Pregnacy with Behcets, been advised by CofE to get proper sunglasses for Behcets sufferers??

[tamirra]

Hi, we went with our daughter to the CofE in Whitechapel yesterday for a change of meds as she wants to try for another baby, can anyone give us there experiences of their pregnancy while taking Azathioprine please, also she has been advised to buy special sunglasss for Behcets suffers and not to just wear optician sunglasses or any other designer ones, they said we can find them online but we dont know where to start looking, so advice on this too would be appreciated. Thank you

[billi]

Hi and I think I can help with both questions. Firstly I had my second child at the very onset of Bechets thinking I was just run down, and still suffering the after effects of malaria. I had my third child whilst still undiagnosed but suffering most of the symptoms. I was abroad no not on any medication with either pregnancy and I was quite old 35 and 42 years. As with many autoimmune diseases I was absolutely fine with both preggies and felt very well also I always have to have Caesarian. I continued to feel well whilst breast feeding my second for about 10 months and my last child for about 16/18 months and then I was forced to stop as I became seriously ill with BD and about 5 years later eventually got my diagnosis.

As to your second question. I have needed to wear specs all my life and have always attended local independent optician and luckily they have a good understanding of Behcets and I have no trouble with my eyes thus far. I also use an independent dentist ( useful whilst pregnant) and find most of them also are aware of Behcets.

I do hope this helps. Obviously we are all different but I for one have never let the disease take over my life, and believe me I have had some very bad and long flares.

Good luck and I wish your daughter well.

Hugs

Billi

[Meep]

I have had two successful and pretty much problem free pregnancies. For my first I was un diagnosed and un medicated. I had symptoms prior to pregnancy but they improved during pregnancy and returned about six months after birth, around the time I was weaning. The second time around I had been diagnosed, I stopped colchicine when I suspected I was pregnant. I had alot of skin and joint symptoms in the second trimester and was very tired throughout. Things improved a bit in the third trimester. Both are now happy and healthy. Just a note, both were born "sunny side up" and I had back labour for both. I wouldn't recommend it to anyone! I had very short labours, and my daughter was born in the bag of waters.

I would be interested in the sunglasses too, as I hadn't heard about them.

[tamirra in reply to Meep]

Thank you for your reply, so you had natural birth with both, which is what my daughter would like this time round as she had a c section with her 1st due to strep b, she did read on the phamplet at the hospital that bd patients are recommended to have c sections due to the stress of a natural birth?? xx

[tamirra]

Billi, my daughter was advised NOT to use any high street optician for the sunglasses, but you have, and you have found this fine with your photosensitivity? x

[Meep in reply to tamirra]

I have prescription glasses and my optician recommended a coating that darkens in sunlight and reduces glare. I have found they work well. I got my latest pair of glasses without the coating and I really miss it.

[Meep]

I wasn't diagnosed the first time and had a natural birth with no complications. Since I was diagnosed for the the second I was considered to be high risk, but no one mentioned a c section. My daughter's birth was uneventful, aside from the fact that she cracked my tailbone comming out, and was born in the bag of waters. My labour with her was only three hours start to finish and I am nearly an hour from the hospital so her birth was totaly natural, not even time for drugs. I was kept two nights for observation due to BD, normally here you can go home after four hours or overnight.

[tamirra]

Thank you Meeps, it makes me wonder why they told her not to get sunglasses from the high street, we are not sure what route to take now, we will most probally contact the clinic again, im hoping and obviously she is, that a natural birth will be possible. x

[fleurcompton]

I have had two natural births but as someone else mentioned both babies were back to back. I did take junior aspirin throughout both pregnancies. I have Inuit lenses in my glasses which are for light sensitivity with no prescription. They reduce glare but brighten, as it can be strange wearing dark glasses inside! I have been told to contact The Institute of Optometry in London for investigation. However this would be a private appointment as it is not available on the NHS.

I would be interested in others people's advice on this.

[tamirra]

Thank you fleur, can i ask where you bought your glasses from? did you have a big flare after your babies? xx

[jzeis]

I wrote a couple of posts for my "Essential Behcet's" blog about my two pregnancies and a survey I'd done in 2005 of 65 women in the US who'd gone through pregnancy with Behcet's. You can see both of the posts here:

behcets.blogspot.com/2009/0...

behcets.blogspot.com/2009/0...

The posts also include links to articles about medication use during pregnancy, and about Behcet's and pregnancy in general.

Also, here are some links for more recent articles about BD and pregnancy (written after my blog entries were posted):

onlinelibrary.wiley.com/doi...

onlinelibrary.wiley.com/doi...

ncbi.nlm.nih.gov/pubmed/252...

ncbi.nlm.nih.gov/pubmed/248...

ncbi.nlm.nih.gov/pubmed/247...

ncbi.nlm.nih.gov/pubmed/242...

Finally, if you'd like to see the Table of Contents for my latest Behcet's book, it's here:

bit.ly/1vgpeNM

Hugs for all...I've been through it myself, and it can be a tough experience. But I've got two beautiful (and healthy) kids and would do it all over again.

Joanne Z.

[tamirra]

Thank you so much for the information and the links you have sent, i will pass onto my daughter for reading.

[jzeis]

Wow, I've never heard of special sunglasses just for people with BD. Maybe they're talking about sunglasses with UV filters or blue-light filters? (Here's some info about blue light and possible eye problems: allaboutvision.com/cvs/blue.... You might want to ask for more information from the specialist your daughter saw -- they didn't give you enough info to find them online or anywhere else.

Joanne Z.