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SUSAC SYNDROME (Eyes, Ears & Brain)

I have a rare autoimmune disease that has been diagnosed in approximately 475 people worldwide. SS is often misdiagnosed as Multiple Sclerosis, since it may… Continue reading SUSAC SYNDROME (Eyes, Ears & Brain)

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CDA type 1

Our son was born in 2010 via emergency c-section due to a low heart rate. After he was born, he was put on a ventilator… Continue reading CDA type 1

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Living with GO

Rare Disease Day, one of the most important days of the year for those of us who live a rare disease. At the age of… Continue reading Living with GO

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The Invisible Me

The Invisible Me “You look great for one so sick” or at least it’s what they say. “Why do you complain you don’t have to… Continue reading The Invisible Me

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Central Pain Syndrome: What would a cure mean?

Central pain syndrome, CPS (AKA thalamic pain and post-stroke pain) is an unimaginable, relentless, agonizing pain caused from damage to the central nervous system (brain… Continue reading Central Pain Syndrome: What would a cure mean?

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This is My Story

I spend my life medicated, but there is still pain; a lot of pain. It is unclear if I was born with or if I… Continue reading This is My Story

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GSD TYPE 1A

I have glycogen storage disease 1A. I am a freshman at Marshall County High , Benton, Kentucky. Dr. David Wienstien is my doctor. . Without… Continue reading GSD TYPE 1A

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Spinal Muscular Atrophy Type 1

Our daughter was born on the 12th of Agust 2015. She was our first baby. She was born 2700 kg and 53 sm. She was… Continue reading Spinal Muscular Atrophy Type 1

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My life with 2 NIH Rare Diseases

Hi Everyone! Thank you so much for taking the time to visit my page and hear my story… I am going to tell you about… Continue reading My life with 2 NIH Rare Diseases

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