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Since I'm not really into Christmas celebration. (I'm mainly just happy to have two weeks vacation) 🎉 I'll probably forget to wish everyone a #merrychristmas.
So therefor #merryxmas, #happybirthday to everybody who will celebrate a birthday within the next 365 days, #happynewyear, #happyeaster🐰 and whatever...
😅
#Soliris is showing some really positive effects so let's see how it continues.
#raredisease #ihaveheardofmg #seemenotmg #adevilwithsnowflakes #myastheniagravis #wheelchairlife
Since I'm not really into Christmas celebration. (I'm mainly just happy to have two weeks vacation) 🎉 I'll probably forget to wish everyone a #merrychristmas . So therefor #merryxmas , #happybirthday  to everybody who will celebrate a birthday within the next 365 days, #happynewyear , #happyeaster 🐰 and whatever... 😅 #Soliris  is showing some really positive effects so let's see how it continues. #raredisease  #ihaveheardofmg  #seemenotmg  #adevilwithsnowflakes  #myastheniagravis  #wheelchairlife 
Thankful to get another infusion. #soliris #kidneytransplantrecipient #friday
Why and when do I use Soliris (Eculizumab). Great question! Happy holidays to the whole #myastheniagravis community. I’ll be fighting for you non-stop regardless of the time of year. I’m proud of each and every one of you! I’m still working on answering all of@your questions. At this point they are coming in much faster then I can answer them which I appreciate but please bear with me as I give each one the attention it deserves. Thank you all!! #myasthenia #medicine #neurology #autoimmunedisease #raredisease #soliris #nyc #ny #Timessquare #newyork #newyorkcity #service @myastheniaorg @mdaorg
Why and when do I use Soliris (Eculizumab). Great question! Happy holidays to the whole #myastheniagravis  community. I’ll be fighting for you non-stop regardless of the time of year. I’m proud of each and every one of you! I’m still working on answering all of@your questions. At this point they are coming in much faster then I can answer them which I appreciate but please bear with me as I give each one the attention it deserves. Thank you all!! #myasthenia  #medicine  #neurology  #autoimmunedisease  #raredisease  #soliris  #nyc  #ny  #Timessquare  #newyork  #newyorkcity  #service  @myastheniaorg @mdaorg
Nuova installazione di una pergola Med Jeans appena terminata.! Con illuminazione Led integrata per valorizzare il giardino dei nostri clienti..! #gibus #sassari #sardinia #design #solocosebelle #soliris #atelier
Being a nerd at the gym Pokémon attire haha Core workout today ever since my new treatment been hitting the gym daily.

Plank 4 sets tried to go for 30 sec each
Dragon flags 4 sets of 12 reps
Crunches 5 sets of 12 crunches 
Cable body twist 6 sets of 10 reps 
Side twist 6 sets of  10 reps
Kneeling cable crunch 5 sets of 12 reps
Russian swing 4 sets of 10 reps 
#fitness #workout #gym #24hourfitness #legday #coreworkout #exercise #weightlossjourney #myastheniagravis #soliris #infusion #health #healthylifestyle #pokemon #anime #swordartonline
Being a nerd at the gym Pokémon attire haha Core workout today ever since my new treatment been hitting the gym daily. Plank 4 sets tried to go for 30 sec each Dragon flags 4 sets of 12 reps Crunches 5 sets of 12 crunches Cable body twist 6 sets of 10 reps Side twist 6 sets of 10 reps Kneeling cable crunch 5 sets of 12 reps Russian swing 4 sets of 10 reps #fitness  #workout  #gym  #24hourfitness  #legday  #coreworkout  #exercise  #weightlossjourney  #myastheniagravis  #soliris  #infusion  #health  #healthylifestyle  #pokemon  #anime  #swordartonline 
Qualità nella semplicità..! Il risultato della nostra ultima installazione a Sassari in via Garavetti. #gibus #soliris #sardinia #solocosebelle #sassari #design #architecture
I would like to draw attention to this family’s struggle who are needing some help.  @mina.mjz in Iran has a desperate request to help with funds to buy his wife the medication she needs to survive. They have sold their home and are still struggling. If you are in a position to help them- please contact him.  It’s a life saving effort for this medication.  I have also sent a Direct message to @alexionpharmaceuticals the manufacturer of this drug who says they also help people with rare conditions.  If you are able- please Repost and share and DM @alexionpharmaceuticals  The fact that these drugs are not affordable is unconscionable #soliris #iran
I would like to draw attention to this family’s struggle who are needing some help. @mina.mjz in Iran has a desperate request to help with funds to buy his wife the medication she needs to survive. They have sold their home and are still struggling. If you are in a position to help them- please contact him. It’s a life saving effort for this medication. I have also sent a Direct message to @alexionpharmaceuticals the manufacturer of this drug who says they also help people with rare conditions. If you are able- please Repost and share and DM @alexionpharmaceuticals The fact that these drugs are not affordable is unconscionable #soliris  #iran 
I do not know what you wish now, but I wish you never have any wish like my wish.

