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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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CADASIL

In my early 40’s I started having quite a lot of odd symptoms like vertigo, headaches, falling and generally not feeling well. I went to… Continue reading CADASIL

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MPS II – Hunter Syndrome

My son was diagnosed with Mucopolysaccharidosis II (Hunter Syndrome) at the age of 6 – a progressive, incurable, life-limiting condition. Thank you for all the… Continue reading MPS II – Hunter Syndrome

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Fighting with c3 glomerulonephritis

Hi everyone! My name is Esther and i am diagonsed with C3 glomerulonephritis after i gave birth in 2013 to my first son. My blood… Continue reading Fighting with c3 glomerulonephritis

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Noel’s Prader-Willi Diagnosis.

When I found out I was expecting my 2nd baby in March 2013 after some trouble conceiving, I was excited. First 16 weeks I had… Continue reading Noel’s Prader-Willi Diagnosis.

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MegaStar

Our lives were permanently changed the day that Megan Summer McSween was born. Pregnancy with Megan wasn’t easy and we knew that life after her… Continue reading MegaStar

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Erythropoietic Protoporphyria

Living with this rare disease makes life outdoors very painful. It is like being allergic to the sunlight, which causes wounds and severe pain upon… Continue reading Erythropoietic Protoporphyria

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