784460 Facebook :https://www.facebook.com/Abdullah-Nursing-Home-1753169114977085/ Dhaka map :https://goo.gl/maps/g6SaAuzTEoR2 Sorpaniya map:https://goo.gl/maps/3kNuE9ifzyQ2 Home map:https://maps.google.com/?q=26.653273,85.221904&hl=en&gl=us https://abdullahnursinghom.wixsite.com/website बहुत जल्द बहुत सस्ता तमाम प्रकार के ऑपरेशन और डिलीवरी कराने की आधुनिक सेवा उपलब्ध होगी #bihar  #motihari  #pixlr  #picture  #potrait  #nursinghome  #lifestyle  #health  #disease  #acnetreatment  #womenhealth  #hairtreatment  #kidneydisease  #skintreatment  #doctor  #treatment  #relive  #rarediseaseday  #diseases  #heartdisease  #diagnosis  #raredisease  #chronicdisease  #india  #hindi  #heartdisease  #awsome  #change  #physician  #pediatrics 
जो मरीज कई डॉक्टर को दिखा चुके हो या पुरानी बीमारी हो या पैसा बहुत लगता हो इलाज में या बहुत परेशान हो तो एक बार अवश्य मिले

डॉक्टर साहब के मिलते जुलते नामों से सावधान रहें, पता 
ढाका: ढाका कॉमप्लेस, टेम्पो स्टैंड (चाहत वस्त्रालय) निकट अप्सरा बैरगनिया रोड ढाका pin 845418 समय 9:00 बजे से 4:00 बजे 
सोरपनिया: pin 845427 
OPD:8 बजे सुबह से 8बजे शाम तक और 24 घंटे इमरजेंसी सेवा उपलब्ध, 
WhatsApp नंबर 9006784460
Facebook :https://www.facebook.com/Abdullah-Nursing-Home-1753169114977085/

Dhaka map :https://goo.gl/maps/g6SaAuzTEoR2
Sorpaniya map:https://goo.gl/maps/3kNuE9ifzyQ2
Home map:https://maps.google.com/?q=26.653273,85.221904&hl=en&gl=us
https://abdullahnursinghom.wixsite.com/website

बहुत जल्द बहुत सस्ता तमाम प्रकार के ऑपरेशन और डिलीवरी कराने की आधुनिक सेवा उपलब्ध होगी

