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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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My life, my days

My name is Helga, I’m 35 years and I have EDS (Ehlers-Danlos Syndrome) hipermobility type. I found it two years ago when my body started… Continue reading My life, my days

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Please Help Baby Chiko (Biliary Atresia Patient)

We are Gino Lino J. Gumban and Carol Jeanette V. Gumban, parents of 2-year old Haley Ariela and 1-year old Marcus Paul, fondly called ‘Baby… Continue reading Please Help Baby Chiko (Biliary Atresia Patient)

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Maisie Marsh – PYRUVATE KINASE DEFICIENCY

Hi. My name is Emma, my daughter Maisie has a very rare blood disorder called Pyruvate Kinase Deficienency. Maisie is the 40th person in the… Continue reading Maisie Marsh – PYRUVATE KINASE DEFICIENCY

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