My only wish is to have some of these ampoules to return my health to my wife.

please anyone help we and save my wife's life🙏🙏🙏 #soliris #help #charity #lcfc #liverpoolfc #liverpool #health #hopeforhealth #wish #treatment #philanthropist #theroyalfamily #helpme #savelife
Started with #Soliris last Wednesday. Today is #2 and I'd say that I'm seeing improvement. Let's see how it continues. 💪👌
#raredisease #ihaveheardofmg #seemenotmg #adevilwithsnowflakes #myastheniagravis
Sexta feira foi dia de mais uma dose das gotinhas de vida da Iane! 😍❤🙌🏻
Infelizmente o caso da Iane está ainda mais grave, com isso, ela fará exames duas vezes na semana; vamos continuar orando e mandando muitas energias positivas para ela ❤🙌🏻🙏🏻
#todospelavitoriadeianecontraohpn
#todoscontraohpn 
#alutadeianecontraohpn
#doação
#ajudecomamor
#ajudeiane 
#façaobem
#soliris
#eculizumab 
#minhavidanaotempreco
———————————————
CAIXA
Agência.: 4166 | Conta.: 000222069 | Op.: 013
CPF: 002.808.031-92
Favorecido: Iane Pereira Lacerda

Aplicativo Joyz: alutadeianecontraohpn 
Vakinha online: A luta contra o HPN
Sexta feira foi dia de mais uma dose das gotinhas de vida da Iane! 😍❤🙌🏻 Infelizmente o caso da Iane está ainda mais grave, com isso, ela fará exames duas vezes na semana; vamos continuar orando e mandando muitas energias positivas para ela ❤🙌🏻🙏🏻 #todospelavitoriadeianecontraohpn  #todoscontraohpn  #alutadeianecontraohpn  #doação  #ajudecomamor  #ajudeiane  #façaobem  #soliris  #eculizumab  #minhavidanaotempreco  ——————————————— CAIXA Agência.: 4166 | Conta.: 000222069 | Op.: 013 CPF: 002.808.031-92 Favorecido: Iane Pereira Lacerda Aplicativo Joyz: alutadeianecontraohpn Vakinha online: A luta contra o HPN
#Repost @solirismusic
・・・
#newmusic link in bio
#freestyle #soliris #unsignedartist #moneybop @6ix9ine #freeyou #queen of #nyc #bronx #springfield #fire #lyricist #hot97 #power105 #hot97whosnext #solirismusic #womanzworldmusic #dontsleep #RECKRUMSTUDIO @therealkp3__ @fritzdacat57 @duane112 @369inc @magmms100 @papoigotchu @queens_shadow @rtg_therealmidnightblu @therealemula_57
#newmusic link in bio💥
Original beat by @therealkp3__ 🔥🔥🔥
#freestyle #soliris #unsignedartist #moneybop @6ix9ine #freeyou #queen of #nyc #bronx #springfield #fire #lyricist #hot97 #power105 #hot97whosnext #solirismusic #womanzworldmusic #dontsleep #video #free6ix9ine
I do not know what you wish now, but I wish you never have any wish like my wish.

My only wish is to have some of these ampoules to return my health to my wife.

please anyone help we and save my wife's life🙏🙏🙏 #soliris #help #charity #lcfc #liverpoolfc #liverpool #health #hopeforhealth #wish #treatment #philanthropist #theroyalfamily #helpme #savelife
Hoje a Iane realizou uma cirurgia por conta das varizes pélvicas que causavam muitas dores, a cirurgia ocorreu tranquilamente e vamos continuar rezando para que o pós-cirurgia seja tão bom quanto!
Desde já, agradeço a todos pelas orações e energia positiva!!!
#todospelavitoriadeianecontraohpn
#todoscontraohpn 
#alutadeianecontraohpn
#doação
#ajudecomamor
#ajudeiane 
#façaobem
#soliris
#eculizumab 
#minhavidanaotempreco
#TODOSpelosRAROS
#TODOSpelaVIDA
———————————————
CAIXA
Agência.: 4166 | Conta.: 000222069 | Op.: 013
CPF: 002.808.031-92
Favorecido: Iane Pereira Lacerda

Aplicativo Joyz: alutadeianecontraohpn 
Vakinha online: A luta contra o HPN
Hoje a Iane realizou uma cirurgia por conta das varizes pélvicas que causavam muitas dores, a cirurgia ocorreu tranquilamente e vamos continuar rezando para que o pós-cirurgia seja tão bom quanto! Desde já, agradeço a todos pelas orações e energia positiva!!! #todospelavitoriadeianecontraohpn  #todoscontraohpn  #alutadeianecontraohpn  #doação  #ajudecomamor  #ajudeiane  #façaobem  #soliris  #eculizumab  #minhavidanaotempreco  #TODOSpelosRAROS  #TODOSpelaVIDA  ——————————————— CAIXA Agência.: 4166 | Conta.: 000222069 | Op.: 013 CPF: 002.808.031-92 Favorecido: Iane Pereira Lacerda Aplicativo Joyz: alutadeianecontraohpn Vakinha online: A luta contra o HPN
I'm finally approved to try this for #myastheniagravis ! Waiting for start date.  I've been stockpiling on top of my stockpile of ginger products (non-alcoholic ginger beer, ginger tea, ginger candy,  ginger chewing gum, ...). Here's to it all working and helping me out.

#soliris #approved #mgawareness #mgstrong #thestruggleisreal
Miss Zoey kept me company during my infusion this morning. #soliris #thankful🙏 #celebratelife
Once a month, my pharmacy ships me an order of  #Soliris for my #MyastheniaGravis . I get enough for two in home infusions. Four bottles per infusion, one infusion every 14 days. @alexionpharmaceuticals is the manufacturer of this medication.  It has made such an impact on my #MG. I am willing to wait from sunrise until sunset to sign for this package if necessary. Thank you, Alexion #MGStars #MakinGConnections #IHaveHeardOfMG #MGWarrior #Fighter @myastheniaorg
Once a month, my pharmacy ships me an order of #Soliris  for my #MyastheniaGravis  . I get enough for two in home infusions. Four bottles per infusion, one infusion every 14 days. @alexionpharmaceuticals is the manufacturer of this medication. It has made such an impact on my #MG . I am willing to wait from sunrise until sunset to sign for this package if necessary. Thank you, Alexion #MGStars  #MakinGConnections  #IHaveHeardOfMG  #MGWarrior  #Fighter  @myastheniaorg
هل هناك أي شخص هناك حياة الإنسان يستحق أكثر من المال.  زوجتي لديها مرض دموي ولا تزال غير المعالجة بسبب ارتفاع التكلفة. هي بحاجة إلى دواء سوليريس.
الرجاء المساعدة و ننقذ حياتها بسبب الله و الإنسانية 🙏💉. نحن بحاجة لشراء الدواء سوليريس. ساعدنا مع حساب الله والنبي (صلى الله عليه وسلم). إذا لم يكن بإمكاني شراء هذا الدواء والتوقف عن العلاج ، فهو خطير أيضًا ، وسيتم التخلص من علاجاتنا السابقة. أتوسل إليك 🙏🙏🙏. I need help to buy #Soliris medicine for my wife. please help we & giving again life to her🙏  i cant buy ampoule for this week of treatment. please help we for 1 - 2 ampoule 💉

