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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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You Are Not Alone

As a young child growing up, I was super active. I’ve dealt with asthma and allergies since before I could remember so it was never… Continue reading You Are Not Alone

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Klippel Trenaunay Weber Syndrome

My name is Lucy , I’m 13 and when I was 9 I was diagnosed with Klippel Trenaunay Weber Syndrome and Hemihyperplasia , this means… Continue reading Klippel Trenaunay Weber Syndrome

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Scars of MHE

One thing I can vividly remember through the brain fog is looking at my legs in the mirror before my first surgery. I was born… Continue reading Scars of MHE

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Langerhans cell histiocytosis

In 2014 I saw a Doctor with a small lump on the side of my neck, had an ultrasound. She rang and said I had… Continue reading Langerhans cell histiocytosis

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Finding my Stripes

Hello fellow rare disease fighters! I was diagnosed with Ehlers Danlos syndrome at 17 in 2011. After having 5 unnecessary surgeries we finally got a… Continue reading Finding my Stripes

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Singing throughout the Pain

I am a retired recitalist/ music teacher/performing artist/educator and composer living in Arizona.With several rare autoimmune (IgG, IMg, D3 and B12 deficiencies) and 3 lymphatic… Continue reading Singing throughout the Pain

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