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You’re not alone…. Interstitial Cystitis

Hello, My name is Mari Garcia-Ramirez and I have interstitial cystitis/ painful bladder syndrome. Due to the fact that this condition is labeled as an… Continue reading You’re not alone…. Interstitial Cystitis

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Team#EastonIsMyHero-FightagainstMPSll

Easton was born at thirty-six weeks gestation on January 6, 2017. He was almost immediately taken to the NICU for something called PPHN (Persistent Pulmomary… Continue reading Team#EastonIsMyHero-FightagainstMPSll

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GBS Suvivior

My name is Raymond Lopez.  My journey with Guillian-Barre Syndrome (GBS) began at age 35 in 1988. As I reflect back on my 10 months of… Continue reading GBS Suvivior

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Logan’s journey with Alstrom Syndrome

Our journey with Alstrom Syndrome … Logan and Mum Debbie New Zealand The medical story … born healthy … 9/10  on the APGAR scale… high… Continue reading Logan’s journey with Alstrom Syndrome

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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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