Behcet's resources from Joanne Zeis: I've had... - Behçet's UK

Behçet's UK

4,802 members4,078 posts

Behcet's resources from Joanne Zeis

jzeis
jzeis

I've had Behcet's for almost 40 years and have been helping other BDers since 1996 through online support groups, websites, books, and other resources. Here are some reliable sources of info for people in the US, UK and other countries:

•Behcet's Syndrome Society (UK): behcets.org.uk

•American Behcet's Disease Association: behcets.com

•Three Behcet’s books by Joanne Zeis: amzn.to/2NW6gqf

•Behcet's Syndrome Society Fact Sheets for patients: behcets.org.uk/information-...

•Behcet's Syndrome Centres of Excellence (U.K.):

London - behcets.org.uk/london-centr...

Liverpool - behcets.org.uk/liverpool-ce...

Birmingham - behcets.org.uk/birmingham-c...

•The Behcet's Treatment Center in the US (New York City) has become part of the Seligman Center for Advanced Therapeutics at: 333 East 38th Street, NYC

nyulangone.org/locations/be...

•Find a vasculitis specialist (worldwide): vasculitisfoundation.org/ma...

•Find a rheumatologist (worldwide): rheumatology.org/Directorie...

•Find a uveitis specialist (worldwide): uveitis.org/patients/list-o...

•Uveitis.org patient education booklets/articles: uveitis.org/patients/educat...

•Essential Behcet's -- a searchable blog (J Zeis): essentialbehcets.com

•Twitter feed: @jzeis

3 Replies
oldestnewest

Hi Joanne, I just want to say what a tremendous help you were to me when I was first diagnosed back in 2007. I've had my ups and downs since then but so far have lived to tell the tale. I also have Parkinson's disease. It struck around the same time as BD - both took years to diagnose as doctors couldn't recognise the combined symptoms as one disease -doh! It didn't occur to them there might be two diseases.

My rheumatologist is convinced that they're linked as Parkinson's is beginning to be viewed as having an inflammatory cause.

Anyhow, although I've remained fairly quiet (the Parkinson's is taking a greater and increasing toll at present) I would like to thank you for your invaluable support back then. I still have your book. A heartfelt thanks from me Joanne!

jzeis
jzeis in reply to Lisl

Hi Lisl,

Thanks so much! -- I'm glad I was able to make a difference for you :-)

BTW, Parkinson's-type symptoms have shown up in some other BDers too. It's pretty rare but it happens. Your rheumatologist has probably already read these articles, but I figured I'd give you the references just in case:

Parkinsonian syndrome as a neurological manifestation of Behçet's disease (1998)

ncbi.nlm.nih.gov/pubmed/953...

Neuro-Behçet's disease in Caucasians: a study of 22 patients (2007)

ncbi.nlm.nih.gov/pubmed/172...

All the best,

Joanne Z.

Lisl
Lisl in reply to jzeis

Thanks Joanne,

A dopamine tracer uptake scan, plus long-term clinical assessment and assessment of drug responses by my neurologist confirmed it's actual Parkinson's disease. After my BD diagnosis neuro-Behçet's was suggested.

It seems that the initial infectious disease triggered an inflammatory response that triggered both diseases. What a complex web they weave!

Many thanks again,

You may also like...