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Living with PKU

My niece Hana was diagnosed with PKU in 2014 at just 10 days old. Just when we thought we have thought we have healthy baby… Continue reading Living with PKU

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Life with Behçet disease

My name is Sophie I got diagnosed with Behçet disease last October in the UK. I have had all symptoms from mouth sores to sore eye,… Continue reading Life with Behçet disease

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Not Defined by My Disease

Life is very funny sometimes isn’t it? I found out that I had a tumor in the back of my eye by getting hit on… Continue reading Not Defined by My Disease

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Polymyositis

I was diagnosed in 1986 by Dr. John Quinlan with Polymyositis.  I went to nine doctors before I was finally given the right diagnosis.  I… Continue reading Polymyositis

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What took over my life

I’ve been struggling with Complex Regional Pain  syndrome for the last 2 1/2 years .It took over my life and made me just a walking… Continue reading What took over my life

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Long QT Syndrome Type 5

At the age of 45 I had multiple cardiac arrests I was fortunate to survive. I was diagnosed with long qt Type 5. Shortly after… Continue reading Long QT Syndrome Type 5

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5 things I’ve learned about living with a rare disease

It has been over 2 years now since my 4 year old son was diagnosed with a rare disease. The first year was spent getting… Continue reading 5 things I’ve learned about living with a rare disease

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Tarlov

I was diagnosed with Tarlov cyst in 2010. I had my first spine surgery to fenestrate 2 of those cysts in 2011.  I had some… Continue reading Tarlov

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