Behcet's Syndrome Society
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Ethnicity and Behcet's

Hi everyone,

I have researched and researched this disease. What I have found is that it mainly affects people of Mediterranean descent or Asian descent and I am neither that I know of. I am African-American, Native American and white and I was wondering if there are any more African Americans in this group with Behcet's syndrome?

Rooki

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ncbi.nlm.nih.gov/pubmed/119...

Hi Rooki, the link above will help you further to understand this disease, true, that my Son has it, Neuro Behcets, the most serious dangerous kind as mentioned in this article, he has brainstem/pons with pontine encephlitis, my unlucky son had childhood kawasaki disease (of asian children predominat) and now he has B.D. of Asian predominat...but the population pattern mentioned in this artilce is also interesting, I have written to this doctor, but have not had any response...I think if you wish you should write to her, she would be helpful....thank you for your post, and wish you well, and please be safe, from what I understand in this article, I think it is imperative that you get Neurology/MRI check up...it was too later for my son....best for you, Ashveer and his loving mother here...genetically, we are from North India, so no surprise here, I guess it depends how the population spread from silk road route to outskirts - we sent our son's blood work to National Institute of Health, as they found his vasculitis to be unique - I wrote to them online after reading many articles like you online, and to my surprise, they wanted to see my son's blood work, and I think you could try NIH.Com, or do a expensive Whole Exon Sequencing WES Genetic Test (must through your doctor), that will tell you about your genetics and disease activity, as for my son, they are still studying his disease, and I don't know what they will tell me as it is for research, hopefully they will tell me something in the next few months...

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Thanks for the link. Have a great day.

Rooki

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Not African-American but ancestors are mainly Norwegian. I did my ancestry DNA and found that my Viking relatives had a hay day down in the Mediterranean area. We are so intertwined in the world today that I think anyone can get anything. Not sure where you live but here in the U.S. the hardest part of this disease besides being diagnosed is finding a doctor who knows how to treat it. It took me 16 years to be diagnosed and it was by my lung specialist. As far as I know there is only three doctors that deal with this disease.

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Hi Brichel,

I'm in the US. There are way more than 3 who specialize in Behcet's. I had 2 excellent rheumatologists in Colorado, but recently moved to Phoenix, so i'm stuck trying to find a new rheumatologist. Thanks for you're response. Have a great day.

Rooki

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Love in Pa. One in NY and one in Arizona as far as I could find. If there is another one on the East coast I would love to know. I seem to be effected with both vascular and Neuro symptoms. My rheumatologist just said to me, "but you look good".

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Hi rooki,

I am African American but my mother is Syrian which is Mediterranean. So I do not know if that plays a big part in why I have the disease. No one else on either side of my family has it. But also a lot of my mothers family is still in Syria so an extended family member that I’ve never met could possibly have it. You could have some middle eastern ancestry from long ago but if not anyone from any race can still be affected

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Hi Lucets,

Thanks for your response. I believe Syria is one of the Mediterranean countries where this disease is common. Thanks for your response. Have a fantastic day.

Rooki

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Hi all. I am Mexican and have Neuro BD. I only know my about my blood line from my family. We come from the Mayan tribe. My great grandparents are still with us. They are my main sourse of information. My son is 15, Mexican & Salvadoran and has BD. I am about to start a chemo treatment and my son is beginning acupuncture treatments for Juvinal RA, mainly in his shoulders and hands. We are located in Northern California and there aren't any doctors who are familiar with this disease. I finally found a rheumatologist in Napa CA who is treating me. This is a rough disease and wish all of you well.

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Hi Guna, I have read reports online from Brazil, where they say that Brazil patines with Neuro Beh. Paranchyaml brainstem/CNS Lesions tend to relapse more...please be careful, and be on the proper medication, for sure, you must be on immunosuppre. or higher med....you take care of yourself...steroids alone do not work ....I have read every single report around the world and many times over, some of them, and people who just do steroids, always relapse, and then doctors wait to put people on Immuno's...but one thing, my son was firstl put on Immuni. azaithporine right away with maintenance dosage of predsone...now...good luck..

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Thanks for your response and I pray that you go into remission.

Rooki

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I am a african american female with no close lineage to the commonly affected races. I also have neuro-behcets.

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Hey SavageV,

Thanks for your response. I don't have NeuroB (thank goodness), from what I've read; it's the worst type. I pray that you go into remission.

Rooki

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Thanks it has been a rough road but im not giving up. 😊 hoping for remission for you as well.

