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Behçet's UK
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Just wondering if there's Anyone in U.S. that has BD?

Hi,

I was curious if anyone is in U.S. I would like to connect in regards to treatment.

I feel there is so little info Dr.s here have ..I wish they fully Understood this BD and the effects it has on me and others.

Thanks, Angela

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Hi Angela,

There are between 16-20,000 of us here in the US. There's even a Behcet's Syndrome Center in NYC. I live in Massachusetts and have had BD since 1979.

The American Behcet's Disease Association has info on BD at behcets.com. If you need help for uveitis or other BD-related eye problems, uveitis.org has a list of uveitis specialists by state. Posting your state in this group (or BD groups on FB) will usually help with doctor recommendations.

Best wishes!

Joanne Z.

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Hi I’m 22 years old and I was diagnosed in 2017. I have had a few symptoms since I was 16. I’m located in the US. I’m not sure exactly what questions you have but feel free to message me any time!

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I am also in the US. I am in Utah. It took 17 years for them to figure out that what I was dealing with was Behcets. Now, 12 years later, I have help from good doctors, but some of my doctors are not covered by my insurance. I have to pay for them out of pocket. There are no doctors in Utah that I have found, who are on my insurance, who know much about Behcets. I have tried several. If anyone knows of good ones in Utah, please post. The good rheumatologist that I see who I pay for out of pocket is Curry Koening. He is great, but the cost is quite prohibitive, especially when I am flaring. Where are you in the US?

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Im in the upper Peninsula of Michigan ...we seem to have limited healthcare here. I went downstate to U of M (9hrs.)

But the type of BD I have , I was so so sick, doing better since Humera , imuran & colchacine combo.

Its very difficult when Docs. Do not understand this debilitating disease:(

Im doing my best..just wish it would go away..lol

Now It came on gradually and has been getting worse and worse until they tried a humera shot . Every other week. It stopped all ulcers, blisters and cycle but i still have some major joint pain

I feel my joints lock up on me but now its a never know day to day. Overall Im sick but i was very very sick...so Im hopeful.

Any info or sugg. You have please share with me!!

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there was a young lady on here who thought she had behcets but it ended up being pemphigus vulgaris,. Either way, she figured out how to differentiate which may be helpful. Arcmacjac where did you go initially?

as for other things, call all the rheums. ask them for their experience with regards to behcets. always be your own advocate and read yourself. it does not hurt to print literature and bring it to your doctors appt! not everyone is an expert, so help you- help your doctor.

if you feel uncomfortable or that they are dismissive, find a new dr. plain and simple.

xoxo

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I am British, now in TX and I have a team of specialists that finally seem to understand. Are you near TX?

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If you don't mind me asking.. whereabouts in Texas are you? Considering a move there and wondered if they had good Behcet's treatment?

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Spring Texas zip is 77373 for me

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Hi Angela, I currently live in Los Angeles. I have had BD for about 20 years. Im sorry to say it has been a major struggle for me to get doctors to understand what it is or even to treat it. There's a vasculitis center in San Francisco that treats BD. I've never been..too much money. I hear there's one in new York too and John Hopkins hospital. I think of moving to one of these areas or nearby. I moved out of Utah since no doctors to treat there. Here I haven't had much luck either so considering Michigan or Texas. Message me anytime

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Hi Angela.

My name is Leena.

And i live in West Valley City Utah. In USA.

I also have Behcets.

My journey was a quick one for diagnosis and treatment. It Took about 1 yr of seeing my current Dr. This time frame does not include the previous doctors i saw who clearly knew nothing about the rarer autoimmuno diseases.

Those other stories are not pleasent and quite traumatizing. I wont go into them here.

But Dr Zone, he is a jem. Thats who i see here in Utah.

He immediately took me serious. He started trying medicines on me for what it could likely be. First ones did not work, as he ruled out possable other options as to what was going on.

He did tell me the first appointment, when i asked, that Behcets was a high likelyhood. But he wanted to rule all other options out before he finalized my diagnosis.

These appointments included blood tests and biopsies of skin sores. Reviewing my photos and short videos i brought. And examining any current sores i had. And listening to my list of complaints.

