Story about Behcet Syndrome .

Joanne Zeis

Apr 11, 2016


As a long-time member and supporter of the American Behcet's Disease Association, Joanne Zeis works closely with the organization in distributing books and resources for patients, their loved ones, and healthcare providers. She is also a member of the International Society for Behcet's Disease, NORD, the Alliance of Professional Health Advocates, the Vasculitis Foundation, and the American Medical Writers Association. She is a graduate of UCLA's Patient Advocacy program and holds a B.S. in Psychology from Tufts University.

Joanne's 17-year search for a Behcet's diagnosis was the subject of an episode of the Discovery Health Channel's "Mystery Diagnosis" TV series in 2005. The show can be seen on youtube:
Part 1: https://www.youtube.com/watch?v=22NHLG9jIOM
Part 2: https://www.youtube.com/watch?v=b62YET6QVUY 

In 2006, Joanne was the sole recipient of the http://business.highbeam.com/1208/article-1G1-154290329/ama-presents-distinguished-service-award, for her ongoing work on behalf of Behcet's patients. The Citation is the highest national award given each year by the AMA to a non-medically-trained individual.

Joanne works as a case manager at a major pharmaceutical company for patients with rare diseases. She is the author of "http://www.amazon.com/gp/product/0965840352/ref=as_li_tl?ie=UTF8&camp=1789&creative=390957&creativeASIN=0965840352&linkCode=as2&tag=essebehcs-20&linkId=PCH5I6FEKN6YALUN" and "http://www.amazon.com/gp/product/0965840301/ref=as_li_tl?ie=UTF8&camp=1789&creative=390957&creativeASIN=0965840301&linkCode=as2&tag=essebehcs-20&linkId=YUFEBPXFGJPJFBPI." Her http://www.amazon.com/Behcets-Disease-MyModernHealth-FAQs-Joanne/dp/1938549406 is the recipient of a 2015 National Health Information Merit Award for Patient Education.

Joanne administers the http://www.behcetsdisease.com/ website and the searchable http://www.essentialbehcets.com/ blog. She is also a frequent contributor to online BD patient support groups.  Joanne has been living with Behcet's disease since 1979 and advocating for patients' needs since 1998.

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