#bihar #motihari #pixlr #picture #potrait #nursinghome #lifestyle #health #disease #acnetreatment #womenhealth #hairtreatment #kidneydisease #skintreatment #doctor #treatment #relive #rarediseaseday #diseases #heartdisease #diagnosis #raredisease #chronicdisease #india #hindi  #heartdisease #awsome #change #physician #pediatrics
जो मरीज कई डॉक्टर को दिखा चुके हो या पुरानी बीमारी हो या पैसा बहुत लगता हो इलाज में या बहुत परेशान हो तो एक बार अवश्य मिले डॉक्टर साहब के मिलते जुलते नामों से सावधान रहें, पता ढाका: ढाका कॉमप्लेस, टेम्पो स्टैंड (चाहत वस्त्रालय) निकट अप्सरा बैरगनिया रोड ढाका pin 845418 समय 9:00 बजे से 4:00 बजे सोरपनिया: pin 845427 OPD:8 बजे सुबह से 8बजे शाम तक और 24 घंटे इमरजेंसी सेवा उपलब्ध, WhatsApp नंबर 9006784460 Facebook :https://www.facebook.com/Abdullah-Nursing-Home-1753169114977085/ Dhaka map :https://goo.gl/maps/g6SaAuzTEoR2 Sorpaniya map:https://goo.gl/maps/3kNuE9ifzyQ2 Home map:https://maps.google.com/?q=26.653273,85.221904&hl=en&gl=us https://abdullahnursinghom.wixsite.com/website बहुत जल्द बहुत सस्ता तमाम प्रकार के ऑपरेशन और डिलीवरी कराने की आधुनिक सेवा उपलब्ध होगी #bihar  #motihari  #pixlr  #picture  #potrait  #nursinghome  #lifestyle  #health  #disease  #acnetreatment  #womenhealth  #hairtreatment  #kidneydisease  #skintreatment  #doctor  #treatment  #relive  #rarediseaseday  #diseases  #heartdisease  #diagnosis  #raredisease  #chronicdisease  #india  #hindi  #heartdisease  #awsome  #change  #physician  #pediatrics 
РОЛЬ МРТ МЫШЦ В ДИАГНОСТИКЕ НЕРВНО-МЫШЕЧНЫХ ЗАБОЛЕВАНИЙ⚠️
МРТ мышц* - это сложный, малоизученный и сложный метод диагностики миопатий (*именно в области мышц)! Делать его нужно в определенном режиме: режим STIR и Т1 режим, шаг срезов 1,5 см, только аксиальные срезы.
Но придя в кабинет МРТ и пожелав сделать МРТ мышц, есть большая доля вероятности быть не понятыми. В прочим и с чтением снимков МРТ могут возникнуть тупиковые трудности! 
Однако, хочу подчеркнуть, что на сегодняшний день, МРТ является стандартным методом, лишь ПОМОГАЮЩИМ поставить диагноз наследственной нервно-мышечной болезни, подтвердив тем самым, факт разрушения мышц. Он всего лишь ЧАСТЬ диагностической меры, прекрасно показывающий трофику мышц. 
Магнитно-резонансное исследование всего тела позволяет с высокой точностью определить паттерн вовлечения в патологический процесс тех или иных групп мышц, что значительно повышает диагностическую результативность. При этом обязательным условием является интерпретация данных МРТ с учетом клинической картины. Но об МРТ всего тела, вообще речь в нашей стране не идет (во-первых - это дорого, во-вторых интерпретация данных для наших врачей великая загадка). Рентгенологи, те, что делают МРТ, зачастую просто пишут - ОТЕК. 
В идеале, именно врач-невролог (например по результатам ЭНМГ или на основе своего осмотра и определения силы мышц "на глазок"), может определить степень вовлечения в процесс тех или иных групп мышц и назначить МРТ на наиболее (на его взгляд👀) пораженные мышцы. По снимкам МРТ, он определит, в каких мышцах есть замещение соединительной тканью. 
МРТ, так же рекомендовано делать перед процедурой биопсии мышц, чтобы выбрать для исследования УМЕРЕННО пораженную мышцу, а не "щипать" на слепую, по так называемым "стандартам" и получить опять таки, ложно-отрицательный результат. ☝️
P.S. МРТ мышц не такая уж дорогостоящая процедура💰, если делается именно в том, режиме, о котором я писала выше и на выбранные мышцы (например в Воронеже МРТ мышц бедер, ягодиц и нижней части спины, мне обошлрсь 2500рублей☝️). Как правило в прейскурантах мы можем видеть лишь "МРТ мягких тканей", увы, это не совсем то. Поэтому обязательно сохраните себе...прод-е в ком-ах👇
РОЛЬ МРТ МЫШЦ В ДИАГНОСТИКЕ НЕРВНО-МЫШЕЧНЫХ ЗАБОЛЕВАНИЙ⚠️ МРТ мышц* - это сложный, малоизученный и сложный метод диагностики миопатий (*именно в области мышц)! Делать его нужно в определенном режиме: режим STIR и Т1 режим, шаг срезов 1,5 см, только аксиальные срезы. Но придя в кабинет МРТ и пожелав сделать МРТ мышц, есть большая доля вероятности быть не понятыми. В прочим и с чтением снимков МРТ могут возникнуть тупиковые трудности! Однако, хочу подчеркнуть, что на сегодняшний день, МРТ является стандартным методом, лишь ПОМОГАЮЩИМ поставить диагноз наследственной нервно-мышечной болезни, подтвердив тем самым, факт разрушения мышц. Он всего лишь ЧАСТЬ диагностической меры, прекрасно показывающий трофику мышц. Магнитно-резонансное исследование всего тела позволяет с высокой точностью определить паттерн вовлечения в патологический процесс тех или иных групп мышц, что значительно повышает диагностическую результативность. При этом обязательным условием является интерпретация данных МРТ с учетом клинической картины. Но об МРТ всего тела, вообще речь в нашей стране не идет (во-первых - это дорого, во-вторых интерпретация данных для наших врачей великая загадка). Рентгенологи, те, что делают МРТ, зачастую просто пишут - ОТЕК. В идеале, именно врач-невролог (например по результатам ЭНМГ или на основе своего осмотра и определения силы мышц "на глазок"), может определить степень вовлечения в процесс тех или иных групп мышц и назначить МРТ на наиболее (на его взгляд👀) пораженные мышцы. По снимкам МРТ, он определит, в каких мышцах есть замещение соединительной тканью. МРТ, так же рекомендовано делать перед процедурой биопсии мышц, чтобы выбрать для исследования УМЕРЕННО пораженную мышцу, а не "щипать" на слепую, по так называемым "стандартам" и получить опять таки, ложно-отрицательный результат. ☝️ P.S. МРТ мышц не такая уж дорогостоящая процедура💰, если делается именно в том, режиме, о котором я писала выше и на выбранные мышцы (например в Воронеже МРТ мышц бедер, ягодиц и нижней части спины, мне обошлрсь 2500рублей☝️). Как правило в прейскурантах мы можем видеть лишь "МРТ мягких тканей", увы, это не совсем то. Поэтому обязательно сохраните себе...прод-е в ком-ах👇
Little Pud’s first trip the beach! 💛🏖 Safe to say start of spring isn’t the best time to test out the waters, might have to try again in Summer! Such a special moment though 💕 #raredisease #rarediseaseawareness #louisatticusjamesdann #heartfeltphotography
What are your daily self-care practices? One of mine is to meditate for 10 minutes which is such a grounding and calming practice! 🧘‍♀️ one thing I’ve learned is there is no wrong way to meditate. You can do this practice sitting, standing, laying down or even walking. I personally feel best meditating laying down with my full body supported 👌
What are your daily self-care practices? One of mine is to meditate for 10 minutes which is such a grounding and calming practice! 🧘‍♀️ one thing I’ve learned is there is no wrong way to meditate. You can do this practice sitting, standing, laying down or even walking. I personally feel best meditating laying down with my full body supported 👌
Our very own walking, talking advertisement! @fundraiserfunday 8th Dec 2018 #birmingham #Osteopetrosis #OPETS #raredisease
Spinal Muscular Atrophy(SMA) is a rare neuromuscular disease characterized by loss of lower motor neurons and progressive muscle wasting, often leading to early death. The patients with SMA are difficult with fundamental activities such as walking, eating and breathing. In December 2017, the only treatment ‘Spinraza’ was approved by FDA in South Korea. But, it’s impossible to access this treatment for high price without coverage of insurance.
‘#SPINRAZA: Miracle 4 All’ is the campaign for insurance coverage(NHI: National Health Insurance) of Spinraza in South Korea. If you want give a miracle for someone with SMA, please share or regramm this or tag ‘dear my sma’ account(@dear_my_sma). :) #spinraza_miracle4all #spinalmuscularatophy #raredisease #spinraza #insurancecoverage
#healthinsurancereviewassessmentservice #nationalhealthinsuranceservice 
#ministryofhealthandwelfare #southkorea #giveamiracle 
#share #followme #regramm #campaign #humanrights
Spinal Muscular Atrophy(SMA) is a rare neuromuscular disease characterized by loss of lower motor neurons and progressive muscle wasting, often leading to early death. The patients with SMA are difficult with fundamental activities such as walking, eating and breathing. In December 2017, the only treatment ‘Spinraza’ was approved by FDA in South Korea. But, it’s impossible to access this treatment for high price without coverage of insurance. ‘#SPINRAZA : Miracle 4 All’ is the campaign for insurance coverage(NHI: National Health Insurance) of Spinraza in South Korea. If you want give a miracle for someone with SMA, please share or regramm this or tag ‘dear my sma’ account(@dear_my_sma). :) #spinraza_miracle4all  #spinalmuscularatophy  #raredisease  #spinraza  #insurancecoverage  #healthinsurancereviewassessmentservice  #nationalhealthinsuranceservice  #ministryofhealthandwelfare  #southkorea  #giveamiracle  #share  #followme  #regramm  #campaign  #humanrights 
Spinal Muscular Atrophy(SMA) is a rare neuromuscular disease characterized by loss of lower motor neurons and progressive muscle wasting, often leading to early death. The patients with SMA are difficult with fundamental activities such as walking, eating and breathing. In December 2017, the only treatment ‘Spinraza’ was approved by FDA in South Korea. But, it’s impossible to access this treatment for high price without coverage of insurance.
‘#SPINRAZA: Miracle 4 All’ is the campaign for insurance coverage(NHI: National Health Insurance) of Spinraza in South Korea. If you want give a miracle for someone with SMA, please share or regramm this or tag ‘dear my sma’ account(@dear_my_sma). :) #spinraza_miracle4all #spinalmuscularatophy #raredisease #spinraza #insurancecoverage
#healthinsurancereviewassessmentservice #nationalhealthinsuranceservice 
#ministryofhealthandwelfare #southkorea #giveamiracle 
#share #followme #regramm #campaign #humanrights
Spinal Muscular Atrophy(SMA) is a rare neuromuscular disease characterized by loss of lower motor neurons and progressive muscle wasting, often leading to early death. The patients with SMA are difficult with fundamental activities such as walking, eating and breathing. In December 2017, the only treatment ‘Spinraza’ was approved by FDA in South Korea. But, it’s impossible to access this treatment for high price without coverage of insurance. ‘#SPINRAZA : Miracle 4 All’ is the campaign for insurance coverage(NHI: National Health Insurance) of Spinraza in South Korea. If you want give a miracle for someone with SMA, please share or regramm this or tag ‘dear my sma’ account(@dear_my_sma). :) #spinraza_miracle4all  #spinalmuscularatophy  #raredisease  #spinraza  #insurancecoverage  #healthinsurancereviewassessmentservice  #nationalhealthinsuranceservice  #ministryofhealthandwelfare  #southkorea  #giveamiracle  #share  #followme  #regramm  #campaign  #humanrights 
