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Hi there!

My name is Jill and after 30yrs and twice as much doctors and specialists I found out I have Ehlers-Danlos syndrome. Its a connective tissue… Continue reading Hi there!

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My Ledderhose/Dupuytren’s Disease Story

MY STORY: In light of Rare Disease Month, I wanted to share my story with many of you that do not know it. I was… Continue reading My Ledderhose/Dupuytren’s Disease Story

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IPF (Idiopathic Pulmonary Fibrosis)

My name is Colleen and I’m 53 and reside in Michigan. In early 2016, I was having difficulty breathing and new I had to get… Continue reading IPF (Idiopathic Pulmonary Fibrosis)

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USA

Hi! I am a Hypoparathyroidism patient. I was diagnosed 6 years ago after a routine thyroidectomy. My whole life has changed and the way I… Continue reading USA

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Ataxia! Or take a taxi!

Hi! My name is Valerie, Irish by birth I live in Rush, Co. Dublin. I have Ataxia in addition to asthma, a brain tumour and… Continue reading Ataxia! Or take a taxi!

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Behind the grin…

Rare indeed! At the age of 22, I lost control of my body. I was on a wheelchair within 4 days, unable to walk, slurred… Continue reading Behind the grin…

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Familial Mediterranean Fever

At 28 I was diagnosed with Familial Mediterranean Fever after my blood was sent to the NAT. Institute of Health for genetic testing which confirmed… Continue reading Familial Mediterranean Fever

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Latvia

Hello everyone, we are from Latvia, our son’s diagnosis KOOLEN-DE VRIES SINDROM. He is 3.6 years. The diagnosis have put us a month ago, many… Continue reading Latvia

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Heat and sun-related undiagnosed health condition

I was born in a hot country and lived in hot countries until I was in my late twenties.Ever since I can remember, though, I’ve… Continue reading Heat and sun-related undiagnosed health condition

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