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Solar Urticaria

I hsve Solar Urticaria This very rare disease inpacts 1 in 300,000 people. It causes severe hives and joint swelling within only seconds of UV… Continue reading Solar Urticaria

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My personal fight against ATAXIA

My Name is Christopher John DeHaven, and I would like to share my life and what I see going on in the world. This is… Continue reading My personal fight against ATAXIA

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Bartters Syndrome

I have Bartter Syndrome, a kidney problem thats inherited by recessive gene and low blood pressure, low potassium, low salt probably low magnesium.  Its diagnosed… Continue reading Bartters Syndrome

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Bartters Syndrome

I have Bartter Syndrome, a kidney problem thats inherited by recessive gene and low blood pressure, low potassium, low salt probably low magnesium.  Its diagnosed… Continue reading Bartters Syndrome

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Cmn-research

My daughter was born with cmn on the left side of her face covering 30% of her left eye and 25-30% of her face. There… Continue reading Cmn-research

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My life with Degenerative Spino-Cerebellar Ataxia

My name is Chris Phillips, I am 39 years old and I live in Worcester, South Africa. I was diagnosed with Degenerative Spino-Cerebellar Ataxia 3… Continue reading My life with Degenerative Spino-Cerebellar Ataxia

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With Faith Come Hope!

Our family joke was always “if we didn’t have bad luck, we wouldn’t have any luck at all.” We would all laugh at that statement… Continue reading With Faith Come Hope!

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1 of 13…

My 20 month old daughter Clara, who is the light of our world, was recently diagnosed with Progressive Myoclonic Epilepsy 6- a recessively inherited genetic… Continue reading 1 of 13…

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Fight The Itch, Save A Life

What is ICP? Let me tell you about my little boy… In December 2013 I had a really vivid dream that I gave birth to… Continue reading Fight The Itch, Save A Life

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