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Sou forte

Tenho 17 anos , foi diagnosticado minha síndrome aos meus 3 anos de idade .medicos disseram aos 10 anos eu já não estaria neste mundo… Continue reading Sou forte

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Only a chapter in my life. Not the whole story.

I was diagnosed in 2016 with Superior Mesenteric Artery Syndrome. I’ve gotten down to as low as 91 lbs. I’m currently on feeding tube number… Continue reading Only a chapter in my life. Not the whole story.

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Growing up with LGMD

We are pleased to present to you the documentary, “Growing up with LGMD”, featuring Sophie, Brooklyn, and Sammy. These young ladies all live with Limb-Girdle… Continue reading Growing up with LGMD

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Doença hageman fator coagulação sangue

VITÓRIA TEM 7 ANOS ATUALMENTE DES PEQUENA QUE COMEÇOU SURGIR MANCHAS ROXAS PELO CORPO ASSIM FORAM MESES ATRÁS RESULTADO NADA FORAM MESES FAZENDO EXAMES NADA… Continue reading Doença hageman fator coagulação sangue

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The fight against PSP Progressive Supranuclear Palsy

I’d like to tell you my story. Progressive Supranuclear Palsy (PSP) is a very rare terminal brain disease that slowly kills off the stem cells… Continue reading The fight against PSP Progressive Supranuclear Palsy

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What a shock

In 2022 I was eventually diagnosed with Alexanders disease. I was 70 years old and didn’t expect that! People who see me now see an… Continue reading What a shock

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Finding Strength in Vulnerability – A Rare Disease Day Reflection

Every experience in life serves a purpose. Living with Factor V Deficiency (Para-hemophilia), a rare bleeding disorder, has shaped my journey in ways I never… Continue reading Finding Strength in Vulnerability – A Rare Disease Day Reflection

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Türk Kahraman

39+5 de 3kg 700gr olarak bir erkek bebek doğdun. Doğumumdan 1 hafta sonra 10 gün küvezde kaldım üst solunum yolu enfeksiyonu geçirdim. 40 günlükken tanı… Continue reading Türk Kahraman

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(NDPH) Being 1 in 100,000

New Daily Persistent Headache has been the defining factor of my life since the day it started on July 24, 2016. It’s very similar to… Continue reading (NDPH) Being 1 in 100,000

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