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Never Why Me? Only What Now?

I’ve not had a “typical” pregnancy. Twins the first round, collapsed lung the second. I’ve never been one to try and fit my life experiences… Continue reading Never Why Me? Only What Now?

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It’s hard for me to explain…

It’s hard for me to explain, difficult for me to describe. It’s impossible for me to tell a story from Paul’s point of view, he’s… Continue reading It’s hard for me to explain…

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It’s hard for me to explain…

It’s hard for me to explain, difficult for me to describe. It’s impossible for me to tell a story from Paul’s point of view, he’s… Continue reading It’s hard for me to explain…

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Living With Gitelman Syndrome

I live with a condition called Gitelman Syndrome. It is a life-threatening genetic disorder which affects your kidneys. A key component of the kidney doesn’t… Continue reading Living With Gitelman Syndrome

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Charlotte Hayden

Charlotte was born by c-section on July 25, 2010. Due to my gestational diabetes she weighed 9 lbs, had immature lungs and an enlarged heart.… Continue reading Charlotte Hayden

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The most hopeful time for rare diseases

As far as rare disease patients go I am fairly lucky. My main condition a primary immune deficiency called hypogammaglobulinemia, has a treatment called immune… Continue reading The most hopeful time for rare diseases

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My Tiny Super Hero Story – Allan-Herndon-Dudley Syndrome

My name is Andreas-Rares and I’m 2 years old. About a year ago I was diagnosed with a syndrome called Allan-Herndon-Dudley and that chanced my… Continue reading My Tiny Super Hero Story – Allan-Herndon-Dudley Syndrome

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My Zebra fight with Ehlers Danlos Syndrome

My name is Sarah Daniels. In order for me to tell my story I cannot give the short version. However, I will try my best… Continue reading My Zebra fight with Ehlers Danlos Syndrome

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Our daughter Tatjana lost the battle for life, but she will defeat Lafora disease

Dear friends, I am Snjezana Gajic, pediatrician, from Banja Luka (Republic of Srpska, BiH), but above all, mother of girls suffering from Lafora disease. Imagine… Continue reading Our daughter Tatjana lost the battle for life, but she will defeat Lafora disease

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