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TMAU

Trimethylaminuria (TMAU; primary trimethylaminuria), also known as fish odor syndrome or fish malodor syndrome, is a rare metabolic disorder that causes a defect in the… Continue reading TMAU

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Strayer University

I’m a 63 years old woman, and it wasn’t until I was 50 I found out I had one of my three rare diseases. I… Continue reading Strayer University

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Disabled at 71 y.o. by rare disease

In the middle of my active first year of retirement, I became disabled in one week due to my feet becoming numb and my hands… Continue reading Disabled at 71 y.o. by rare disease

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Another mystery disease – PMP (Pseudomyxoma Peritonei)

I was diagnosed with Pseudomyxoma peritonei (PMP), which is a rare cancer that usually starts in the appendix, in July 2016. It’s a mucin that… Continue reading Another mystery disease – PMP (Pseudomyxoma Peritonei)

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Ms.

My son has neurofibromatosis. he has had over 45 surgeries and has rods in his spine. Thankfully, and through with so much strength, he is… Continue reading Ms.

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Walking Miracle

In Jan. of 2012 I went into the hospital with a heart attack of the widow maker and was told I was lucky that I… Continue reading Walking Miracle

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Gods Love

Hello I am a 51 year old woman,my name is Simona I was born with Von Wiiedbrands Disease and Quebec Platelet Syndrome and Luddles Disease.… Continue reading Gods Love

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PNH

I am 16 years old living with a rare life threatening blood disease called pnh. It causes my bone marrow to fail and blood platelets… Continue reading PNH

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RSD/CRPS

When I was 17 years old I was in a horrific golf cart accident. I was riding shotgun and the driver made an incredibly sharp… Continue reading RSD/CRPS

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