#help #health #helpforhealth #charity #مساعدة_انسانية #مساعدة_الاخرين #كويت #بحرين #بحرينية #قطر #امير_كويت #اميرالانسانيه #اماراتية #خيرية #علاج_السرطان #الله #سعودية #مساعدة_مالية #مساعدة_الآخرين #مساعدة #مساعدة_المحتاجين #يشفي 
@mishalalarouj @ahmad_alnufais @fahdalkandri @faisalalqasimi @mohamedbinkhalifa @khk @drtalsabah @aalozairi
هل هناك أي شخص هناك حياة الإنسان يستحق أكثر من المال. زوجتي لديها مرض دموي ولا تزال غير المعالجة بسبب ارتفاع التكلفة. هي بحاجة إلى دواء سوليريس. الرجاء المساعدة و ننقذ حياتها بسبب الله و الإنسانية 🙏💉. نحن بحاجة لشراء الدواء سوليريس. ساعدنا مع حساب الله والنبي (صلى الله عليه وسلم). إذا لم يكن بإمكاني شراء هذا الدواء والتوقف عن العلاج ، فهو خطير أيضًا ، وسيتم التخلص من علاجاتنا السابقة. أتوسل إليك 🙏🙏🙏. I need help to buy #Soliris  medicine for my wife. please help we & giving again life to her🙏 i cant buy ampoule for this week of treatment. please help we for 1 - 2 ampoule 💉 #help  #health  #helpforhealth  #charity  #مساعدة_انسانية  #مساعدة_الاخرين  #كويت  #بحرين  #بحرينية  #قطر  #امير_كويت  #اميرالانسانيه  #اماراتية  #خيرية  #علاج_السرطان  #الله  #سعودية  #مساعدة_مالية  #مساعدة_الآخرين  #مساعدة  #مساعدة_المحتاجين  #يشفي  @mishalalarouj @ahmad_alnufais @fahdalkandri @faisalalqasimi @mohamedbinkhalifa @khk @drtalsabah @aalozairi
hi. i need help to buy #Soliris medicine for my wife. please anyone help we & giving again life to her🙏 i cant buy ampoule for this week of treatment. please anyone help we for 1 -2  ampoule 💉
hi. i need help to buy #Soliris  medicine for my wife. please anyone help we & giving again life to her🙏 i cant buy ampoule for this week of treatment. please anyone help we for 1 -2 ampoule 💉
Vorgespräch für das neue Medikament #Soliris.
Bin gespannt, vorallem wann es los geht.
Vorgespräch für das neue Medikament #Soliris . Bin gespannt, vorallem wann es los geht.
Hi. I need help to buy #Soliris medicine for my wife. please for God anyone help we & giving again life to my wife 🙏🙏🌹
#savelife #charity #help #مساعدة_انسانية
Fandt lige dette  gamle billede, taget under en indlæggelse på Ålborg sygehus, hvor jeg har fået konstateret endnu en blodsygdom PNH. Jeg kan huske, at jeg efter flere dages indlæggelse spørg en reservelæge, hvornår jeg må komme hjem. Han kigger undrende og uforstående på mig og siger: “Du kommer ikke hjem foreløbigt”. Det er 11 år siden. I dag er det 7 år siden jeg startede op på Soliris (medicin for PNH). Til dags dato har jeg fået ca. 185 portioner i IV. Soliris The Wonder Drug. 
#pnh #paroxysmalnocturnalhemoglobinuria #aplastiskanæmi #aplasticanemia #bonemarrowfailure #knoglemarvssvigt #soliris #esbjerg #aalborg #aamds  @aamdsif @aplasticanemiawarriorsunite @aplastic_anemia_awareness @aplasticanemiaresearchfund #soliristhewonderdrug @apasticanemiaa #denmark
Fandt lige dette gamle billede, taget under en indlæggelse på Ålborg sygehus, hvor jeg har fået konstateret endnu en blodsygdom PNH. Jeg kan huske, at jeg efter flere dages indlæggelse spørg en reservelæge, hvornår jeg må komme hjem. Han kigger undrende og uforstående på mig og siger: “Du kommer ikke hjem foreløbigt”. Det er 11 år siden. I dag er det 7 år siden jeg startede op på Soliris (medicin for PNH). Til dags dato har jeg fået ca. 185 portioner i IV. Soliris The Wonder Drug. #pnh  #paroxysmalnocturnalhemoglobinuria  #aplastiskanæmi  #aplasticanemia  #bonemarrowfailure  #knoglemarvssvigt  #soliris  #esbjerg  #aalborg  #aamds  @aamdsif @aplasticanemiawarriorsunite @aplastic_anemia_awareness @aplasticanemiaresearchfund #soliristhewonderdrug  @apasticanemiaa #denmark 
hi. i need help to buy #Soliris medicine for my wife. please help us & Save her life 🙏 with help us giving again life to my wife.

#help #charity #medicine #savelife
من خادم الله الصغير إلى أمير اللطف والإنسانية.
هذا الفيديو لك.
أطلب منك أن تأخذني وأنقذ حياة زوجتي.
لديه حالة دموية ونحتاج إلى مساعدة لعلاج مرضها.