Spinal Muscular Atrophy(SMA) is a rare neuromuscular disease characterized by loss of lower motor neurons and progressive muscle wasting, often leading to early death. The patients with SMA are difficult with fundamental activities such as walking, eating and breathing. In December 2017, the only treatment ‘Spinraza’ was approved by FDA in South Korea. But, it’s impossible to access this treatment for high price without coverage of insurance.
‘#SPINRAZA: Miracle 4 All’ is the campaign for insurance coverage(NHI: National Health Insurance) of Spinraza in South Korea. If you want give a miracle for someone with SMA, please share or regramm this or tag ‘dear my sma’ account(@dear_my_sma). :) #spinraza_miracle4all #spinalmuscularatophy #raredisease #spinraza #insurancecoverage
#healthinsurancereviewassessmentservice #nationalhealthinsuranceservice 
#ministryofhealthandwelfare #southkorea #giveamiracle 
#share #followme #regramm #campaign #humanrights
Spinal Muscular Atrophy(SMA) is a rare neuromuscular disease characterized by loss of lower motor neurons and progressive muscle wasting, often leading to early death. The patients with SMA are difficult with fundamental activities such as walking, eating and breathing. In December 2017, the only treatment ‘Spinraza’ was approved by FDA in South Korea. But, it’s impossible to access this treatment for high price without coverage of insurance. ‘#SPINRAZA : Miracle 4 All’ is the campaign for insurance coverage(NHI: National Health Insurance) of Spinraza in South Korea. If you want give a miracle for someone with SMA, please share or regramm this or tag ‘dear my sma’ account(@dear_my_sma). :) #spinraza_miracle4all  #spinalmuscularatophy  #raredisease  #spinraza  #insurancecoverage  #healthinsurancereviewassessmentservice  #nationalhealthinsuranceservice  #ministryofhealthandwelfare  #southkorea  #giveamiracle  #share  #followme  #regramm  #campaign  #humanrights 
Gradient af. #palette #greyscale #girlsnotgrey #afi #manicpixiedreamgirl #pixiecut #shorthairlove #androgynousfashion #tomboyfemme #CIPO #IBD #AIP #dysautonomia #EDS #raredisease #fighton (New color by @patriciamichiko, Slytherin cut by @the_bohdizafa, portrait by @loveparisparker Carondelet)
Spinal Muscular Atrophy(SMA) is a rare neuromuscular disease characterized by loss of lower motor neurons and progressive muscle wasting, often leading to early death. The patients with SMA are difficult with fundamental activities such as walking, eating and breathing. In December 2017, the only treatment ‘Spinraza’ was approved by FDA in South Korea. But, it’s impossible to access this treatment for high price without coverage of insurance.
‘#SPINRAZA: Miracle 4 All’ is the campaign for insurance coverage(NHI: National Health Insurance) of Spinraza in South Korea. If you want give a miracle for someone with SMA, please share or regramm this or tag ‘dear my sma’ account(@dear_my_sma). :) #spinraza_miracle4all #spinalmuscularatophy #raredisease #spinraza #insurancecoverage
#healthinsurancereviewassessmentservice #nationalhealthinsuranceservice 
#ministryofhealthandwelfare #southkorea #giveamiracle 
#share #followme #regramm #campaign #humanrights
Spinal Muscular Atrophy(SMA) is a rare neuromuscular disease characterized by loss of lower motor neurons and progressive muscle wasting, often leading to early death. The patients with SMA are difficult with fundamental activities such as walking, eating and breathing. In December 2017, the only treatment ‘Spinraza’ was approved by FDA in South Korea. But, it’s impossible to access this treatment for high price without coverage of insurance. ‘#SPINRAZA : Miracle 4 All’ is the campaign for insurance coverage(NHI: National Health Insurance) of Spinraza in South Korea. If you want give a miracle for someone with SMA, please share or regramm this or tag ‘dear my sma’ account(@dear_my_sma). :) #spinraza_miracle4all  #spinalmuscularatophy  #raredisease  #spinraza  #insurancecoverage  #healthinsurancereviewassessmentservice  #nationalhealthinsuranceservice  #ministryofhealthandwelfare  #southkorea  #giveamiracle  #share  #followme  #regramm  #campaign  #humanrights 
A rare moment of solitude in the summer of 2016 in a space that is no longer called the NICU at children's hospital in Vancouver.  We spent almost 2 months in this spot holding our baby girl while her body grew strong enough to support itself, sometimes sitting in this chair for 5 hours at a time, true believers in skin to skin here... it may have become a little competition between my husband and I:)
Because of multiple MRSA outbreaks they stopped shifting the patient's into new rooms to stop the spread.  Ironically we were eventually the only ones left in this large room that usually held 12 babies as each one got sent home over time. It was a few days of privacy of sorts, less chaos I suppose.  When I look back on this image I think about all of the people that we met in this now empty space, our little temporary neighborhood. It's amazing how humans adapt to new a normal
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#preemie #vacterl #rarediseasefdn #raredisease #niculife #Vancouverfamilyphotographer
#yvrphotographer #documentyourdays #parenthood #newbornphotography
#documentaryphotography 
#childhoodunplugged #familyphotography
#Victoriaphotographer#shameoftheperfect #thedocumentaryapproach #dfpcommunity #Victoriafamilyphotographer #Vancouverislandphotographer #deeplyauthentic #thebeautifulreal #thenarrativesociety
A rare moment of solitude in the summer of 2016 in a space that is no longer called the NICU at children's hospital in Vancouver. We spent almost 2 months in this spot holding our baby girl while her body grew strong enough to support itself, sometimes sitting in this chair for 5 hours at a time, true believers in skin to skin here... it may have become a little competition between my husband and I:) Because of multiple MRSA outbreaks they stopped shifting the patient's into new rooms to stop the spread. Ironically we were eventually the only ones left in this large room that usually held 12 babies as each one got sent home over time. It was a few days of privacy of sorts, less chaos I suppose. When I look back on this image I think about all of the people that we met in this now empty space, our little temporary neighborhood. It's amazing how humans adapt to new a normal . . . . . . . . . . . #preemie  #vacterl  #rarediseasefdn  #raredisease  #niculife  #Vancouverfamilyphotographer  #yvrphotographer  #documentyourdays  #parenthood  #newbornphotography  #documentaryphotography  #childhoodunplugged  #familyphotography  #Victoriaphotographer #shameoftheperfect  #thedocumentaryapproach  #dfpcommunity  #Victoriafamilyphotographer  #Vancouverislandphotographer  #deeplyauthentic  #thebeautifulreal  #thenarrativesociety 
Another “Moo Moo” has arrived at our household. Teddy’s arms not growing bigger, but the pile of moo’s growing rapidly, him insisting that all must travel to each outpatient clinic and inpatient hospital admission. His first #moo, aka OG MOO, is now headless and despite a weekly thorough wash in the washer revolts every doctor due to how well #loved he appears. 
Anyway, meet, “Snowflake” Teddy’s newest “Moo Moo” from the North Pole (the company, @slumberkins who we are crazy about will tell you he’s an Alpaca But don’t tell Teddy that), who Santa sent him early to help him get through his first time at #stjudechildrensresearchhospital @stjude which he is a little nervous about. But snowflake says to Teddy: “I am #strong and #supported 
and I am never alone.
Climbing these mountains 
Will lead me home.” Pray for Teddy, the doctors, experts from around the world, scientists, and others, that they have news that is positive and gives us #hope for Teddy’s future. #careaboutrare #raredisease #rare @beyondthediagnosis #samd9l
Another “Moo Moo” has arrived at our household. Teddy’s arms not growing bigger, but the pile of moo’s growing rapidly, him insisting that all must travel to each outpatient clinic and inpatient hospital admission. His first #moo , aka OG MOO, is now headless and despite a weekly thorough wash in the washer revolts every doctor due to how well #loved  he appears. Anyway, meet, “Snowflake” Teddy’s newest “Moo Moo” from the North Pole (the company, @slumberkins who we are crazy about will tell you he’s an Alpaca But don’t tell Teddy that), who Santa sent him early to help him get through his first time at #stjudechildrensresearchhospital  @stjude which he is a little nervous about. But snowflake says to Teddy: “I am #strong  and #supported  and I am never alone. Climbing these mountains Will lead me home.” Pray for Teddy, the doctors, experts from around the world, scientists, and others, that they have news that is positive and gives us #hope  for Teddy’s future. #careaboutrare  #raredisease  #rare  @beyondthediagnosis #samd9l 
Spinal Muscular Atrophy(SMA) is a rare neuromuscular disease characterized by loss of lower motor neurons and progressive muscle wasting, often leading to early death. The patients with SMA are difficult with fundamental activities such as walking, eating and breathing. In December 2017, the only treatment ‘Spinraza’ was approved by FDA in South Korea. But, it’s impossible to access this treatment for high price without coverage of insurance.
‘#SPINRAZA: Miracle 4 All’ is the campaign for insurance coverage(NHI: National Health Insurance) of Spinraza in South Korea. If you want give a miracle for someone with SMA, please share or regramm this or tag ‘dear my sma’ account(@dear_my_sma). :) #spinraza_miracle4all #spinalmuscularatophy #raredisease #spinraza #insurancecoverage
#healthinsurancereviewassessmentservice #nationalhealthinsuranceservice 
#ministryofhealthandwelfare #southkorea #giveamiracle 
#share #followme #regramm #campaign #humanrights
Spinal Muscular Atrophy(SMA) is a rare neuromuscular disease characterized by loss of lower motor neurons and progressive muscle wasting, often leading to early death. The patients with SMA are difficult with fundamental activities such as walking, eating and breathing. In December 2017, the only treatment ‘Spinraza’ was approved by FDA in South Korea. But, it’s impossible to access this treatment for high price without coverage of insurance. ‘#SPINRAZA : Miracle 4 All’ is the campaign for insurance coverage(NHI: National Health Insurance) of Spinraza in South Korea. If you want give a miracle for someone with SMA, please share or regramm this or tag ‘dear my sma’ account(@dear_my_sma). :) #spinraza_miracle4all  #spinalmuscularatophy  #raredisease  #spinraza  #insurancecoverage  #healthinsurancereviewassessmentservice  #nationalhealthinsuranceservice  #ministryofhealthandwelfare  #southkorea  #giveamiracle  #share  #followme  #regramm  #campaign  #humanrights 
