Hereditary multiple extostosis. My rare disease.

I would like to thank everyone for making this day available to those of us who suffer from a rare disease. When I was five… Continue reading Hereditary multiple extostosis. My rare disease.

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Ocular Melanoma

In 2005 I was treated for ocular melanoma. This is one of those diseases people never hear about unless they have a loved one or… Continue reading Ocular Melanoma

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My Acoustic Neuroma Story Battling a Rare Brain Tumor

My name is Shelly Knowlton and I have a rare disease. I had a rare brain tumor an Acoustic Neuroma that affects 1 in 100,000… Continue reading My Acoustic Neuroma Story Battling a Rare Brain Tumor

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Contains Milk

“Contains milk.” Who would think that twelve characters, only two simple words, could mean so much? Yet, they do. It is estimated that each day… Continue reading Contains Milk

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Battling the unkown

Have had low red cell count for many years. When younger I had many tests and nothing was decided what the diagnosis was for sure.… Continue reading Battling the unkown

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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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