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Still Undiagnosed

Since 2013, I have had many problems and remain undiagnosed. My liver levels go up extremely high intermittently, I suffer from extreme fatigue, and today… Continue reading Still Undiagnosed

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Figured myself out

I was born and diagnosed with cerebral palsy. It wasn’t until last year that I demanded to be put on a dopa drug. It amazingly… Continue reading Figured myself out

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My Life With Ehlers Danlos Syndrome

Hello my name is Chloe and i am seventeen years old and i have Ehlers Danlos Syndrome (EDS) EDS is a rare genetic connective tissue… Continue reading My Life With Ehlers Danlos Syndrome

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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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