BEHCET AND HERITAGE

Hello, first of all sorry for my english , I m from Buenos Aires, Argetina. My husband has neuro behcet, he was diagnost 15 years ago, at the age of 21 years.- He has uveitis , aftas and inflamtion in cns, parenquimal, he is on infliximab and metotrexato , he has 3 attacks in the snc during this years. He is ok now! He want to have a baby!!! And now appears ours questions and questions.... Anybody can help us? telling your history .,,, I know that behcet is not hereditable 100% and isn ¨t mendeliana heritage. Thank all very much!!!

9 Replies

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  • Good to hear from you Solbelita although I am sorry to hear your husband has been so unwell.

    I have a 23 year old son and had undiagnosed behcets when I had him. We have managed to bring him up - although it was hard for him when I was unwell. Fortunetly my husband works from home and was able to help with the childcare. Do you have much family support around you which would help if your husband was ill?

    From a genetics point of view i think it would be best to ask qualified people.

  • Hello sian34 , thank you for your response. Yes he have many people around us , and can help us, for me is not a problem. The only thing we have fear is that the baby would have behcet too. So i would like to read experiences for other persons. If i understand well you have behcet and your son isn t have it, sorry but my english is poor....The specialist say to me that the baby would have more predisposition to have behcet , only that . Thank you again.

  • Hi I have a one year old who is perfectly healthy although my health has been very bad since her birth. It is hard but if you have good support and it's what you both want then why not this disease should not define us. My husband does lots for our baby though as sometimes I am just not well enough to do it. So I hope it is different for you but you should be prepared to do the majority of the caring for the baby as if your husband is in a flair he will probably be unable to. Good luck x

  • Hello Solbelita!

    In my family, I suspect, most of us have Behçet's. But we all have learn to deal and live with it. All of us have a "normal" life even if time to time we have "crisis". And that never stoped us to be happy people.

    I hope I help...

  • Hello,

    My sister and I both have Behcet's but none of our 4 children do. As far as I know there is no proven hereditary link, but like the others on this forum, I do not have medical knowledge and am talking only from experience and personal opinion.

    I recommend that you seek expert advice before getting pregnant - I assume your husband is on medication and it would be a good idea to discuss this as well as your question about the possiblilty of passing the disease onto your baby.

    If you are a member of The Society (which I highly recommend) you can ask questions of their medical panel, which may guide you initially, but I think discussing this face to face with an appropriate medic would be a sensible thing to do. Perhaps you could ask for a consultation with obstetrician who could liase with your husband's current Specialist and GP?

    You already know that they probably can't advise whether your baby will have BD, but if they know in advance of your plan to get pregnant, they can perhpas give you any advice they think may help.

    If you type 'hereditary' into the search box on the top right of this page, you will see lots of other discussions on this subject. They are mainly focussed on the mother having BD, but you may find them useful.

    Finally, in case you don't know, you can choose to make your posts private, that is, viewable only to members of this group before you submit them - you may not wish them to be viewable by anyone.

  • Hi and welcome to the group,

    We have the same concern about passing behcets on. I had my daughter before I was diagnosed and so far she has no symptoms. We are undergoing DNA testing to see if she has inherited any of the genes associated with the disease. If this has happened, we will consider IVF to screen embyos which may be an option for you.

    Best of luck,

    Beau.

  • There is medical evidence that in some cases, Behcet's (the complete disease or just some of its symptoms) can run in families. You can Google Behcet's plus these terms: familial OR genetic OR genome to find recent articles detailing what is known.

    In 2012, the different symptom clusters of Behcet's Disease were compared to see if any were more likely to be inherited than others. My particular cluster, which includes all the basic symptoms PLUS frequent arthritis, skin lesions, and acne, was found to be more likely to run in families.

    Last year, a genome-wide study was conducted that showed a number of possible genetic links, but as you discovered, Behcet's isn't a simple matter of inheriting it. Genes only play a role. So your concern about your husband somehow passing the disease on to his child is valid, but this would be unlikely. However, sometimes blood relatives of Behcet's patients report an unusual number of oral ulcers and other minor symptoms.

    I was diagnosed soon after my only child was born. When she turned 23, she had some suspicious symptoms (arthralgia, 2 oral ulcers, widespread skin purpura and rashes with fatigue) that lasted about four months and have not come back since, three years later. My sister and her son have also complained of frequent oral ulcers and my sister gets suspicious skin symptoms, but nothing else. I suspect that they carry whatever genetic marker I have, but that nothing has triggered the disease in them.

    If I knew that I had Behcet's before I got pregnant, that would not have stopped me from the joy that children can bring. But it's sensible to do what you can to stay healthy - not smoke, stay a healthy weight, sleep and exercise enough, and enjoy life. I wish your husband the best in his Behcet's treatment and that you both bring a lovely, healthy baby into this world.

  • Hi Solbelita

    Nice to hear from you. I agree with everything that others have said in answer to the above question regarding planned pregnancy. One thing came into my mind - be careful of whatever medication your husband may be taking (check with the specialist first). I was on Thalidomide for 9 months and both the female and male partner had to sign a contract regarding not getting pregnant. In the past Thalidomide caused birth defects and we all think of it just being passed through the female but didn't think of anything dangerous being passed through the male. Hope that makes sense - I am talking about medication not NeuroBehcets. If you want to private message me in Spanish I can probably answer you - it is a long time since I have practiced Spanish but used to be reasonably fluent.

    Cheers Lesley

  • Hello , thank all of you for give me information , and your time, we will go to the reumatologhist next week , we will talk about the baby . all of you , help me !!!

    Thank you.

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