نتطلع إلى لطفك ولطفك ، حظاً سعيداً ودودة.
ليس لنا ملجأ آخر سوى الله ، ولم يساعدنا أحد.
لقد سمعت الكثير عن كرم أمير الكويت وشعبه.

#امير_كويت #اميرالانسانيه #شيخ_صباح #مساعدة_انسانية #مساعدة_الاخرين #help 
@fahadnalsabah @hhshksabah @kasnms @drabeeralgendey @officiall.mariamelaziizy @diabeteschannel_kuwait @dalal_ns
من خادم الله الصغير إلى أمير اللطف والإنسانية. هذا الفيديو لك. أطلب منك أن تأخذني وأنقذ حياة زوجتي. لديه حالة دموية ونحتاج إلى مساعدة لعلاج مرضها. نتطلع إلى لطفك ولطفك ، حظاً سعيداً ودودة. ليس لنا ملجأ آخر سوى الله ، ولم يساعدنا أحد. لقد سمعت الكثير عن كرم أمير الكويت وشعبه. #امير_كويت  #اميرالانسانيه  #شيخ_صباح  #مساعدة_انسانية  #مساعدة_الاخرين  #help  @fahadnalsabah @hhshksabah @kasnms @drabeeralgendey @officiall.mariamelaziizy @diabeteschannel_kuwait @dalal_ns
I need help to buy #soliris medicine for my wife. I have one pair noble & hand made carpet for sale. please help me or buy my carpets & save my wife life. 🙏

Please put the picture of my carpet in your profile and write that need help for treatment.
Perhaps a good person was found and bought from us.
I beg you.
My wife's life is in danger.  with this, helping we for save my wife's life.

يرجى وضع صورة سجادتي في ملفك الشخصي والكتابة التي تحتاج إلى مساعدة للعلاج.
ربما تم العثور على شخص جيد واشترى منا.
أرجوك.
حياة زوجتي في خطر. مع هذا ، مما يساعدنا على إنقاذ حياة زوجتي.

Пожалуйста, поместите изображение моего ковра в свой профиль и напишите, что вам нужна помощь для лечения.
Возможно, хороший человек был найден и куплен у нас.
Я просил тебя.
Жизнь моей жены в опасности. с этим, помогая нам спасти жизнь моей жены.
I need help to buy #soliris  medicine for my wife. I have one pair noble & hand made carpet for sale. please help me or buy my carpets & save my wife life. 🙏 Please put the picture of my carpet in your profile and write that need help for treatment. Perhaps a good person was found and bought from us. I beg you. My wife's life is in danger. with this, helping we for save my wife's life. يرجى وضع صورة سجادتي في ملفك الشخصي والكتابة التي تحتاج إلى مساعدة للعلاج. ربما تم العثور على شخص جيد واشترى منا. أرجوك. حياة زوجتي في خطر. مع هذا ، مما يساعدنا على إنقاذ حياة زوجتي. Пожалуйста, поместите изображение моего ковра в свой профиль и напишите, что вам нужна помощь для лечения. Возможно, хороший человек был найден и куплен у нас. Я просил тебя. Жизнь моей жены в опасности. с этим, помогая нам спасти жизнь моей жены.
please ... for Godsake 🙏🙏🙏 i need help to buy #Soliris
medicine for my wife. please help we & giving again life to her . 🙏🌹
هل هناك أي شخص هنا لمساعدتي في شراء الأدوية لعلاج زوجتي بسبب الله والإنسانية.
أنا حقا بحاجة للمساعدة.
بسبب الله يتم إنقاذ حياة زوجتي ... #charity #help #god #bless #health #allah #kuwaithelp #kuwaitcarpet #bahrain #مساعدة_انسانية #مساعدة_الاخرين
please ... for Godsake 🙏🙏🙏 i need help to buy #Soliris  medicine for my wife. please help we & giving again life to her . 🙏🌹 هل هناك أي شخص هنا لمساعدتي في شراء الأدوية لعلاج زوجتي بسبب الله والإنسانية. أنا حقا بحاجة للمساعدة. بسبب الله يتم إنقاذ حياة زوجتي ... #charity  #help  #god  #bless  #health  #allah  #kuwaithelp  #kuwaitcarpet  #bahrain  #مساعدة_انسانية  #مساعدة_الاخرين 
K.O.S. SCAR & BOB MARLEY. #REDBLOOD #DANGERZONE #MARLEY #KENNELOFSPARTAN #SOLIRIS&SOLAPUPS@1YR OLD
Hi.

I need help to buy #soliris medicine for my wife. I have one pair noble & hand made carpet for sale. please with buy my carpets helping we & save my wife life. 🙏

#forsale #help #carpet #carpetbuyers #kuwaitcarpets #kuwaitcarpet #kuwaithelp #carpets
I have one pair noble & hand made carpet for sale. i need to buy #soliris medicine for my wife. please buy my carpets & save my wife life. 🙏

#carpet #carpetbuyers #help #handmadecarpet
hi. i need help to buy #soliris medicine for my wife. please help we & save her life 🙏🙏🌹
hi. i need help to buy #soliris  medicine for my wife. please help we & save her life 🙏🙏🌹
My boy and me talking about #soliris @alexionpharmaceuticals and my story.
My boy and me talking about #soliris  @alexionpharmaceuticals and my story.
I need help to buy #soliris
#medicine
for my wife. but this ampoule very expensive. we sold our home but can buy only 1 of ampoule. 
After selling our house and other equipment to treat my wife, my only origin to the world are the two carpets my mother wore to them. Original and very quality.
I was not willing to change it with anything because it was a memorial to my mother, but my wife's life was more valuable than the two carpets.
Please help me and I will send you from these two carpets. .