Really he is a patient man.

The best Doctor i ever had for any reason.

His name is Dr. John Zone. He is the Immunodermatology Professor at the University of Utah. He is not an associate professor or an underling. He is the Professor. He heads the research department that diagnoses and treats immuno diseases. And heads the teaching department also. His Specialties are. Bullous (Blistering) Disease, Dermatology, Immunopathology, Immune, Autoimmune, and Rheumatic Diseases.

Location are. Midvalley Health Center. 243 East 6100 South Murray, UT  84107. Phone 801-581-2955.

And University Hospital Dermatology Clinic 28. 50 N. Medical Dr. Salt Lake City, UT 84132. Phone 801-581-2955.

His many years of experience is probably why he was able to quickly get me diagnosed and on meds that worked for me.

I know he has a couple of Behcets patients.

Lots of other immune disease patients also. The typical ones everyone else seems to get. And other rare disease ones.

His bed side maner is superb .

I had to pay out of pocket also untill my disability came through.

The University of Utah worked with me. I filled out financial papers with them and they reduced my charge to see him. I also discussed it with Dr. Zone and he agreed to keep my payment reduced.

That is the only way i could have continued to see him to get the help i desperately needed.

I suggest you look into wherever you go, to file financial papers with them, and see if you can get a reduction of your doctor visit payments.

I also asked them where i could go and get my blood drawn for the many blood tests that were needed. As Dr. Zone's team normally drew the blood in the office and then sent them out, the cost was more expensive that way.

They were very helpful in finding alternative places for me, that i then drove to and had the tests done there instead.

Even gave me maps to find my way to these other place.

And called them ahead so those places knew i was coming in. And they got me in immediately for the tests. No wait. A few times i could see a few people waiting for whatever tests they were there for when i arrived for mine.

I believe drug tests for potential jobs.

Now thats service.

Or it could just be the clout that Dr. Zone has in the medical community. I never asked. I Just was gratefull it was very quick.

All these things helped me keep the costs down.

Many hopes you find the doctor who is right for you.

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I’m in Oregon. I had a great BD specialist who has since gone into research. But my rheumatologist is good still. Main thing is I have a great neurologist that has understanding of BD. He’s humble and willing to do what it takes to learn about disease. He’s amazing. He collaborates well with my rheumatologist and ophthalmologist. It’s a process that doesn’t happen over night. It also takes some give and take. It’s kind of like a friendship and involves trust. So far, I’ve cleaned out the doctors I couldn’t work with and made way for ones that I can. I trust my gut. If I don’t feel like they listen to me, I give it another go and then find someone who does. Having the right insurance does help. Ours was through the marketplace. Oregon tends to have good healthcare. Hope you get the help you need!

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hi I live in the UK . feel free to message me anytime . take care

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Yes. I’m in Pennsylvania. You can message me if you want

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Hi Ang4upmich-

I'm from MN and I'm a part of this group because my daughter suffers from what we think is BD. So far we've seen a Dermatologist, Rheumatologist, Gastroenterologist at the University of Minnesota and she has a every-6-month running visit with her Opthamologist to keep Uevitis/Iritis in check. They've ruled out many things, but I think the few remaining questions for her symptoms have been ... is it BD (we are of scandinavian heritage - so they say it's rare) or her Gastroenterologist thinks its possibly a Gastro disease that 'presents itself' with the same types of symptoms. She's had one Calprotectin test and her numbers were so high at 75 (normal range is 0-49) that they want her to take it again this month.

You are close to Minnesota - you could try some of the docs here? I think Mayo Clinic in Rochester also has specialists that have worked with Behcet's patients - there was an article about 2 sisters that were being seen by doctors at the Mayo clinic...

I'd love to stay in touch - Hope some of my ramblings and info has been helpful

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Live in WI and I’ve had BD for the last 10 years. I’ve been to mayo clinic as well as NYU for treatment. Lmk if u have any

Specific Qs! Good luck!

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I am located in Texas so not sure how much help I'll be. Seeing as you know from state-to-state here treatment options doctors and quality of care changes drastically. But feel free to get in touch with me

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