Spinal Muscular Atrophy(SMA) is a rare neuromuscular disease characterized by loss of lower motor neurons and progressive muscle wasting, often leading to early death. The patients with SMA are difficult with fundamental activities such as walking, eating and breathing. In December 2017, the only treatment ‘Spinraza’ was approved by FDA in South Korea. But, it’s impossible to access this treatment for high price without coverage of insurance.
‘#SPINRAZA: Miracle 4 All’ is the campaign for insurance coverage(NHI: National Health Insurance) of Spinraza in South Korea. If you want give a miracle for someone with SMA, please share or regramm this or tag ‘dear my sma’ account(@dear_my_sma). :) #spinraza_miracle4all #spinalmuscularatophy #raredisease #spinraza #insurancecoverage
#healthinsurancereviewassessmentservice #nationalhealthinsuranceservice 
#ministryofhealthandwelfare #southkorea #giveamiracle 
#share #followme #regramm #campaign #humanrights
Spinal Muscular Atrophy(SMA) is a rare neuromuscular disease characterized by loss of lower motor neurons and progressive muscle wasting, often leading to early death. The patients with SMA are difficult with fundamental activities such as walking, eating and breathing. In December 2017, the only treatment ‘Spinraza’ was approved by FDA in South Korea. But, it’s impossible to access this treatment for high price without coverage of insurance. ‘#SPINRAZA : Miracle 4 All’ is the campaign for insurance coverage(NHI: National Health Insurance) of Spinraza in South Korea. If you want give a miracle for someone with SMA, please share or regramm this or tag ‘dear my sma’ account(@dear_my_sma). :) #spinraza_miracle4all  #spinalmuscularatophy  #raredisease  #spinraza  #insurancecoverage  #healthinsurancereviewassessmentservice  #nationalhealthinsuranceservice  #ministryofhealthandwelfare  #southkorea  #giveamiracle  #share  #followme  #regramm  #campaign  #humanrights 
Spinal Muscular Atrophy(SMA) is a rare neuromuscular disease characterized by loss of lower motor neurons and progressive muscle wasting, often leading to early death. The patients with SMA are difficult with fundamental activities such as walking, eating and breathing. In December 2017, the only treatment ‘Spinraza’ was approved by FDA in South Korea. But, it’s impossible to access this treatment for high price without coverage of insurance.
‘#SPINRAZA: Miracle 4 All’ is the campaign for insurance coverage(NHI: National Health Insurance) of Spinraza in South Korea. If you want give a miracle for someone with SMA, please share or regramm this or tag ‘dear my sma’ account(@dear_my_sma). :) #spinraza_miracle4all #spinalmuscularatophy #raredisease #spinraza #insurancecoverage
#healthinsurancereviewassessmentservice #nationalhealthinsuranceservice 
#ministryofhealthandwelfare #southkorea #giveamiracle 
#share #followme #regramm #campaign #humanrights
Spinal Muscular Atrophy(SMA) is a rare neuromuscular disease characterized by loss of lower motor neurons and progressive muscle wasting, often leading to early death. The patients with SMA are difficult with fundamental activities such as walking, eating and breathing. In December 2017, the only treatment ‘Spinraza’ was approved by FDA in South Korea. But, it’s impossible to access this treatment for high price without coverage of insurance. ‘#SPINRAZA : Miracle 4 All’ is the campaign for insurance coverage(NHI: National Health Insurance) of Spinraza in South Korea. If you want give a miracle for someone with SMA, please share or regramm this or tag ‘dear my sma’ account(@dear_my_sma). :) #spinraza_miracle4all  #spinalmuscularatophy  #raredisease  #spinraza  #insurancecoverage  #healthinsurancereviewassessmentservice  #nationalhealthinsuranceservice  #ministryofhealthandwelfare  #southkorea  #giveamiracle  #share  #followme  #regramm  #campaign  #humanrights 
She loves ponies!
She loves ponies!
✨My sweet Lulu laying right where she belongs💘 She always either lays here or on my chest in the evening, but since I got my port💉 ...& since it’s external now, she can’t really lay on my chest without too much discomfort on my end😔 Anyways, I just love this little gopher monkey turkey butt of mine💕 She is always down for cuddles & I totally need them throughout the day.✨💛
@littleladylulu 💚
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#dogsofinstagram #buggsofinstagram #emotionalsupportanimal #doggo #supportdoggo #doggosofinstagram #chronicillness #chronicpain #raredisease #heds #eds #pots #mcad #ehlersdanlossyndrome #dysautonomia #mastcellactivationdisorder #spoonie #spooniedog #zebra #zebrastrong #zombiequeen #bendyaf #darkcomedy #cuddles #ilovemyfurbaby
✨My sweet Lulu laying right where she belongs💘 She always either lays here or on my chest in the evening, but since I got my port💉 ...& since it’s external now, she can’t really lay on my chest without too much discomfort on my end😔 Anyways, I just love this little gopher monkey turkey butt of mine💕 She is always down for cuddles & I totally need them throughout the day.✨💛 @littleladylulu 💚 . . . . . . . . . . . #dogsofinstagram  #buggsofinstagram  #emotionalsupportanimal  #doggo  #supportdoggo  #doggosofinstagram  #chronicillness  #chronicpain  #raredisease  #heds  #eds  #pots  #mcad  #ehlersdanlossyndrome  #dysautonomia  #mastcellactivationdisorder  #spoonie  #spooniedog  #zebra  #zebrastrong  #zombiequeen  #bendyaf  #darkcomedy  #cuddles  #ilovemyfurbaby 
Q: What motivated you to take part in this event? 
A: When I was asked to take part in this crazy idea to play tennis pretty much nonstop for 60 hours straight😱 what got me on board was an opportunity to make an impact on someone else’s life. I’m very compassionate, and get a lot of joy from making a contribution, so to be able to make this happen for Rare Voices Australia (RVA) was the biggest draw card. I’m also very competitive… so the idea of breaking a world record had a lot of pull power too. It was also the sheer size of the challenge – I like the idea of seeing how far I can push my body and mind, and see how long I can keep it positive and happy for😋
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Q: Why do you think the work of RVA is so important? 
A: Everyone deserves a go at life, and so many of us cruise through it. Why not help those who have come up against a hurdle and help them to not feel so alone in their fight with their rare disease👌
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Q: Have you played much tennis before? 
A: I grew up playing a lot of tennis, but I haven’t picked up a racquet much at all for the past 15 years. Hmm yeah that’s a lot of years between hits🤔
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Q: Tell us a Fun Fact about Katie
A: I grew up in Tassie on a farm, and when I was a little tacker, from age 3, I used to ‘show sheep’ for judging at the state and national level. I must have been pretty good at it as we won quite a few times!🥇Though thinking back on it, maybe it was actually because our family just had quality sheep😂 but I like to remember the story as it being about me being a champion ‘show-er’ (ahh Katie you’re still a champion in our books for joining our team for this epic challenge!🏆)
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You can support Katie - donation link in bio👉@rare_tennis_marathon .
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#guinnessworldrecord #womeninspiringwomen #womenfitness #helpus #daretoplayrare #raredisease #socialgood #charityevent #charitywork #makingithappen #makeithappen #inspirationdaily #inspirationoftheday #tennislife #tennislove #instatennis #tennisaustralia #endurance #endurancetraining #rarediseaseday
Q: What motivated you to take part in this event? A: When I was asked to take part in this crazy idea to play tennis pretty much nonstop for 60 hours straight😱 what got me on board was an opportunity to make an impact on someone else’s life. I’m very compassionate, and get a lot of joy from making a contribution, so to be able to make this happen for Rare Voices Australia (RVA) was the biggest draw card. I’m also very competitive… so the idea of breaking a world record had a lot of pull power too. It was also the sheer size of the challenge – I like the idea of seeing how far I can push my body and mind, and see how long I can keep it positive and happy for😋 . Q: Why do you think the work of RVA is so important? A: Everyone deserves a go at life, and so many of us cruise through it. Why not help those who have come up against a hurdle and help them to not feel so alone in their fight with their rare disease👌 . Q: Have you played much tennis before? A: I grew up playing a lot of tennis, but I haven’t picked up a racquet much at all for the past 15 years. Hmm yeah that’s a lot of years between hits🤔 . Q: Tell us a Fun Fact about Katie A: I grew up in Tassie on a farm, and when I was a little tacker, from age 3, I used to ‘show sheep’ for judging at the state and national level. I must have been pretty good at it as we won quite a few times!🥇Though thinking back on it, maybe it was actually because our family just had quality sheep😂 but I like to remember the story as it being about me being a champion ‘show-er’ (ahh Katie you’re still a champion in our books for joining our team for this epic challenge!🏆) . You can support Katie - donation link in bio👉@rare_tennis_marathon . . . . #guinnessworldrecord  #womeninspiringwomen  #womenfitness  #helpus  #daretoplayrare  #raredisease  #socialgood  #charityevent  #charitywork  #makingithappen  #makeithappen  #inspirationdaily  #inspirationoftheday  #tennislife  #tennislove  #instatennis  #tennisaustralia  #endurance  #endurancetraining  #rarediseaseday 
D2HGA is a very rare neuro-metabolic disorder in which cells produce a toxin that causes progressive damage to the cerebrum, the part of the brain that controls speech, memory, and movement. 
Discovered in 1980, there have since been approximately 150 individuals diagnosed worldwide. Currently there are 31 gene mutations that can cause D2HGA, and two cases with no gene mutation.

