Behcet's Syndrome Society
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Behcet`s and pregnancy

Hi, my daughter would love to try for another baby but she is very worried about complications during and after, can anyone please tell me their experiences during and after their pregnancies please, im aware everyone is different but i need to know the % of ladies that had problems to those who didnt. Thank you. x

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Hi

Often symptoms improve during pregnany as the immune system is dampened down. I had a rough patch (although undiagnosed at the time) in months afterwards but was able to keep going.

Experienced drs can help with risks e.g. blood clotting risks - my sister, a dr ,came across a behcet pregnant mother recently who was recieving excellent care and was well managed. Does your daughter have a good/knowleadgeable care team?

Best to consult with drs and asks lots of questions would be my advise.

Good luck to your daughter.

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Hi Sian, yes she is under the C.O.E in St Barts hospital London Prof Fortune, she was given a lot of information from there support worker while there yesterday which had info in it that she wasnt aware off and its frightened her, i havent told her all of the symptoms some get but she has now read it for herself and is totally shocked. Prof said she will be very well looked after when the time comes, but what i think is worrying her more than anything is the fact that she had a cardiac arrest due to complications with the illness while they were trying to determine what was wrong with her when she was 17, and i think this is prob why she is worrying like she is. x x

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Hi

Prof Fortune is quite a force to be reckoned with!!! - she is also looking after me at the moment. I am going to London 3rd week in a row on Monday, so can vouch for getting care whne needed!!

I think giving out that big folder of info can be a bit scary - not everyone gets everything- in fact i think it would be very unusual to do so. I think Prof Fortune is skilled in identifying people at risk of different things.

Of course it must be very scary to have had a cardiac arrest at any age - let alone 17. Was she OK in last pregnany? Maybe the British heart Foundation can provide contacts or info of other young people and how they have dealt with such a thing.

Best wishes

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Hi Tamirra,

It was lovely to see you and your daughter at the clinic on Friday. We spent quite a lot of time together that day and if I had known I would have talked with her about the information leaflets before passing them onto her. I do realise that the information in the packets can be overwhelming for some. There is a lot in them, but as you say and as we can see from all these replies, everyone experiences Behcet's symptoms in different ways. This is a great supportive group of people you've turned to and they are right, your daughter is in good hands with Prof. Fortune.

Please do let me know if there is anything else I can do to help or if you need any further information from the London Centre of Excellence.

All the best!

Jean, London Support Worker.

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Hi Jean, yes it was nice meeting you and thank you for the letter you have provided for the claim, we hope this will help her in her application. As for the folder of information, yes it did worry her, but as i and many others have said its not always the case that one person will get all of the symptoms. Im sure she has your contact details and is aware that she can contact you if she is worried about anything more. Thanks again.

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Great, please do keep me posted!

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Hi my little one is 14 months old now and although at the start if the pregnancy I was quite well I quickly began to flare soon after which was hard. So I had to have regular scans and lots of checks which if I'm honest scared me more in the end I began to ignore a lot if what was said and judge it on my own instincts. I also stopped must of my meds (personal choice) until I was desperate. I had to have blood thinning injections from the day I found out until four months after she was born. I used to do the. Myself they really aren't that bad. To be honest I have struggled more sine my little one was born and have been I. A constant flare so that has been really hard and I am lucky that I have a good support network. All that aside my little girl is worth every minute of pain. If you would like to ask me any more questions pls feel Farr to pm me.

I wish her lots of love xx

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Hi, I have two young children- aged 4 and 14 months. The eldest was pre-BD diagnosis. Pregnancy was totally normal. The second was conceived just before my diagnosis. I was not allowed to take any meds during pregnancy. The BD symptoms died down, but in third trimester I developed chest pain and collapsed. They thought it was a blood clot and I had to inject blood thinners for the next eight months. Turned out to be pneumonia and a collapsed lung. They think it was bad luck and not connected necessarily to BD. I could not carry baby full term though, as I was too sick. She had the steroid injections for her lungs so was miraculously very well and a good birthweight considering. After I had her I felt very well for 2 to 3 months. Then I had a horrific flare which lasted for about 9 months. I believe this is common.

