United States – Panhypopituitarism

Hello, I am a 28 years old but when I was born I was diagnosed with Chiari Malformation (a brain condition) and Club feet. I… Continue reading United States – Panhypopituitarism

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More Than Just “Shark Week”

When I was 16 I had awful, terrible pain in my belly every day. I saw specialist after specialist, one of them even telling me… Continue reading More Than Just “Shark Week”

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Cholesterol Ester Storage Disease (CESD)

I would like to share this on Rare Disease Day. I have CESD (Cholesterol Ester Storage Disease) which is a rare Liver Condition that causes… Continue reading Cholesterol Ester Storage Disease (CESD)

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My Journey

I like to consider myself a fairly tough person. Raised by a large family, growing up helping my grandparents on the farm I grew up… Continue reading My Journey

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Mycosis Fungoides

My husband Bryan has suffered from this disease since the age of 8 and he is now 46. It is part of the Non Hodgkins… Continue reading Mycosis Fungoides

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My Journey through TSC (Tuberous Sclerosis Complex)

Where do I start? My names Cortny and I was diagnosed with TSC before birth. Tuberous Sclerosis Complex is a rare multi-system genetic disease that causes… Continue reading My Journey through TSC (Tuberous Sclerosis Complex)

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I have earned my stripes

I am a 42 year old woman with Ehlers Danlos. I also have many of the conditions and problems that go along with EDS including… Continue reading I have earned my stripes

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In 2010, months before closing on our first home and our upcoming wedding, I was rushed to the hospital. That day was life changing. I… Continue reading Taka-What?!?!

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I’m 30 years old and I have hypopituitarism (under active pituitary gland). I have to take several replacement medications for it. I am also visually… Continue reading hypopituitarism

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