بعد بيع منزلنا ومعدات أخرى لعلاج زوجتي ، أصلتي الوحيدة إلى العالم هي السجادان اللتان ارتدتهما أمي. أصلي وجودة عالية.
لم أكن على استعداد لتغييرها مع أي شيء لأنه كان نصب تذكاري لأمي ، ولكن كانت حياة زوجتي أكثر قيمة من السجاد اثنين.
الرجاء مساعدتي وسأرسل لك من هذه السجاد اثنين.

После продажи нашего дома и другого оборудования для лечения моей жены, мое единственное происхождение в мире - это два ковры, которые моя мать носила для них. Оригинальное и очень качественное.
Я не хотел ничего менять, потому что это был мемориал моей матери, но жизнь моей жены была более ценной, чем два ковра.
Пожалуйста, помогите мне, и я пошлю вас из этих двух ковров.

please help we & giving again life to my wife.
I need help to buy #soliris  #medicine  for my wife. but this ampoule very expensive. we sold our home but can buy only 1 of ampoule. After selling our house and other equipment to treat my wife, my only origin to the world are the two carpets my mother wore to them. Original and very quality. I was not willing to change it with anything because it was a memorial to my mother, but my wife's life was more valuable than the two carpets. Please help me and I will send you from these two carpets. . بعد بيع منزلنا ومعدات أخرى لعلاج زوجتي ، أصلتي الوحيدة إلى العالم هي السجادان اللتان ارتدتهما أمي. أصلي وجودة عالية. لم أكن على استعداد لتغييرها مع أي شيء لأنه كان نصب تذكاري لأمي ، ولكن كانت حياة زوجتي أكثر قيمة من السجاد اثنين. الرجاء مساعدتي وسأرسل لك من هذه السجاد اثنين. После продажи нашего дома и другого оборудования для лечения моей жены, мое единственное происхождение в мире - это два ковры, которые моя мать носила для них. Оригинальное и очень качественное. Я не хотел ничего менять, потому что это был мемориал моей матери, но жизнь моей жены была более ценной, чем два ковра. Пожалуйста, помогите мне, и я пошлю вас из этих двух ковров. please help we & giving again life to my wife.
i need help to buy #soliris medicine for my wife. please with 65000 $ help we & giving again life to my wife 🙏
i need help to buy #soliris  medicine for my wife. please with 65000 $ help we & giving again life to my wife 🙏
Hoje foi dia de colocar o cateter❗️
O cateter utilizado é também conhecido como cateter totalmente implantável ou port-a-cath.
Ele consiste em um dispositivo composto por um canudo longo que fica posicionado dentro de uma veia de grande calibre ligado  a um reservatório localizado abaixo da pele.
Nesse reservatório será realizada a punção e infusão da medicação. #todospelavitoriadeianecontraohpn
#todoscontraohpn 
#alutadeianecontraohpn
#doação
#ajudecomamor
#ajudeiane 
#façaobem
#soliris
#eculizumab 
#minhavidanaotempreco
#TODOSpelosRAROS
#TODOSpelaVIDA
#EuDiscordoConitec
#ConsultaPública
———————————————
CAIXA
Agência.: 4166 | Conta.: 000222069 | Op.: 013
CPF: 002.808.031-92
Favorecido: Iane Pereira Lacerda

Aplicativo Joyz: alutadeianecontraohpn 
Vakinha online: A luta contra o HPN
Hoje foi dia de colocar o cateter❗️ O cateter utilizado é também conhecido como cateter totalmente implantável ou port-a-cath. Ele consiste em um dispositivo composto por um canudo longo que fica posicionado dentro de uma veia de grande calibre ligado  a um reservatório localizado abaixo da pele. Nesse reservatório será realizada a punção e infusão da medicação. #todospelavitoriadeianecontraohpn  #todoscontraohpn  #alutadeianecontraohpn  #doação  #ajudecomamor  #ajudeiane  #façaobem  #soliris  #eculizumab  #minhavidanaotempreco  #TODOSpelosRAROS  #TODOSpelaVIDA  #EuDiscordoConitec  #ConsultaPública  ——————————————— CAIXA Agência.: 4166 | Conta.: 000222069 | Op.: 013 CPF: 002.808.031-92 Favorecido: Iane Pereira Lacerda Aplicativo Joyz: alutadeianecontraohpn Vakinha online: A luta contra o HPN
Sharing my @alexionpharmaceuticals #Soliris journey.
Sharing my @alexionpharmaceuticals #Soliris  journey.
please help me ...
I ask you for help. My wife has got a bloody condition and I have to give her an ampoule of #soliris . This drug is very expensive and we can not afford it. We sold our home and started the treatment. But we need money to continue the treatment. I ask you to help me and save my wife and give life again to him and me.

#help #buymedicine #medicine #ampoule #💉 🙏🙏😷😷
please help me ... I ask you for help. My wife has got a bloody condition and I have to give her an ampoule of #soliris  . This drug is very expensive and we can not afford it. We sold our home and started the treatment. But we need money to continue the treatment. I ask you to help me and save my wife and give life again to him and me. #help  #buymedicine  #medicine  #ampoule  #💉 🙏🙏😷😷
خدای من؛  هیچکس مرا یاری و کمک نکرد.
خودت معجزه ای کن و همسرم را نجات بده.
خدایا کجایی .

يا إلهي ، لم يساعدني أحد أو ساعدني.
جعل معجزة وأنقذ زوجتي.
اين انت يا رب؟

My God; no one helped or helped me.
Make a miracle and save my wife.
Where are you GOD ?

