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Got the gist of things.

I had had back problems for several years and at the end of 2008 I had my Gallbladder emoted due to nausea I was having.… Continue reading Got the gist of things.

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I Have CRPS and I am Aware that I am RARE

I was a mother of two teen girls and I drove a mini van full of teenagers to the mall frequently. We went to Swim… Continue reading I Have CRPS and I am Aware that I am RARE

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Rollercoaster Ride

Growing up, I was constantly bullied due to my awkward appearance. At the time, we had no idea that my physical appearance was due to… Continue reading Rollercoaster Ride

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Silently Persevering

Everyone has their battles. Everyone gets tired, and everyone gets unhappy. But it’s difficult when you are dealing with health struggles that are out of… Continue reading Silently Persevering

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DOBLE LUCHA

hola soy Jorge y esta es mi historia. atando cabos, desde pequeño padecia algunos dolores en los miembros inferiores pero por ser el menor de… Continue reading DOBLE LUCHA

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The Disease with many Faces

In 2013 , I was 55 and  living life to the fullest . I had 2 Grandsons and my Daughter was expecting a little girl… Continue reading The Disease with many Faces

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FPIES and Spontaneous hypothermia

This is Georgia-may. She is from Dublin, Ireland. She is 3.5 years old. Georgia-may  is diagnosed with a rare allergy condition called FPIES, even rarer… Continue reading FPIES and Spontaneous hypothermia

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Freedom to us all.

Statistics show there are around 30 million Europeans living with a rare disease. Most of them caused by genetic deficiency, some also caused by environmental… Continue reading Freedom to us all.

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Our Champ 1 Gene Mutation Community

Our daughter was diagnosed with Champ 1 Mutation January 2015, after 12 years of searching for a diagnosis. Our community of Champs seems to be… Continue reading Our Champ 1 Gene Mutation Community

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