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Zebra stripes all the way

I am a 26 year old female born with albinism. Later in life I’ve been diagnosed with MAST cell activation disorder and as of right… Continue reading Zebra stripes all the way

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Living life with Pompe Disease

Diagnosed at 34 years old with Pompe disease, a rare progressive metabolic disease. Due to a weak diaphragm I use a ventilator at night. I… Continue reading Living life with Pompe Disease

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Desmoid Tumour/Melorheostosis

I was diagnosed with two rare diseases in 2010, the first called is a Melorheostosis is a rare and progressive disorder characterized by hyperostosis (thickening)… Continue reading Desmoid Tumour/Melorheostosis

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One Families Journey with a Rare Disease

29 February: A rare day for #RareDiseaseDay. Join us in making the voice of rare diseases heard today! http://www.rarediseaseday.org/ I’m 56 years old. My story… Continue reading One Families Journey with a Rare Disease

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De Novo Lynchie

De novo is a Latin phrase, literally translating to “from the new,” and in my case it lets my parents off the hook, thankfully it… Continue reading De Novo Lynchie

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Prove Them Wrong

I am one of those people who has to say hasn’t had the most straight forward life but because I don’t know any different to… Continue reading Prove Them Wrong

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Rare Disease Tri-fecta

I am 44 year old female. In the last two years, I have been diagnosed as having not one, not two, but three rare diseases.… Continue reading Rare Disease Tri-fecta

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once in a blue moon

once in a blue moon 1983 December – 1985 February Created by noreen on 18/02/2012 Once in a blue moon a very special person is… Continue reading once in a blue moon

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Living with two rare diseases

Penelope was born in June 2014 and after a very rocky start (needing ECMO treatment to save her life) we soon learnt that she had… Continue reading Living with two rare diseases

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