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Pxe

I was diagnosed at 12 from lesions on my neck.  Also have angioid streams I  my eyes and heart murmur which I keep a check… Continue reading Pxe

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Our growing Champ community

Calum was diagnosed in September 2014 with a mutation of the CHAMP1 gene. We always knew he was a Champ! We are part of an… Continue reading Our growing Champ community

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Myotonic Dystrophy

In my mid-30s I was diagnosed with a rare disease — myotonic dystrophy type 1 — which my mother had been diagnosed with a few… Continue reading Myotonic Dystrophy

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THIEF GAUCHER

I am 26 years old. I am the face of Gauchers type 3b. I am a victim of its unmerciful uncaring and callous progression. Gauchers is… Continue reading THIEF GAUCHER

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What It Is Like Having a Rare Disease

Here is my account of living with a rare disease; Pure Autonomic Failure where my bladder and bowel failed to function normally. Now I have… Continue reading What It Is Like Having a Rare Disease

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My life with SCA1 – past and present

Hi all, I got recently diagnosed with SCA1 51 CAG bases via a gene test here in Finland. I am able to still do the… Continue reading My life with SCA1 – past and present

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Shining with HSP

I was the first in the family diagnosed correctly with HSP at age of 12 but showed signs at 5 my maternal grandmother was told… Continue reading Shining with HSP

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Policondritis Recidivante/Relapsing Polychondritis

La Policondritis Recidivante es una rara enfermedad autoinmune que afecta no solamente a las estructuras de los cartílagos, si no también a cualquier sistema del… Continue reading Policondritis Recidivante/Relapsing Polychondritis

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Policondritis Recidivante/Relapsing Polychondritis

La Policondritis Recidivante es una rara enfermedad autoinmune que afecta no solamente a las estructuras de los cartílagos, si no también a cualquier sistema del… Continue reading Policondritis Recidivante/Relapsing Polychondritis

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