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Rare after rare.

Ever since I was little I always thought I was slightly different but still normal in my parents eyes. From the age of 13 or… Continue reading Rare after rare.

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Learning

As of last year I was diagnosed with several things. I was diagnosed with alpha-1, idiopathic hypersomnia as well as eosinophilic pneumonia. On top of… Continue reading Learning

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Scared and Depressed

I was always told I had Asthma so I continue to take my inhalers and at times they did not work. In July of 2016… Continue reading Scared and Depressed

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After a long hard road – I still have hope (hATTR amyloidosis)

My symptoms from ATTR-FAP started when I was around 60. I was having trouble with diarrhea, nausea, and vomiting. Over the next 30 months I… Continue reading After a long hard road – I still have hope (hATTR amyloidosis)

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Brave 7 yr old- roberts syndrome

Hi my name is jennifer and this story is about me and my daughter’s fight to keep her alive. I found out when i was… Continue reading Brave 7 yr old- roberts syndrome

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A journey with cerebral plasy

I have a medical birth defect called mild hemiplegic cerebral palsy. I was born prematurely, which caused my birth defect.Cerebral Palsy is an abnormality of… Continue reading A journey with cerebral plasy

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Being a carer and at risk of a rare disease.

I have been a carer for my father for around ten years ! He suffers from Huntington’s DISEASE which is a rare genetic disorder. Yes… Continue reading Being a carer and at risk of a rare disease.

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Lupus

I was diagnosed 9yrs ago with lupus profundos a rare skin disease.. I have been trying to get a diagnosis of systemic lupus but because… Continue reading Lupus

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Logan’s Life

My son Logan has a Rare Chromosome Disorder an Unbalanced Translocation of chromosomes 1 and 8. He has several medical problems and a great deal… Continue reading Logan’s Life

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