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Giving it all to God!!

I was diagnosed with (SMAS) on 11/26/10 and spent three weeks in three seperate hospitals that doctors knew nothing about this rare disease.  I then… Continue reading Giving it all to God!!

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Defeating Duane Syndrome

After daily struggle with Duane syndrome for 30 years I finally won the fight This is my story My name is Dana, I’m Palestinian by… Continue reading Defeating Duane Syndrome

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My journey: Myofibular myopathy

I’m 13 years old. I was born with a disease myofibular myopathy. I was never supposed to walk, but I did, differently. I would shift… Continue reading My journey: Myofibular myopathy

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3 YOUNG BOYS IN SAME FAMILY ARE AFFECTED

My name is Lidia, my husband’s name is Adrien. We are the parents of three beautiful and wonderful boys. And we are here to help… Continue reading 3 YOUNG BOYS IN SAME FAMILY ARE AFFECTED

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Desbuquois Sendromu

Bizim hikayemiz 21.06.2013 yılında doğan oğlum Mithat’ a desbuquois sendromu teşhisi konuldu. Nadir hastalık olduğunu öğrendiğimizde çok üzüldük.Lakin zamanla alışıyor insan.Şu an 4 yaşını geçti… Continue reading Desbuquois Sendromu

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Takayasu arteritis

The world ends when we wanted to end”– Hi! I’m Jackie..mom of 3 married 3 years to my best friend. I got diagnosed this past… Continue reading Takayasu arteritis

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Charcot-Marie-Tooth & Narcolepsy

I’m Tyler and I’m 17. When I was 15 I was diagnosed with both of these. They affect me moderately so I’ve devoted myself to… Continue reading Charcot-Marie-Tooth & Narcolepsy

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