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Humans of Rare Disease 

This is

Your Space

Welcome to Humans of Rare Disease

This collaborative effort features people in the rare disease space: patients, advocates, researchers and healthcare professionals alike. We have encouraged them to share their stories and offer readers a window into their lives. Enjoy and share!

Check out our Rare Disease Community Below!
 

Emily Parks

''I am a patient and healthcare advocate. As a patient, I live with Short Bowel Syndrome and was dependent on Parenteral Nutrition until I received an intestinal transplant in December of 2020. As a healthcare advocate, I have a strong focus on the intersection of psychology and managing chronic illness, specifically on medical PTSD in patients with chronic and/or rare illness and how it impacts treatment outcomes as well as what can be done.''

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Short Bowel Syndrome, Intestinal Transplant, Medical PTSD

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NEIL

''I did not start puberty at the normal time. As a teenager I was labelled as a "late bloomer" and told just to wait and see.

Even at the age of 19 and attending University I still had not started puberty but no doctor seemed to know what was wrong, I kept being told just wait and it would start eventually.

It was not until the age of 23 that I had a chance encounter with an endocrinologist who worked at the same hospital where I worked as a biomedical scientist.

After telling him about my la...

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Kallmann Syndrome

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DAN

''My name is Dan Dry Dock Shockley, retired U.S. Navy, Operation Desert Storm; Enduring and Iraqi Freedom veteran and 9 year hereditary colon cancer WARRIOR w/a permanent ileostomy.

In May 2012, while I resided in Hawai’i, my first and only colonoscopy at age 51 was performed.
The results revealed 100 polyps embedded throughout my colon, rectum and anus. Based on these findings I visited a Certified Genetic Counselor. Germline DNA sequencing testing was initiated. I had not experienced any symp...

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Attenuated Familial Adenomatous Polyposis

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