Polymisitis and me.

The Polymisitis is something that reduces you to something you cant believe that is possible. Not only the Physical way but the mental way, the… Continue reading Polymisitis and me.

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Evie’s Journey

Evie-Mae is a sweet, loving two year old girl who loves milky buttons and mr tumble In November last year we were given the devastating… Continue reading Evie’s Journey

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FOP – Our Baby Girl is the Youngest in the World

My daughter, Isla is now 1 and was correctly diagnosed with Fibrodysplasia Ossificans Progressiva (FOP) at 3 months old after I looked on the internet.… Continue reading FOP – Our Baby Girl is the Youngest in the World

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Burning for a Cure

Hi! my name is Grace Seibel, and I am 16 years old. I was diagnosed with Complex Regional Pain Syndrome (CRPS)/Reflex Sympathetic Dystrophy on February… Continue reading Burning for a Cure

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Idiopathic Intracranial Hypertension

Three years ago I began to experience severe daily headaches, nausea and vertigo. I didn’t think much of it (thought it was migraines), until I… Continue reading Idiopathic Intracranial Hypertension

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Such A Long Journey For Such A Short Time

My name is Lilly and my son was Hunter. I will be telling this story because Hunter passed away on Sept 1,2012 from Bone Marrow complications.… Continue reading Such A Long Journey For Such A Short Time

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Medullary sponge kidney desease

I’ve been sick since my first son was born. I suffered from kidney and bladder infections that lasted for weeks. I’d go to the doctor’s… Continue reading Medullary sponge kidney desease

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Avm the story of my survival

i am a 40 year old woman married with 2 beautiful young sons. I was diagnosed when I was 35, I have always since childhood… Continue reading Avm the story of my survival

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Becoming blind and getting back some vision

My name is Dorothea and I live in Germany. I’m 45 years old and since the third year of my life I have been visually… Continue reading Becoming blind and getting back some vision

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