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Raynauds and Systemic Scleroderma

Diagnosed with Raynauds and Systemic Scleroderma in 1999. On no medication yet. Symptoms slighty coming on now. Going to visit Speecialists for the first time… Continue reading Raynauds and Systemic Scleroderma

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israel

Many of Neurofibromatosis (nf) does not mean anything. This is a rare genetic disease mainly in tumors all over the body, head nerves. Usually benign… Continue reading israel

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Tenho a doernça de Behçet

Chamo-me Paulo, tenho 43 anos e sofro da doença de Behçet. É uma doença inflamatória rara (HLA-B51) que me foi diagnosticada em 2013, mas que… Continue reading Tenho a doernça de Behçet

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Spasmotic Tortacolis or Cervical Dystonia Neorologic Disorder

It took so many years to be diagnosed. Tremors off the charts. Pain off the charts. Finally, DBS implantation and still, so much pain. Contortion… Continue reading Spasmotic Tortacolis or Cervical Dystonia Neorologic Disorder

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At least “Hard to Pronounce Disease” Day

Well, I guess a four-person family that has had an eosinophilic granuloma, Epstein Barr, Hashimotos, pulmonary emboli, necrotizing pancreatitis, aortic stenosis, Clostridium difficile and Proteus… Continue reading At least “Hard to Pronounce Disease” Day

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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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