#soliris #الله #هوالشافی #help #helpmehelpyou #god #humanity #againlife
خدای من؛ هیچکس مرا یاری و کمک نکرد. خودت معجزه ای کن و همسرم را نجات بده. خدایا کجایی . يا إلهي ، لم يساعدني أحد أو ساعدني. جعل معجزة وأنقذ زوجتي. اين انت يا رب؟ My God; no one helped or helped me. Make a miracle and save my wife. Where are you GOD ? #soliris  #الله  #هوالشافی  #help  #helpmehelpyou  #god  #humanity  #againlife 
#Repost @solirismusic
・・・
😈😈😈😈😈
.
.
#soliris #bars #brooklyn #fire #idoesthis #endyourcareer with 4 bars 😂 #dontfuckwithme #killarankz ♥️
#laughinallthewaytothebank #hihaters 👋🏼
#respect #womanzworldmusic 🎼 #Lyricist #RECKRUMSTUDIO
Pessoal, peço de coração que leiam até o final! A CONITEC (Comissão Nacional de Incorporação de Tecnologias no SUS) lançou uma Consulta Pública n° 63 que deve ser preenchida de 16 de outubro a 3 de novembro de 2018. Essa consulta pública visa analisar a incorporação do medicamento Soliris Eculizumab na lista de medicamentos do SUS. Esse medicamento é o único disponível no mundo para tratamento da HPN Hemoglobinúria Paroxística Noturna. Hoje somente com ações judiciais se consegue o medicamento, se ele for incorporado a lista do SUS irá facilitar muito o acesso ao mesmo. Os membros da CONITEC recomendaram pela NÃO incorporação do medicamento, argumentando o custo do mesmo. Cabe a nós sociedade, usuários, cuidadores, grupos de interesse e especialistas preenchermos essa consulta pública A FAVOR DA INCORPORAÇĂO DO MEDICAMENTO ! O LINK ESTÁ NA BIOGRAFIA DO INSTAGRAM, POR FAVOR PESSOAL, REALIZEM ESSA PESQUISA 🙏🏻❤️#todospelavitoriadeianecontraohpn 
#todoscontraohpn 
#alutadeianecontraohpn 
#doaçãocomamor 
#ajudecomamor 
#ajudeiane 
#façaobem 
#soliris 
#eculizumab 
#minhavidanãotempreço 
#todospelosraros 
#todospelavida 
#eudiscordoconitec 
#consultapública ———————————————
CAIXA
Agência.: 4166 | Conta.: 000222069 | Op.: 013
CPF: 002.808.031-92
Favorecido: Iane Pereira Lacerda

Aplicativo Joyz: alutadeianecontraohpn 
Vakinha online: A luta contra o HPN
Pessoal, peço de coração que leiam até o final! A CONITEC (Comissão Nacional de Incorporação de Tecnologias no SUS) lançou uma Consulta Pública n° 63 que deve ser preenchida de 16 de outubro a 3 de novembro de 2018. Essa consulta pública visa analisar a incorporação do medicamento Soliris Eculizumab na lista de medicamentos do SUS. Esse medicamento é o único disponível no mundo para tratamento da HPN Hemoglobinúria Paroxística Noturna. Hoje somente com ações judiciais se consegue o medicamento, se ele for incorporado a lista do SUS irá facilitar muito o acesso ao mesmo. Os membros da CONITEC recomendaram pela NÃO incorporação do medicamento, argumentando o custo do mesmo. Cabe a nós sociedade, usuários, cuidadores, grupos de interesse e especialistas preenchermos essa consulta pública A FAVOR DA INCORPORAÇĂO DO MEDICAMENTO ! O LINK ESTÁ NA BIOGRAFIA DO INSTAGRAM, POR FAVOR PESSOAL, REALIZEM ESSA PESQUISA 🙏🏻❤️#todospelavitoriadeianecontraohpn  #todoscontraohpn  #alutadeianecontraohpn  #doaçãocomamor  #ajudecomamor  #ajudeiane  #façaobem  #soliris  #eculizumab  #minhavidanãotempreço  #todospelosraros  #todospelavida  #eudiscordoconitec  #consultapública  ——————————————— CAIXA Agência.: 4166 | Conta.: 000222069 | Op.: 013 CPF: 002.808.031-92 Favorecido: Iane Pereira Lacerda Aplicativo Joyz: alutadeianecontraohpn Vakinha online: A luta contra o HPN
This is my niece’s lifeline now. She was diagnosed with a very rare blood disease called #ahus Along with her kidney disease #fsgs. Through the kindness of others she has received six #bloodtransfusions and is on an FDA approved infusion #eculizumab. Hoping for a #kidneytransplant. #dialysis #kidneydisease #kidneydonor #kidneyfailure #kidneywarrior #donateblood #americanredcross #soliris #ahusstrong
😈😈😈😈😈
.
.
#soliris #bars #brooklyn #fire #idoesthis #endyourcareer with 4 bars 😂 #dontfuckwithme #killarankz ♥️
#laughinallthewaytothebank #hihaters 👋🏼
#respect #womanzworldmusic 🎼 #lyricist
I got this #PowerPort, 1 year ago yesterday. This is my 3rd port in 4 years. 
Today, this port decided not to give a blood return. 🙄 we did all the "fun" things required to try to get a blood return, but my port/artery/blood gave us a big 🖕.
It's allowing us to put fluids in,  so I'm getting my #Soliris infusion today. 
I'm going to need my port to work on itself over the weekend though... cause Monday is my #Remicade infusion. 
Just remember, as my friend Alison says, 
#portsarenttheeasywayout
Happy Friday!
I got this #PowerPort , 1 year ago yesterday. This is my 3rd port in 4 years. Today, this port decided not to give a blood return. 🙄 we did all the "fun" things required to try to get a blood return, but my port/artery/blood gave us a big 🖕. It's allowing us to put fluids in, so I'm getting my #Soliris  infusion today. I'm going to need my port to work on itself over the weekend though... cause Monday is my #Remicade  infusion. Just remember, as my friend Alison says, #portsarenttheeasywayout  Happy Friday!
Estamos felizes com a vinda da Iane para casa, com sua ótima recuperação da cirurgia, com as doses emergências do medicamento Eculizumab (soliris) e com o carinho vindo de todos vocês! Mas a luta continua, e a Iane não tem condições de viver sem a medicação, se a medicação for interrompida é fatal! 😔 
Vamos continuar divulgando, doando, e pedindo a Deus pela misericórdia na vida dela, não podemos ficar sem o Eculizumab e não temos nenhum informação se o governo fornecerá mais doses!
Que Deus abençoe cada um de vocês, muitíssimo obrigada!!! #todospelavitoriadeianecontraohpn
#todoscontraohpn 
#alutadeianecontraohpn 
#doação 
#ajudecomamor 
#ajudeiane 
#façaobem 
#soliris 
#eculizumab 
#minhavidanãotempreço #todospelosraros 
#todospelavida ———————————————
CAIXA
Agência.: 4166 | Conta.: 000222069 | Op.: 013
CPF: 002.808.031-92
Favorecido: Iane Pereira Lacerda

