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My live with retinitis pigmentosa and a retina implant

My name is Dorothea, I am 47 years old and live in a small village in germany. When I was about 3 years old, my… Continue reading My live with retinitis pigmentosa and a retina implant

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A long road to porphyria diagnosis

Like many people suffering from porphyria, I have been dealing with the disease longer than I knew. My diagnosis was delayed and convoluted due to… Continue reading A long road to porphyria diagnosis

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My son’s story

My step grandson and his brother came to live with us when he was 3 1/2 years old. We had know since his birth that… Continue reading My son’s story

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My son’s story

My step grandson and his brother came to live with us when he was 3 1/2 years old. We had know since his birth that… Continue reading My son’s story

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DRESS Syndrome: Preparing to Die.

There’s a humbling chill in learning there isn’t anything doctors can do to prolong the great inevitable. To date, it’s the hardest thing I’ve ever… Continue reading DRESS Syndrome: Preparing to Die.

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Dercums disease

I go under the name Suzi More…my site is www.mysuzimore.com where almost 200 tracks of songs I have produced are located. Almost all of the… Continue reading Dercums disease

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BBS

Hello there, My name is Aneeba I am 25 years old and I have bbs which I am bbs10. When I was a baby I… Continue reading BBS

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io non mi arrendo

Buongiorno mi chiamo lydia ho 46 anni e sono affetta da una malattia rara rene policistico bilaterale di 2 grado con conseguenza anche su altri… Continue reading io non mi arrendo

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CMT 4J

My 13 year old daughter has CMT 4J.CMT is a genetic condition that damages peripheral nerves. These nerves are responsible for passing on commands from… Continue reading CMT 4J

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