I had a C-section due to the BD. My obstetrician was well prepared and they awaited signs of BD in the baby (e.g. mouth ulcers etc from birth onwards). Looking back now, the hardest part was not the pregnancy or the collapse, but caring for a young baby during a very bad flare. Trying to have enough energy for my four year old also was tough. I'm lucky to have an excellent support system. Best of luck to your daughter. Each BD pregnancy is totally different but if she is with Prof Fortune she is in great hands. x

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Hi Tamirra,

Like you said, it's different for everyone. I have a 4 year old and 22 month old twins. I was very well during both pregnancies, but with both started flaring a little bit right at the end (mainly joint pain) and then had big flares after both births. I am still struggling to get things under control after the birth of my twins, but I think I've been quite unlucky. My understanding is that the changes in your immune system with pregnancy then birth can have an impact, but I was chatting to someone else with BD the other day whose symptoms got better after her children were born, so it is very individual. Good luck to you and your daughter.

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Thank you all very much for your supported imputs i will pass these onto her. Answer to Sian, yes she was fine during her pregnancy but hadnt been diagnosed at that point. Thanks to you all, but still open for more experiences. x x

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Hi there, I had two successful pregnancies within the last three years. I had a complete halt of my symptoms save for a bout of central serous retinopathy in my left eye both times.

I had some other complications that may or may not have been attributed to the BD. I had high bp with both pregnancies, but in the second pregnancy I actually developed pre-eclampsia. Also, I had placenta previa, PUPP, and hemorrhoids, but the last two are not uncommon with anyone.

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Thank you for the positive answer, i suppose i want all possitive answers but i know thats just impossible to get. x

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I would say it's very positive! So worth it. Tell her she has as much chance at a normal pregnancy as anyone!

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Tamirra, just a quick pat on the back to you. I really respect that you are supporting your daughter to find the information to help her make this decision. I know from previous posts that you help her a great deal and I think it is very selfless and supportive of you. You are a great example of a caring mum. Jill

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Thank you so much Jill, that means alot, i do try my best to support her throughout, always have always will. xx

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Hi, I had both kids before my diagnosis but suffering for 20 years ( had kids when I was 37 and 39) > It was the only time I was ever totally symptom free .!! Great stuff

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Hi, I had a 2 year battle to get pregnant with 2 losses. Not sure if that was bad luck or the endo or pollycictc ovary problems associated with my BD. but once pregnant with my daughter it was the best I had felt for 12 years. Then my second pregnancy again I felt fantastic until I ended up sick at 30 weeks as my liver stopped working, having my son at 33.5 weeks. He was skinny but healthy. I was OK but didn't clot for a few weeks, taking about 3 months to feel strong again. Then at 6 months old I had another 2 cysts burst on my naughty right ovary again. Have been explained that these are most likely ulcers as my body was having a melt down. I desperatly wanted more babies but specalists said that was it & to be greatful. Which I am. Good Luck.

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Morning, I know everybody is different and maybe I was just very lucky buy I had two beautiful pregnancies and even one homebirth although I'm on prednisolone. But I found a consultant, who really tried and found out that I can take the extra prednisolone orally instead of intravenous. Anyway, I felt much better during pregnancy and even reduced the steroids. The first 4month after the birth were good too but then I flared quite badly both times. Lack of sleep and breastfeeding just was too much. I would still do it the same way and am so grateful and feel so fortunate to have these two little souls in my live. It's a juggle sometimes, especially without any family support it's all just up to my husband and myself but as they get older, my daughter is 5 and my son 20 months, the magical moments are certainly taking over.

Hope this helps but in the end she will only know once she's gone the way.and it looks as if she's got a supporting and caring mum on her side so however she decides she won't be alone. That's so good!

X hannah

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Thank you josa, and im glad to see you also had a natural birth which my daughter does want this time as it was taken out of her hands on her last pregnancy. Thanks x x

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