Aplicativo Joyz: alutadeianecontraohpn 
Vakinha online: A luta contra o HPN
Estamos felizes com a vinda da Iane para casa, com sua ótima recuperação da cirurgia, com as doses emergências do medicamento Eculizumab (soliris) e com o carinho vindo de todos vocês! Mas a luta continua, e a Iane não tem condições de viver sem a medicação, se a medicação for interrompida é fatal! 😔 Vamos continuar divulgando, doando, e pedindo a Deus pela misericórdia na vida dela, não podemos ficar sem o Eculizumab e não temos nenhum informação se o governo fornecerá mais doses! Que Deus abençoe cada um de vocês, muitíssimo obrigada!!! #todospelavitoriadeianecontraohpn  #todoscontraohpn  #alutadeianecontraohpn  #doação  #ajudecomamor  #ajudeiane  #façaobem  #soliris  #eculizumab  #minhavidanãotempreço  #todospelosraros  #todospelavida  ——————————————— CAIXA Agência.: 4166 | Conta.: 000222069 | Op.: 013 CPF: 002.808.031-92 Favorecido: Iane Pereira Lacerda Aplicativo Joyz: alutadeianecontraohpn Vakinha online: A luta contra o HPN
BRASÍLIA — Quatro dias após o GLOBO revelar que três lotes de medicamento para tratar uma doença rara estavam retidos no aeroporto de Brasília , a Agência Nacional de Vigilância Sanitária (Anvisa) decidiu liberar a distribuição do remédio para os pacientes. São seis mil ampolas de uma droga chamada Soliris, compradas pelo governo por R$ 84,5 milhões, mas que, desde 28 de agosto, encontravam-se dentro de uma câmara fria no setor de cargas do aeroporto.
#todospelosraros #soliris #HPN #SHUa #vidasraras 
https://m.oglobo.globo.com/sociedade/saude/carga-de-medicamento-retida-por-um-mes-no-aeroporto-de-brasilia-liberada-para-pacientes-23131721?utm_source=Whatsapp
BRASÍLIA — Quatro dias após o GLOBO revelar que três lotes de medicamento para tratar uma doença rara estavam retidos no aeroporto de Brasília , a Agência Nacional de Vigilância Sanitária (Anvisa) decidiu liberar a distribuição do remédio para os pacientes. São seis mil ampolas de uma droga chamada Soliris, compradas pelo governo por R$ 84,5 milhões, mas que, desde 28 de agosto, encontravam-se dentro de uma câmara fria no setor de cargas do aeroporto. #todospelosraros  #soliris  #HPN  #SHUa  #vidasraras  https://m.oglobo.globo.com/sociedade/saude/carga-de-medicamento-retida-por-um-mes-no-aeroporto-de-brasilia-liberada-para-pacientes-23131721?utm_source=Whatsapp
Happy Friday!! Infusion day for me! #soliris #thankful #friday
Bom dia, pessoal!
A Iane realizou uma cirurgia para a síndrome nutcracker, que também é conhecida como a síndrome de quebra-nozes (compressão da veia renal esquerda pela aorta e pela artéria mesentérica superior, tem esse nome porque parece que a artéria esmaga a veia renal como um quebrador de nozes mesmo).
A cirurgia foi realizada para a prevenção de possíveis tromboses e na tentativa de diminuir a forte de que a Iane sente na parte esquerda do abdômen. #todospelavitoriadeianecontraohpn
#todoscontraohpn 
#alutadeianecontraohpn
#doação
#ajudecomamor
#ajudeiane 
#façaobem
#soliris
#eculizumab 
#minhavidanãotempreço
Bom dia, pessoal! A Iane realizou uma cirurgia para a síndrome nutcracker, que também é conhecida como a síndrome de quebra-nozes (compressão da veia renal esquerda pela aorta e pela artéria mesentérica superior, tem esse nome porque parece que a artéria esmaga a veia renal como um quebrador de nozes mesmo). A cirurgia foi realizada para a prevenção de possíveis tromboses e na tentativa de diminuir a forte de que a Iane sente na parte esquerda do abdômen. #todospelavitoriadeianecontraohpn  #todoscontraohpn  #alutadeianecontraohpn  #doação  #ajudecomamor  #ajudeiane  #façaobem  #soliris  #eculizumab  #minhavidanãotempreço 
Ontem a Iane recebeu mais uma dose emergencial do medicamento Eculizumab (soliris), o governo não disponibilizou o medicamento para o tratamento vitalício da doença, ele disponibilizou algumas doses apenas para tirá-la do risco de vida !! Quem puder ajudar, da maneira que puder, ficaremos felizes e gratos, pois não podemos ficar parados esperando pela boa vontade do governo ! 
#todospelavitoriadeianecontraohpn
#todoscontraohpn 
#alutadeianecontraohpn
#doação
#ajudecomamor
#ajudeiane 
#façaobem
#soliris
#eculizumab 
#minhavidanaotempreco
———————————————
CAIXA
Agência.: 4166 | Conta.: 000222069 | Op.: 013
CPF: 002.808.031-92
Favorecido: Iane Pereira Lacerda

