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NeuromyelitisOptica & my other Rare Diseases

Hi, T hope you can understand what my journey has been over the past 7 years of being disabled from my Diseases. I am now… Continue reading NeuromyelitisOptica & my other Rare Diseases

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vedere con le mani e’possibile

Io e mio marito volevamo un secondo figlio. Fu il nostro primogenito a dare la bella notizia a tutti i parenti il giorno di Natale.… Continue reading vedere con le mani e’possibile

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Langerhans Cell Histiocytosis … “At least it’s not cancer!???”

It is the final day of #HistiocytosisAwarenessMonth, and this is MY #HistioWarrior, Sean. Our journey has been long, so please bear with me. Our journey… Continue reading Langerhans Cell Histiocytosis … “At least it’s not cancer!???”

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I woke up with pins and needles and ended up paralysed

On New Years Day 2016 I woke up with pins and needles which wouldn’t go away. I tried to ignore them but they appeared to… Continue reading I woke up with pins and needles and ended up paralysed

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What it’s like having Interstitial Cystitis/painful bladder syndrome

What it’s like having Interstitial Cystitis. I have been peeing about every 5 to 15 mins, only drops come out. In between I’m getting nerve… Continue reading What it’s like having Interstitial Cystitis/painful bladder syndrome

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Having a Child with a Rare Disorder

My daughter, Campbell, was just diagnosed with a rare genetic syndrome called Bohring-Opitz Syndrome (BOS). This actually came as a relief of sorts because she… Continue reading Having a Child with a Rare Disorder

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Running out of steam – Stiff Person Syndrome

Up to the age of 19 I was like a steam train that couldn’t be stopped. In February of 1999 I was diagnosed with Mono… Continue reading Running out of steam – Stiff Person Syndrome

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I Am A Medical Enigma

I never knew life without pain. It was my normal and it was the normal of all my adult family members. Growing up, I accepted… Continue reading I Am A Medical Enigma

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I always knew I was different

I was an active child, but as soon as I hit puberty I knew something was wrong. I starting becoming short of breath and had… Continue reading I always knew I was different

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