Symptoms include: Intellectual Disability, Muscular Hypotonia, Encephalitis, Seizures, Dysphasia and Death. Often there are no symptoms at all. 
Hudson has the development of a 4 month old. He can't walk or communicate.

#d2hga  #d2hgaawareness  #d2hydroxyglutaricaciduria #rarediseasesucks #bravekids 
#raredisease #rarediseases #rarediseaseawareness #wecareforrare #lcch #ladycilentochildrenshospital #queenslandchildrenshospital #womenandchildrenhospital #rarediseasekids #superkids
D2HGA is a very rare neuro-metabolic disorder in which cells produce a toxin that causes progressive damage to the cerebrum, the part of the brain that controls speech, memory, and movement. Discovered in 1980, there have since been approximately 150 individuals diagnosed worldwide. Currently there are 31 gene mutations that can cause D2HGA, and two cases with no gene mutation. Symptoms include: Intellectual Disability, Muscular Hypotonia, Encephalitis, Seizures, Dysphasia and Death. Often there are no symptoms at all. Hudson has the development of a 4 month old. He can't walk or communicate. #d2hga  #d2hgaawareness  #d2hydroxyglutaricaciduria  #rarediseasesucks  #bravekids  #raredisease  #rarediseases  #rarediseaseawareness  #wecareforrare  #lcch  #ladycilentochildrenshospital  #queenslandchildrenshospital  #womenandchildrenhospital  #rarediseasekids  #superkids 
Hudson’s diagnosis for D2HGA came when he was 12 weeks old.

