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Diffuse systemic scleroderma

After many many years of searching for answers I finally found the right doctor and got a diagnosis of diffuse systemic scleroderma. It’s a battle… Continue reading Diffuse systemic scleroderma

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Sindrome de Prader Will

Eu nasci como um bebê qualquer, mas conforme o tempo foi passando, pode-se constatar que eu estava engordando muito, não engatinhava, não falava e então… Continue reading Sindrome de Prader Will

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United States

I also have EDS, Ehlers-Danlos Syndrome, and serious heart issues. I am 32 years old and each time I go to a doctor they diagnose… Continue reading United States

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United States

I also have EDS, Ehlers-Danlos Syndrome, and serious heart issues. I am 32 years old and each time I go to a doctor they diagnose… Continue reading United States

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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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