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Copernicus was wrong…

Copernicus was wrong: When it comes to the health of your child, the world revolves around them. My daughter Audra was just 15 and only… Continue reading Copernicus was wrong…

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Alone…yet not alone.

I will probably never meet another human with my disease. Only 3 out of every 1 million people get it. But, I will meet another… Continue reading Alone…yet not alone.

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Dupytren’s/Ledderhose Disease

In light of Rare Disease Month, I wanted to share my story with many of you that do not know it. I was diagnosed in… Continue reading Dupytren’s/Ledderhose Disease

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Tinman family

19 years ago my firstborn son was born. The Dr heard a murmur so we saw a cardigogist and discovered he had a hole in… Continue reading Tinman family

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Isabella Faith

Hello, my name is Krystal and i have a 2 1/2 year old daughter name Isabella Faith. Isabella was born with Mckusic Kaufman Syndrome and… Continue reading Isabella Faith

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FEARLESS!

April 8th, 2011 began my journey of going blind. Out of the blue that day at work, I felt off-balance and my eyes felt weird.… Continue reading FEARLESS!

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Life with Lymphedema

I was 13 years old the first time I felt the onset of lymphedema. At the time, I had no idea what lymphedema was, and… Continue reading Life with Lymphedema

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Combined Cobalamin Defect

I was Diagnosed with Combined Cobalamin Defect when I was 8 years old and have been a Non Paid Patient Human Research Subject for Children’s… Continue reading Combined Cobalamin Defect

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Living with a rare disease

Coming from a family of six siblings, we have three rare diseases and I am the one blessed with all of them. fortunately there are… Continue reading Living with a rare disease

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