Following five seizures on that day, blood tests were done which revealed that he had d2 Hydroxyglutaric Aciduria.

Prenatal diagnosis is also possible with the measurement of D-2 Hydroxyglutaric acid - which is present in the amniotic fluid of the fetus. This testing can be done after 16 weeks of pregnancy.

Diagnosis of D-2 HGA indicates the elevated level of D-2 hydroxyglutaric acid in the urine. This can be diagnosed by a urinary organic acid screening. 
Other diagnostic methods can include an MRI revealing delayed cerebral maturation and white-matter abnormalities in severe cases.

Genetic testing can also reveal the gene responsible for the cause of this condition.

#d2hga  #d2hgaawareness  #d2hydroxyglutaricaciduria #rarediseasesucks #bravekids 
#raredisease #rarediseases #rarediseaseawareness #wecareforrare #lcch #ladycilentochildrenshospital #queenslandchildrenshospital #womenandchildrenhospital #rarediseasekids #superkids
Hudson’s diagnosis for D2HGA came when he was 12 weeks old. Following five seizures on that day, blood tests were done which revealed that he had d2 Hydroxyglutaric Aciduria. Prenatal diagnosis is also possible with the measurement of D-2 Hydroxyglutaric acid - which is present in the amniotic fluid of the fetus. This testing can be done after 16 weeks of pregnancy. Diagnosis of D-2 HGA indicates the elevated level of D-2 hydroxyglutaric acid in the urine. This can be diagnosed by a urinary organic acid screening. Other diagnostic methods can include an MRI revealing delayed cerebral maturation and white-matter abnormalities in severe cases. Genetic testing can also reveal the gene responsible for the cause of this condition. #d2hga  #d2hgaawareness  #d2hydroxyglutaricaciduria  #rarediseasesucks  #bravekids  #raredisease  #rarediseases  #rarediseaseawareness  #wecareforrare  #lcch  #ladycilentochildrenshospital  #queenslandchildrenshospital  #womenandchildrenhospital  #rarediseasekids  #superkids 
“....Sadly, this is not the first time i have experienced this type of harassment and ignorance in the workplace. In fact, for the better part of last year I would have panic attacks if I had to request off for a medical appointment or call out due to a flare despite the plethora of sick hours and FMLA I had been approved for. I wish that this cruelty was limited to my place of employment but the truth is it happens every.single.day. These experiences are why RARE. Is so important, even with the federal law on your side you are not protected from those individuals who judge your condition based on their assessment of how sick you look or their interpretation of your diagnosis. I have so many dreams for RARE. Among those is smashing the stigma that sick has a certain look, set of characteristics or behaviors, not only for RARE. diseases but for all invisible illness, mental disorders and life challenges.....”
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To read this full entry head over to www.findyourrare.com and scribe to our newsletter👉🏻 a link will be emailed following your submission🖤✂️
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Already part of the movement? THANK YOU! You can read the full entry in this weeks newletter📧
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Brace yourselves.
RARE IS COMING.
🔜
#awarenessbrand #geneticdisorder #bekind #dontjudge #lovemore #nord #findyourRARE #raredisease #rarediseaseday #rarediseaseawareness #facesofRARE #thisisRARE #bebrave #brandswithmeaning #changestartshere #youareenough #youaregreaterthan #showyourrare #jointhemovement #whatdoessicklooklike #mentalhealth #choosekind  #medical #dontassume #sickness #health #whythismatters #harrassment #fmla #workplace
“....Sadly, this is not the first time i have experienced this type of harassment and ignorance in the workplace. In fact, for the better part of last year I would have panic attacks if I had to request off for a medical appointment or call out due to a flare despite the plethora of sick hours and FMLA I had been approved for. I wish that this cruelty was limited to my place of employment but the truth is it happens every.single.day. These experiences are why RARE. Is so important, even with the federal law on your side you are not protected from those individuals who judge your condition based on their assessment of how sick you look or their interpretation of your diagnosis. I have so many dreams for RARE. Among those is smashing the stigma that sick has a certain look, set of characteristics or behaviors, not only for RARE. diseases but for all invisible illness, mental disorders and life challenges.....” . . . To read this full entry head over to www.findyourrare.com and scribe to our newsletter👉🏻 a link will be emailed following your submission🖤✂️ . . . Already part of the movement? THANK YOU! You can read the full entry in this weeks newletter📧 . . . Brace yourselves. RARE IS COMING. 🔜 #awarenessbrand  #geneticdisorder  #bekind  #dontjudge  #lovemore  #nord  #findyourRARE  #raredisease  #rarediseaseday  #rarediseaseawareness  #facesofRARE  #thisisRARE  #bebrave  #brandswithmeaning  #changestartshere  #youareenough  #youaregreaterthan  #showyourrare  #jointhemovement  #whatdoessicklooklike  #mentalhealth  #choosekind  #medical  #dontassume  #sickness  #health  #whythismatters  #harrassment  #fmla  #workplace 
Alhamdulillah, dapat kiriman paket kasih sayang dari ibu Pipit ( Apotek Pelangi - Tangerang ), untuk anak-anak Pejuang Hati. Insya Allah akan disalurkan kepada yg membutuhkan melalui Rumah Singgah Pejuang Hati yg ada di Jakarta.

Terima Kasih bu Pipit, semoga berkah berlimpah untuk Ibu dan Keluarga.

Mari bergabung menjadi malaikat #PejuangHati bersama #nyfarafoundation .

Rek Donasi : 
706-740-3888
Bank Syariah Mandiri
a.n Yayasan Nyfara.

