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Treacher Collins Syndrome

I was born with a craniofacial anomaly called Treacher Collins Syndrome. My characteristics are small, undeveloped ears, small jaw and airway and down slighting eyes.… Continue reading Treacher Collins Syndrome

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Hopeful for a Cure – My Experience with hATTR

My mom, aunt and grandmother all died of Hereditary Amyloidosis. I was about 10-years old when I was first exposed to the devastating effects of… Continue reading Hopeful for a Cure – My Experience with hATTR

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Willmans she ome

Hello my name is Charlotte I got willmans syndrome 23 I got willmans

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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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