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elhers danlos syndrome

My daughter has eds (elhers danlos syndrome) was diagnosed about 1 year ago no family history she seems to have more and more things wrong… Continue reading elhers danlos syndrome

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Osteogenesis Imperfecta

I’m 15 years old & I fight a genetic bone disease called Osteogenesis Impefecta. It means my bones break easily, sometimes with no apparent cause.… Continue reading Osteogenesis Imperfecta

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Osteogenesis Imperfecta

I’m 15 years old & I fight a genetic bone disease called Osteogenesis Impefecta. It means my bones break easily, sometimes with no apparent cause.… Continue reading Osteogenesis Imperfecta

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HNPP, tintelende door ‘t leven !

HNPP of compressie neuritis veroorzaakt bij mij sta- en stapproblemen. Een genetische afwijking en ik ondervind sinds 2008 grote problemen. Na paar minuutjes staan of… Continue reading HNPP, tintelende door ‘t leven !

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My son

My husband and I were so over excited when our little boy was born, at one and a half he was diagnosed with Duchenne muscular… Continue reading My son

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I still live a good life

I was diagnosed with CVID (Common variable immune deficiency) in Aug 2014. At first it was daunting as I didn’t fully understand what it entails.… Continue reading I still live a good life

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The music never died

In 2006 I found the love of my life. He was a musician, conductor and composer and I sang as a soprano in one of… Continue reading The music never died

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A zebra amongst the horses

My daughter was born at home in 2012. Within six months we could tell something wasn’t quite right. Diagnosed with failure to thrive, she lost… Continue reading A zebra amongst the horses

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Being diagnosed with Addison’s Disease

Today is rare disease so I thought I’d share my story of being diagnosed and living with rare life threatening condition, Addison’s disease, to help… Continue reading Being diagnosed with Addison’s Disease

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