#AtresiaBilier #bayikuning #SusuPejuangHati #donasisusu #donasi #bantusesama #nutrisikhusus #giziburuk #sedekah #ayopeduli #anakindonesia #liverfailure #livertransplant #liverdisease #biliaryatresia #raredisease
Alhamdulillah, dapat kiriman paket kasih sayang dari ibu Pipit ( Apotek Pelangi - Tangerang ), untuk anak-anak Pejuang Hati. Insya Allah akan disalurkan kepada yg membutuhkan melalui Rumah Singgah Pejuang Hati yg ada di Jakarta. Terima Kasih bu Pipit, semoga berkah berlimpah untuk Ibu dan Keluarga. Mari bergabung menjadi malaikat #PejuangHati  bersama #nyfarafoundation  . Rek Donasi : 706-740-3888 Bank Syariah Mandiri a.n Yayasan Nyfara. #AtresiaBilier  #bayikuning  #SusuPejuangHati  #donasisusu  #donasi  #bantusesama  #nutrisikhusus  #giziburuk  #sedekah  #ayopeduli  #anakindonesia  #liverfailure  #livertransplant  #liverdisease  #biliaryatresia  #raredisease 
This is Liam after a seizure. He looks so peaceful, but it’s very hard on the poor kid. Unfortunately, Liam’s seizures have been more frequent lately, happening about twice a week. He’s now had 39 tonic/clonic seizures since I started counting in January. Each seizure lasts approximately 15 minutes at a time😔 #epilepsywarrior #raredisease #rhobtb2
This is Liam after a seizure. He looks so peaceful, but it’s very hard on the poor kid. Unfortunately, Liam’s seizures have been more frequent lately, happening about twice a week. He’s now had 39 tonic/clonic seizures since I started counting in January. Each seizure lasts approximately 15 minutes at a time😔 #epilepsywarrior  #raredisease  #rhobtb2 
Let me be real with ya... I have been busting out some work hours and did an 11 day stretch before I got a day off... I’m not complaining , this is just a season. I just want to let ya know that even though I haven’t been fully present on the socials doesn’t mean I’ve given up on my Health or Helping others with their health. 
I am still living that 80/20 rule in nutrition 🤙🏻 And I have started Fresh Today with workouts ⚡️ I put this phone on airplane ✈️ mode and killed my workout! 
I’m looking for 10  Busy people ready schedule in 20 ⚡️mins for Themselves , to have FUN 🎉with me in their Health Journey ... Commit Climb and Conquer with me !! ♥️🔥🦓
Drop 🦓 if you want to Commit Climb and Conquer with Me 😍
** warning explicit lyrics. I do not own rights to music**
Let me be real with ya... I have been busting out some work hours and did an 11 day stretch before I got a day off... I’m not complaining , this is just a season. I just want to let ya know that even though I haven’t been fully present on the socials doesn’t mean I’ve given up on my Health or Helping others with their health. I am still living that 80/20 rule in nutrition 🤙🏻 And I have started Fresh Today with workouts ⚡️ I put this phone on airplane ✈️ mode and killed my workout! I’m looking for 10 Busy people ready schedule in 20 ⚡️mins for Themselves , to have FUN 🎉with me in their Health Journey ... Commit Climb and Conquer with me !! ♥️🔥🦓 Drop 🦓 if you want to Commit Climb and Conquer with Me 😍 ** warning explicit lyrics. I do not own rights to music**
I took a pre-surgery plunge and chopped my hair into something that would better showcase these baller curls! @celiastylez is a goddess/magic worker and this cut was the pick-me-up I needed in a very stress-filled week ❤️ Countdown to brain surgery is ON - 4 more days 😬😬😬 #curlyhaircuts #curlyhair #curlyshorthair #yychair #yycchronicillness #yycraredisease #raredisease #trigeminalneuralgia #MVD #brainsurgery #glamwhilechronicallyill
I was reading my delightful #birthday gift, 📖 “Crafting with Feminist” 📖 from @shedandrea and came across this quote. 
It resonated with me today because it’s been a hard day, a hard week, a hard month, a hard year. I am afraid but right now I need to be brave and make hard decisions very soon.

