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Living with SPS

In May/14 I started falling but did not put my hands out to stop myself, so fell flat on my face. I was seeing a… Continue reading Living with SPS

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Jim Yadlon’s Guillain Barre Syndrome

My name is Jim and my wife is Rachel and we were Newlyweds in November of 1973 when I was hit hard with an autoimmune attack… Continue reading Jim Yadlon’s Guillain Barre Syndrome

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Aramis, atrésie de l’oesophage de Type 1

Je m’appelle Aramis, je vais bientôt avoir 2 ans et je suis né avec une atrésie de l’oesophage de type 1. C’est l’oesophage qui est… Continue reading Aramis, atrésie de l’oesophage de Type 1

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Maladie d’Ollier

Bonjour, je m’appelle Tempérance, j’ai 6 ans et je vis à Reims (France). Quand j’avais 16 mois, on a remarqué que j’avais une jambe plus… Continue reading Maladie d’Ollier

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Living with the challenges of lymphangiomatosis

Alfie’s Story Alfie was born on 10th June 2007, and for the first eight months of his life, he was healthy and happy like any… Continue reading Living with the challenges of lymphangiomatosis

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Living with the challenges of lymphangiomatosis

Alfie’s Story Alfie was born on 10th June 2007, and for the first eight months of his life, he was healthy and happy like any… Continue reading Living with the challenges of lymphangiomatosis

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Threw The Eyes Of Glass

Hello. My name is Wendy, and this is my story. I was born with OI (Osteogenesis Imperfecta) type includes All. I am 37, and have… Continue reading Threw The Eyes Of Glass

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Adam & Lea vs Sanfilippo

 Adam and Lea – amazing siblings who share not only big brotherly Love but also fatal genetic disease. They both suffer from genetic metablic disorder, MPS… Continue reading Adam & Lea vs Sanfilippo

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EL LARGO CAMINO DE JOSEFA

A los 4 años, Josefa debió luchar contra un agresivo brote de SHUa que amenazó su vida… Tras superar este dramático episodio, creció sana y… Continue reading EL LARGO CAMINO DE JOSEFA

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