Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

606 results

JUST recently saw on CT a suggestion of this diagnosis as have had mesentery lymph nodes...

https://sharing.mayoclinic.org/comment/580859/
is called xpertdox I believe for rare diseases....to find per state..

Coping with a Rare Disorder: Cronkhite-Canada Syndrome

https://sharing.mayoclinic.org/2014/06/06/coping-with-a-rare-disorder-cronkhite-canada-syndrome/
Coping with a Rare Disorder: Cronkhite-Canada Syndrome ... with the extremely rare Cronkhite-Canada syndrome — so rare that there have been ... Join the conversation about rare diseases on Mayo Clinic Connect. Request ... rare disease ... rare disorder

Florida Chef Finds Expertise to Manage Rare Disease, Get His Life Back

https://sharing.mayoclinic.org/2016/05/16/florida-chef-finds-expertise-to-manage-rare-disease-get-his-life-back/
Chef Finds Expertise to Manage Rare Disease, Get His Life Back ... and ultimately a diagnosis of a rare disease known as amyloidosis for which he ... failure. While there's no cure for the disease, the symptoms often can be managed ... When Stefan discovered he had this rare condition, he looked to Mayo Clinic ... wasn't without its risks. Stefan's care was managed by Sikander Ailawadhi, M

Waldenström Macroglobulinemia: Integrated Treatment and Research at Mayo Clinic

https://sharing.mayoclinic.org/2010/03/24/waldenstrom-macroglobulinemia-integrated-treatment-and-research-at-mayo-clinic/
Macroglobulinemia (WM) in 2000. WM is a rare disorder involving enlargement of the ... developing for this relatively rare disease. Mr. Nolting shares his experience ... trials, new therapies and the integrated care available to WM patients at Mayo Clinic

Yes. I had an Acoustic Neuroma removed in 1993. My Love for music was and will...

https://sharing.mayoclinic.org/comment/581148/
Degeneration, Parkinson's Disease. Muscular Diseases. I have had extensive tests ... need to get well or try fighting Rare Diseases.

Hi - I woke up on Sunday morning with a Kidney Stone symptoms. I suffered through...

https://sharing.mayoclinic.org/comment/580886/
my doctors office that I have a rare disease called sclerosing mesenteritis.

A new lease on life thanks to research into rare neurodegenerative disease

https://sharing.mayoclinic.org/2021/12/26/a-new-lease-on-life-thanks-to-research-into-rare-neurodegenerative-disease/
thanks to research into rare neurodegenerative disease ... Warren. The disease is known as CSF1R-related leukoencephalopathy, a rare, rapidly ... rapidly progressing genetic disease with no cure that causes cognitive decline; personality ... Family Professor of Neurodegenerative Diseases, who has been leading research into ... decades. "I knew if I had this disease that Dr. Wszolek was the person I

This message is for anyone who has been diagnosed with mesenteric panniculitis, also known as sclerosing...

https://sharing.mayoclinic.org/comment/580857/
approximately 235 members with this rare disease. If you are interested in joining ... Facebook friends to see. This disease is rare and has some horrible symptoms

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