I have to remember there’s a reason this happened to me. Who knows why I’ve been so brutal punished with this disease. But this is the hand I’m dealt...so that’s that. #cancer #gist #raredisease #sarcoma #sarcomaawareness #rarediseaseawareness #findacure #helpnikkibeatgist
I was reading my delightful #birthday  gift, 📖 “Crafting with Feminist” 📖 from @shedandrea and came across this quote. It resonated with me today because it’s been a hard day, a hard week, a hard month, a hard year. I am afraid but right now I need to be brave and make hard decisions very soon. I have to remember there’s a reason this happened to me. Who knows why I’ve been so brutal punished with this disease. But this is the hand I’m dealt...so that’s that. #cancer  #gist  #raredisease  #sarcoma  #sarcomaawareness  #rarediseaseawareness  #findacure  #helpnikkibeatgist 
Esta é uma verdade absoluta: 
Sorrir não mostra se uma pessoa é feliz ou não... Mas com certeza é um forte motivador de energia positiva. 
Sorrir pra nós mesmos.
Dar uma força para nossa mente com um afeto que vem de dentro. 
A gente precisa se amar sempre, e em primeiro lugar.
Desejo muitos sorrisos de amor próprio. ❤️
Via @queridolupus .
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#lupus #lupuswarrior #lupusfighter #mylifewithlupus #curainterior #reiki #vidaesaude #força #fé #strong #foco #vidacomsaude #les #fibromiálgicos #fibromyalgia #autoimune #reumatologia #dorcrônica #chronicpain #raredisease #sindromedesjogren #reumatologic #trombose #tvp #histoplasmose #cistitelupica #cistiteintersticial 🌻
Esta é uma verdade absoluta: Sorrir não mostra se uma pessoa é feliz ou não... Mas com certeza é um forte motivador de energia positiva. Sorrir pra nós mesmos. Dar uma força para nossa mente com um afeto que vem de dentro. A gente precisa se amar sempre, e em primeiro lugar. Desejo muitos sorrisos de amor próprio. ❤️ Via @queridolupus . . #lupus  #lupuswarrior  #lupusfighter  #mylifewithlupus  #curainterior  #reiki  #vidaesaude  #força  #fé  #strong  #foco  #vidacomsaude  #les  #fibromiálgicos  #fibromyalgia  #autoimune  #reumatologia  #dorcrônica  #chronicpain  #raredisease  #sindromedesjogren  #reumatologic  #trombose  #tvp  #histoplasmose  #cistitelupica  #cistiteintersticial  🌻
Special delivery of some new @steigensport socks from @sallybeggs9 arrived today! One pair of New Zealand themed and another country pair that is top secret for the moment. 🤐 Thanks Sally for all of your support in the fight against MLD! I am honored to have taken the Run Over MLD message of awareness around the world and will continue to help the fight against MLD until I cannot run anymore. Thank you to everyone for their well wishes and continued support! 
The Antarctic Ice Marathon was the SEVENTH marathon and SEVENTH continent for my Run Over MLD challenge to run 7 marathons on 7 continents over 2015/16/17 to raise awareness for the rare disease Metachromatic Leukodystrophy(MLD). Please continue to follow the journey and at www.runovermld.com 
#RunOverMLD #FMLD #mldawareness #mldfoundation #leukodystrophy #leukodystrophyawareness #careaboutrare #antarcticicemarathon #volcanomarathon #northpolemarathon #instarunners #queenstowninstarunners #runqueenstown #steigensocks #garmin #garminau #garminnz #beatyesterday #worldmarathonmajors #queenstownmarathon #queenstown #queenstowntrail #showyourrare #raredisease #tokyomarathon #wildthingsnz
Special delivery of some new @steigensport socks from @sallybeggs9 arrived today! One pair of New Zealand themed and another country pair that is top secret for the moment. 🤐 Thanks Sally for all of your support in the fight against MLD! I am honored to have taken the Run Over MLD message of awareness around the world and will continue to help the fight against MLD until I cannot run anymore. Thank you to everyone for their well wishes and continued support! The Antarctic Ice Marathon was the SEVENTH marathon and SEVENTH continent for my Run Over MLD challenge to run 7 marathons on 7 continents over 2015/16/17 to raise awareness for the rare disease Metachromatic Leukodystrophy(MLD). Please continue to follow the journey and at www.runovermld.com #RunOverMLD  #FMLD  #mldawareness  #mldfoundation  #leukodystrophy  #leukodystrophyawareness  #careaboutrare  #antarcticicemarathon  #volcanomarathon  #northpolemarathon  #instarunners  #queenstowninstarunners  #runqueenstown  #steigensocks  #garmin  #garminau  #garminnz  #beatyesterday  #worldmarathonmajors  #queenstownmarathon  #queenstown  #queenstowntrail  #showyourrare  #raredisease  #tokyomarathon  #wildthingsnz 
Live your adventure. Never let anything or anyone hold you back. Everything is achievable!!
Live your adventure. Never let anything or anyone hold you back. Everything is achievable!!
💜💜 A quick yummy nutritious dinner on a crazy running-around Monday evening after singing lessons for #specialneedssibling and special Olympic rhythmic gymnastics for #tubiegirl 
Shrimp curry with zucchini noodles and kale 🥬 🍤 🍛 💪💜💜
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#tubie #22q11 
#22q ##22qtie #blenderizeddiet #feedingtube #gtube #ftt #autism #digeorgesyndrome #specialneedsmom #cyclicvomitingsyndrome #specialneeds #specialneedsnutrition #nourishtoflourish #disability #geneticdisorder #gerd #raredisease #guthealth #medicallyfragile  #momtribe #medicalmom #motilitydisorder #eoe #cp #vocalcordparalysis #guthealth
💜💜 A quick yummy nutritious dinner on a crazy running-around Monday evening after singing lessons for #specialneedssibling  and special Olympic rhythmic gymnastics for #tubiegirl  Shrimp curry with zucchini noodles and kale 🥬 🍤 🍛 💪💜💜 . . . . #tubie  #22q11  #22q  ##22qtie  #blenderizeddiet  #feedingtube  #gtube  #ftt  #autism  #digeorgesyndrome  #specialneedsmom  #cyclicvomitingsyndrome  #specialneeds  #specialneedsnutrition  #nourishtoflourish  #disability  #geneticdisorder  #gerd  #raredisease  #guthealth  #medicallyfragile  #momtribe  #medicalmom  #motilitydisorder  #eoe  #cp  #vocalcordparalysis  #guthealth 
When dreams come true ! Forever greatful to coach @bradstevensofficial and @theceltics for making this happen ❤️ duke trashed but celtics lover !!!! For tonight #raredisease 0-Yash 1
#mywinner 
#diaryofmy10yo #spiritshines .
@kyrieirving we look forward to coming back and watching you play !
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#beantown 
#boston 
#celtics 
#tdgarden 
#medicalmomma 
#medicaldad 
#goceltics 
#basketball 
#sport
Day 344: 10/12/18 #photoaday •
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No uni today, but I was still up early as I have so much to get done at the moment. But it paid off as I finally got this massive assignment finished for my presentation and oral exam tomorrow 👍🏻 Also had some Brownie admin that I got sorted too, and wrote my Christmas cards and wrapped some presents. My pain levels have been really high today, everything seems to be spasming at once 😭 This evening I rode Cricket, and we did some Christmas gymkhana games, hence my fabulous costume 😂💁🏻‍♀️ Cricket wasn’t phased in the slightest by his mad christmas elf jockey, he puts up with my craziness so well bless him. Then after our lesson we all went out for a group Christmas meal at Cosmo, which was so much fun, had the best time 😁 @stellaj94 and @millis_molly_mandy got me the most perfect presents for Christmas, I might post them tomorrow if I remember, they are so perfect for me and I adore them ❤️❤️ #equestrian #equestrianlife #horsesofinstagram #horseriding #gymkhana #christmas #themostwonderfultimeoftheyear #paraequestrian #paradressage #RDA #ridingforthedisabled #ridingforthedisabledassociation #ehlersdanlossyndrome #EDS #hEDS #connectivetissuedisorder #raredisease #geneticdisorder #posturalorthostatictachycardiasyndrome #POTS #dysautonomia #hypotonia #chronicpain #chronicfatigue #chronicillness #chronicillnessblogger #disabilityblogger #lifestyleblogger
Day 344: 10/12/18 #photoaday  • • No uni today, but I was still up early as I have so much to get done at the moment. But it paid off as I finally got this massive assignment finished for my presentation and oral exam tomorrow 👍🏻 Also had some Brownie admin that I got sorted too, and wrote my Christmas cards and wrapped some presents. My pain levels have been really high today, everything seems to be spasming at once 😭 This evening I rode Cricket, and we did some Christmas gymkhana games, hence my fabulous costume 😂💁🏻‍♀️ Cricket wasn’t phased in the slightest by his mad christmas elf jockey, he puts up with my craziness so well bless him. Then after our lesson we all went out for a group Christmas meal at Cosmo, which was so much fun, had the best time 😁 @stellaj94 and @millis_molly_mandy got me the most perfect presents for Christmas, I might post them tomorrow if I remember, they are so perfect for me and I adore them ❤️❤️ #equestrian  #equestrianlife  #horsesofinstagram  #horseriding  #gymkhana  #christmas  #themostwonderfultimeoftheyear  #paraequestrian  #paradressage  #RDA  #ridingforthedisabled  #ridingforthedisabledassociation  #ehlersdanlossyndrome  #EDS  #hEDS  #connectivetissuedisorder  #raredisease  #geneticdisorder  #posturalorthostatictachycardiasyndrome  #POTS  #dysautonomia  #hypotonia  #chronicpain  #chronicfatigue  #chronicillness  #chronicillnessblogger  #disabilityblogger  #lifestyleblogger 
Platelets at 16,000. (normal 150,000-350,000)
Red blood cell are high.
White blood cells are also high.
Nplate is messing with my bone marrow but this my life...with Immune Thrombocytopenia Purpura(ITP) tough to  pronounce but more challenging to live with.
#Blessed #Purple4Platelets #ITPwarrior #RareDisease #BleedingDisorder #ChronicDisorder #Pain  #ChronicITP #Chronicillness #ITPstrong #ITP #LowPlatelets #Platelets  #StayStrong #StayPositive #Strong #Faith #Hope #FindaCure #Autoimmune #InvisibleIllness #AutoImmuneDisease #AutoImmuneDisorder #ITPaware #ITPawareness #Spoonie
Platelets at 16,000. (normal 150,000-350,000) Red blood cell are high. White blood cells are also high. Nplate is messing with my bone marrow but this my life...with Immune Thrombocytopenia Purpura(ITP) tough to pronounce but more challenging to live with. #Blessed  #Purple4Platelets  #ITPwarrior  #RareDisease  #BleedingDisorder  #ChronicDisorder  #Pain  #ChronicITP  #Chronicillness  #ITPstrong  #ITP  #LowPlatelets  #Platelets  #StayStrong  #StayPositive  #Strong  #Faith  #Hope  #FindaCure  #Autoimmune  #InvisibleIllness  #AutoImmuneDisease  #AutoImmuneDisorder  #ITPaware  #ITPawareness  #Spoonie 
Click on the link to sign up! https://rarepatientvoice.com/for-patients/sign-up/#Prurigonodularis  #rarepatientvoice #raredisease #