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SavageV, do you have the most serious kind, Paranchymal N.B. My son has dysartheria now, and right arm shaking as lesions are in the brainstem/pons, but there is the venous type that is good recovery prognosis, it is my son's that is mengineoencaphilits type that has poor prognosis....Neuro is very much sub dividied...hope you are well

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Hi sorry for the late reply. I dont know what type i have. How did they diagnosis his? I have several lesions in my thalamus, deemed in operable. They are growing at a very slow rate. But i do have seizures now when the lesions got right above my brain stem. I have a vp shunt because of icp. I go to neuro today for referal to the neuro-surgeon. I would like to request what ever test it is to find out.

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thank you, I think you have paranchyaml NBD, with mixed pattern of Non-paranchymal? do update if you can about your appn't; I don't think my son's brainstem/pons lesions are opearted, they are checked every six months for improvement, but he has permanent speech impairment now, with blind spot in eye, left Branch Retinal Vein Occlusion, and right arm shaking/motor skills, he had brain damage due to pontine encephlaitis inflammatory changes that caused lesions....wishing you well,...

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How many of you have been tested for the HLA B51 gene antigen? What we all have to remember, is going back even 10 generations will not tell us where our gene base all came from :) We are all a mixed bag and most of actually started out in only one of 3 places. So the odds are higher than we understand. The HLA B51 predisposes to Behcet's, I believe the worst type is indicated is this gene is found. People without the disease carry it too and may never get the disease. People without the gene also get Behcet's. There is another gene, I understand, but I am less aware of the link, HLA 20. A friend on here has more understanding of the latest thinking on immune disease linked to that gene I suspect. It all fairly new.

Above all, where we live means nothing, we are all a mix of everything :)

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Hi there, I am from South Africa but extensive DNA test show roots on paternal DNA to go back to Tsar Nicolas the II (R1b-M343) Maternal India and Greece (mtDNA u2b1) I was told by the specialist that the "STRESS" factor including the person's personal health at the moment is suspected at triggering the flare of auto immune. This is all so heavily disputed. Be it as it may I pray you all find healing as this disease has a roller coaster with me sometimes. stay strong

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researchgate.net/publicatio...'s_Syndrome_and_Nervous_System_Involvement

Whole Exome Sequencing is genetics of the future, the entire genetics are researched...in this case, my own simple understanding, to diminish the B.D. as stated in the article, the bacterias, can be challenged by The Neem Tree, I posted here about this, and it is worthwhile research, of this tree from India - it is very useful bitter tree, leaves, so bitter that it kills bacteria...malaria proven cure by drinking Neem Tea, however, one should not drink too much Neem, as it has effect on Kidneys the research found of those in Ghana drinking this too long, but one must drink it also in moderation to purify the blood..there is much on Youtube about Neem and benefits, we drink this, now, given to my son, about 2-3 times a week, small tea amount, and now we pause for week or two, and then drink little more later...Neem can kill strep/microbacterium... we are from North India, but our roots are from Iran, as I did research, makes sense being of Sikh Population from India...

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Thank you Ashveer this has indeed been helpful! I really appreciate, I will try the Neem tea. I will ask my Aunt when she visits Gujerat next to bring from me as I can not find a supplier in South Africa that is reliable.

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Hello Zuzu, North part of India also for you, close to the Silk Route, for young males, the disease is very severe, and such is the case with our son, doctors did not do enough in time and it travelled to his brain/stem/pons lesions now, severe dysartheria improved somewhat, and blind eye...any way we have to move on, there is no choice, also do eat mostly non-dairy/alternative cheese, and less wheat as possible to control inflammation..... one can go to the experts, but I think it is important to understand your self/body, and then try to learn about the plant/herbs yourself as much as you, and then see someone...Neem is growni South Africa, surely...

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I have found it now on a holistic website but can only find Neem oils and Neem powder, they are sold out on neem tea. any suggestions on the oils & powder? I am truly sorry about the development of your Son's health. This is truly a test from the Almighty. Be strong. Sarbaht dah Phahla

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Thanks for commenting. I've been hoping through this my whole life, but te recently I've been having increased flares.

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I pray for your healing

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Hi I’m not African American but I am a black woman with behcets I live in England. My parents are from St Lucia and Jamaica x but going back in our family we are a definitely a mixed bag so 🤷🏽‍♀️

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Hi,

I am African American. I have a lot of autoimmune cracks in my family including lupus, fibromyalgia so there are underlying issues in my genetic set up. But I also had a huge load of strep at one point in a response to a bad reaction to antibiotics which is also a known trigger. There are infectious pathways to this crazy disease on top of genetics.

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Oh wow, thanks . I hadn't thought of that

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Hi,

I'm African-American with some Native American ancestry and I have BD. I do however have several family members with other autoimmune diseases.

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Thanks for replying. Perhaps the native american commonality is something i should look into more. Thanks again.

Rooki

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I am Dominican. Both parents but born in New York, New York.

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