HLA B51

[Honeyblossom]

hi there,

can anyone shed any light on being positive for hlab51???

mines just come back as positive after being seen at the CoE in london. my previous rheumy didnt do it. Reading about it has just confused me. Isnt the assoiciation with BD only in turkish and japanese people?

Im caucasian, what does being positive mean for me?? does it mean Im more likely to get more eye involvemnet??

im worried about this as I have a small baby

please help

[sian35]

Hi Honeyblossom

Sorry to hear you are feeling concerned. Personally i think the COEs are a bit swift to do these types of tests without any kind back up. Obviously as a patient it is good to contribute to a better understanding of the disease generally , and it might help drs to select approprate medecines for you, but then support should be offered to those recieving the results. I declined having this tests done when I first went to the CEO as I was in the middle of helping my son with a joint mortgage application and panicked a bit. Funnily enough I was just thinking this morning whether I should now get the test done but was worried about what it could mean for my son (he is 24).

I understand that this test is not a genetic test as such, and also a positive result does not mean that a person will go on to have Behcets, as they think it is probably a genetic thing plus an envionmental trigger that could start active disease.

I think that you do not have to be Japanese or middle eastern to have a poitive result, its just its more prevalent there to have a positive result for hlab51. As regards, the eye disease issue i don't know - maybe you could ring the centre and ask if someone could rinf you back talk to you about the result? Perhaps Sally or Jean could help set this up? Their contact details are on the London COE site, and I expect they gave you some paperwork with these on.

Let us know how you get on and enjoy your baby!

Regards,

Sian

[nurse_ratchet]

I'm in Canada, Caucasian female with no Middle East or Asian roots and am positive also. I don't believe that it signifies severity of disease but rather a diagnostic tool (instead of just going by symptoms alone) to use in one of many rare diseases. The needle points to the probable culprit-BD. With BD,it can manifest itself like a wild tornado to not even a breeze that you would not know you have anything at all! Best not to worry and just be pro active on staying healthy! Worry more about what you can control(diet exercise,etc) rather than what you can't(weather lotteries,etc). Enjoy your baby! They grow quickly...too fast does the time fly Be careful of things you read as they can sound pretty scary. Be in tune with your body(changes,symptoms) and seek medical attention if needed.

Good luck Positive thoughts!

Gen

[rahann in reply to nurse_ratchet]

I agree! I'm Canadian too. I am half middle eastern...but my mom who is American has it too I think and she is white. I just deal one issue or flare to the next...trying to live the fullest each day. I have 3 kids. Each day is a gift! each good day is awesome.

[nurse_ratchet]

Rahann,

That's awesome that is where I'm at too. Every good day is well spent and cherished!

Gen

[CrystalAngel1]

Hi, Please don't panic! The HLA B51 is just a gene that is associated with Behcet's. There are a lot of people in the Turkish population (and others) who carry the gene who do not have (or go on to get) Behcet's equally, there are lots of Caucasian people who have Behcet's and do not have the HLA B51 gene. It is a shame that this was not explained to you at your consultation and you should definitely discuss it with them when you go back. I can understand that you are worried as you have a baby about potentially having passed something on that is genetic but cases of there being more than one true case of Behcet's in a family are rare and again, the COE should and will be able to give you further information on this. Please don't worry about it being associated with an increased risk of eye involvement - I'm guessing from this post you don't have this already? The London COE are very good at what they do clinically - did you have your eyes assessed at your first visit? They will be able to give you further information on your own disease and the likelihood of developing eye disease. Whatever you do - stop panicking and enjoy your baby - pick up the phone or e-mail Sally Tillett the Clinical nurse Specialist at the London COE - I'm sure she won't you asking and it will be good for her to feed back to the clinicians the importance of explaining these test results when they give them out! X

[Hidden]

Interesting comments. I have HLA antibodies but I don't actually know what that means, or if it is relevant to BD and never thought to ask! It was discovered when I had a blood transfusion prior to BD diagnosis.