Aplicativo Joyz: alutadeianecontraohpn 
Vakinha online: A luta contra o HPN
Ontem a Iane recebeu mais uma dose emergencial do medicamento Eculizumab (soliris), o governo não disponibilizou o medicamento para o tratamento vitalício da doença, ele disponibilizou algumas doses apenas para tirá-la do risco de vida !! Quem puder ajudar, da maneira que puder, ficaremos felizes e gratos, pois não podemos ficar parados esperando pela boa vontade do governo ! #todospelavitoriadeianecontraohpn  #todoscontraohpn  #alutadeianecontraohpn  #doação  #ajudecomamor  #ajudeiane  #façaobem  #soliris  #eculizumab  #minhavidanaotempreco  ——————————————— CAIXA Agência.: 4166 | Conta.: 000222069 | Op.: 013 CPF: 002.808.031-92 Favorecido: Iane Pereira Lacerda Aplicativo Joyz: alutadeianecontraohpn Vakinha online: A luta contra o HPN
#Soliris ( the #chemo type med I am on) #infusion went fine. Then I  went to the pharmacy and to get groceries and when I was loading them I got weak and started dropping everything when I was putting them in the car.  because my muscles decided not to work and not only were my arms weak but my hands wouldn't grasp anything  and then I needed gas so I went to the station where I know the guy and he knows about how sick I am and he came to help me and then I started crying while talking to him because I'm so freaking stressed and that's embarrassing. I'm a big mess #myastheniagravis #mg #mgwontstopme #lupus #rhumatoidarthritis #sjogrenssyndrome
#Soliris  ( the #chemo  type med I am on) #infusion  went fine. Then I went to the pharmacy and to get groceries and when I was loading them I got weak and started dropping everything when I was putting them in the car. because my muscles decided not to work and not only were my arms weak but my hands wouldn't grasp anything and then I needed gas so I went to the station where I know the guy and he knows about how sick I am and he came to help me and then I started crying while talking to him because I'm so freaking stressed and that's embarrassing. I'm a big mess #myastheniagravis  #mg  #mgwontstopme  #lupus  #rhumatoidarthritis  #sjogrenssyndrome 
Hit the link in my bio and listen now! Don’t forget to give me a thumbs up or subscribe to my channel cuz I’m about to drop some New Music and you don’t wanna miss it! Thanks guys! ♥️🙏🏼 #soliris #womanzworldmusic #2018 #hot97 #unsignedartist #femalemc #lyricist #fire
Go listen to this song I just added to my playlist. @doomdawiz good looks on the beat 💯#original #rap #hiphop #unsignedartist #soliris #femalemc 
Another mans trash is another woman’s treasure💎#facts of #life
É com imensa alegria que informamos a todos que Iane recebeu, emergencialmente, o medicamento Soliris, devido o estado gravíssimo dela. Desde já agradeço a todos pelas orações e ajuda, um agradecimento em especial a AFAG, que desde o início nos ajudam nessa luta. A luta continua, que vocês possam continuar nos ajudando com divulgações, orações e que o governo nos forneça outras doses desse medicamento, para darmos, de fato, o início completo do tratamento, que é essencial para a qualidade de vida da Iane.
#todospelavitoriadeianecontraohpn
#todoscontraohpn 
#alutadeianecontraohpn
#doação
#ajudecomamor
#ajudeiane 
#façaobem
#soliris
#eculizumab  #afag
É com imensa alegria que informamos a todos que Iane recebeu, emergencialmente, o medicamento Soliris, devido o estado gravíssimo dela. Desde já agradeço a todos pelas orações e ajuda, um agradecimento em especial a AFAG, que desde o início nos ajudam nessa luta. A luta continua, que vocês possam continuar nos ajudando com divulgações, orações e que o governo nos forneça outras doses desse medicamento, para darmos, de fato, o início completo do tratamento, que é essencial para a qualidade de vida da Iane. #todospelavitoriadeianecontraohpn  #todoscontraohpn  #alutadeianecontraohpn  #doação  #ajudecomamor  #ajudeiane  #façaobem  #soliris  #eculizumab  #afag 
There to see the best performance! #ChillFriday #StrippysOutHereSuck 🙄 #Soliris
Eita Mundinho que gira viu kkkkk... Nunca me imaginei  exercendo esse papel na vida de um paciente como eu #HPN
#SHUAHPN  #SOLIRIS
Eita Mundinho que gira viu kkkkk... Nunca me imaginei exercendo esse papel na vida de um paciente como eu #HPN  #SHUAHPN  #SOLIRIS 
Headed to Washington DC with my amazing mama today for her presentation for #Soliris #Alexion #myastheniagravis #MGStars #MG!! We havent been on a plan since I was 3!
Whenever I feel ugly, I just go to snap chat and I just become a cute little bunny lol 😂 #snapchats #wordsofwisdom #beacutie #soliris #unsignedBunny
Graças a Deus, a IANE está se recuperando da forte crise; gostaria de agradecer a todos pelas orações, pelo carinho e pela atenção, seguimos firmes nessa luta e contamos com o importantíssimo apoio de vocês❣️Muitíssimo obrigado a todos! #alutadeianecontraohpn #todoscontraohpn #doação #ajudecomamor #façaobem #espalheobem #soliris #eculizumab #todospelavitoriadeianecontraohpn —————————————————————————
#bedifferent #throwback #destinyschild #soliris #songwriter #vibes #freestyle Just a little song I wrote #justbecause #love is #beautiful 
@beyonce @kellyrowland