USA Behcets Specialist?

[ambersorganics]

Does any one know of the best place to attend in the USA for Behcets?

[OpsDave70]

Dr. Gladstone Sellers in Atlanta has an inordinately large number of Behçet’s patients - me being one of them. He is concierge, meaning that he is available 24/7 for a fee that is determined by age. I am 48 and my annual fee is $1700/year. His Behçet’s-specific care has been phenomenal. I also have Panhypopituitaryism because Behçet’s killed my pituitary/hypothalamus system. He has been great about treating that too. Dr. Sellers is a GP, but he is very, very familiar with Behçet’s and effective at treating flares and referring you to specialists who know the additional care requirements of Behçet’s patients.

You will also need to see a rheumatologist, and I see Dr. Gary Myerson in Atlanta. Part of the problem is getting insurance to cover off-label, aggressive treatments for Behçet’s. Dr. Myerson and his staff are willing to fight those battles and get things worked out so that insurance will pay for the treatment you need. It takes a long time, sometimes a few months, to get all of the insurance straightened out. In the interim, Dr. Myerson many times will start patients on samples until the insurance kicks in.

I hope this helps. It can be really challenging to find doctors who are willing to treat us because of the high degree of complication. All my best to you and yours. Dave

[jzeis]

There's also the Behcet's Syndrome Center in New York City. If you go, ask to see Dr. Yazici, if possible. I know some people have been able to see him, but I've also heard different rumors, like he's left the Center and moved back to Turkey, or he's only doing research now and not seeing any patients, or he's working somewhere in California -- it's best to ask the Center directly if he's available. When I asked someone from the ABDA a couple of months ago, I heard he's still at the NYC location and seeing patients, but he also travels out of town a lot.

Here's the website for the Center: nyulangone.org/locations/be...

Joanne Z.

[NerdyChristina in reply to jzeis]

I saw him a year and a half ago but just once for a special consult when all my treatments had failed. It took a lot of convincing just to get one appointment, and even then it was just the one consult to lay out a treatment plan for my rheumatology team.

That being said, the whole rheumatology team there is fantastic and experienced because of him! I’ve heard of folks having tremendous success in the UCLA system. I personally did poorly with UCSD but would definitely give UA a shot if I ever moved north.

Find a rheumatologist you trust first, where you live, and then go branch out from there

[Lovingdragonflies]

We have a vasculitis clinic at OHSU here in Oregon. Cailin Sibley is the director. I see her. She has a specific interest in Behcet’s. She used to study it at the NIH. I love her. She is not only extremely competent but is very caring and kind.

[Katniss12]

Dr. Nadera Sweiss Chicago, Rheumatologist. Probably about 3 months to get in.

[JeezLouiseNowWhat]

Dr. Holly Lowther (rheumy) AGH Center for Lupus Excellence- She has treated Behcet's, in fact identified that it must be a contender for what is going on with me, and has been an incredible health care partner! Her staff also battles the insurance wars very effectively. Probably a 3 month wait to see her. Don't go to a colleague, See HER.

[LLocke]

I see Dr. John Zone here in Utah. He is the head of the immuno department at the University of Utah. He has been the best doctor i have seen about this disease. He has keep most of my symptoms under controll. As USA is such a big place. It depends on where you live as to which place is best for you to go. Find somewhere local. Traveling thousands of miles would be daunting. I hope you find a place and doctor that is right for you.