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PurA Syndrome – Carter Peddie

At three weeks old Carter contracted the respiratory syncytial virus (RSV), turned blue and stopped breathing. In the PICU Carter was on breathing and feeding… Continue reading PurA Syndrome – Carter Peddie

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Livedoid Vasculopathy

I’ve been living with LV (livedoid vasculopathy) for 5 years now, i’ve tried medicine after medicine, and many different doctors not really caring about it… Continue reading Livedoid Vasculopathy

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rear disease called autoimmune enteropathy

my name is Busisiwe mabedla i am 16 years old now and i am living with autoimmune enteropathy which is a very rear disease. when… Continue reading rear disease called autoimmune enteropathy

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My husband Larry

Larry had posterior cortial atrophy. Back of the brain. Lost most of his sight couldnt dress himself. His thinking process was effected. Passed away 5… Continue reading My husband Larry

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Curren’s Journey

My son is two years old, and has seen 12 different doctors. His weekly schedule is jammed packed with 11 hours of therapy – PT,… Continue reading Curren’s Journey

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Make Masto Known!

I hear all these wonderful stories about kids and adults with rare diseases, and how they function in life. I hear about rare disease day,… Continue reading Make Masto Known!

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Alexanders disease

My 2.5 little girl has recently been diagnosed with alexanders disease a very rare life threatning / changing / shortening disease !!:” devistating as she… Continue reading Alexanders disease

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Narcolepsy & Life

My name is Joseph, Im 13 and was diagnosed at 7 with narcolepsy with Cataplexy. Ever really sense then, the one person I had most… Continue reading Narcolepsy & Life

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