bechet`s disease

[tamirra]

Hi can anyone please give me any info on the above disease please. Thank you

[boxtops]

Have a look here
http://www.nhs.uk/con...ges/introduction.aspx

(It's spelled Behcets which is why you may not have been able to find anything?)

[Sqad]

tamirra........haven't you asked about this condition before?

[tamirra]

Yes i have Sqad but my daughter is at the moment having a re-lapse but its not well known enough in this country, what i need is info from Turkey where its a well known disease. x

[Sqad]

tamirra....it is very well known in the UK and has been for 60 years.

Why Turkey?

[tamirra]

As Turkey has the most people with the disease, the hospital told us yesterday that there is no test that they can perform on her to diagnose it as its not known well enough in the UK.

[Sqad]

My comment is not to you tamirra, but to the alleged comment made by your hospital..........balls.

[tamirra]

Sqad please can you help me, my daughter is at the moment crawling on all fours trying to get her baby dressed as her legs are so badly swollen with the arteries are enlarged and we just dont know what to do. Please help if you can

[tamirra]

Can nobody help us then? Thanks.

[poodicat]

Hi tamirra,hope you get some answersxx

[Count-A-Strong]

http://en.m.wikipedia...se?wasRedirected=true

[tamirra]

Me too Poodi, im at my wits end here, the hospitals keep poo pooing Behcet`s but we are quite sure that it is, ive just e-mailed a couple of Turkish hospitals and translated it so they can understand what im saying, she has been so bad yesterday and today her leg is like a tree trunk but a blue purplely one its awful she is so depressed about it. Hope your ok, email me if you like. xx

[tamirra]

Thank you for that count it was interesting, the pictures it shows looks very much like what she has at this moment in time, i might ask the hospital Wed when we go back for blood results if they can do the skin prick test. Thanks again. xx

[Alliegid]

Try www.behcet.org - they may be able to help :o)

[Alliegid]

Sorry that should have been www.behcet.org.uk or try Helpline on 0845 130 73229

[Alliegid]

Rubbish at this today, my apologies - I'll try again

www.behcets.org.uk

[tamirra]

Thank you Alliegid but she has been diagnosed today with behcet`s disease.x

[Alliegid]

So sorry to hear that Tamirra - though I understand that the society is for the benefit of those who have the condition (syndrome/disease)
A friend's daughter has it and I was typing something up for her - which is why it came to my attention
All the best x

[tamirra]

Alliegid your friends daughter has it, how long has she been suffering, what nationality is she, can you give me any details of how she copes and things we might need to know, what medication has she been put on, this may be so helpful. Thanks so much

[Alliegid]

I don't know too many details - more daughter of someone I know from church. Our Church Harvest appeal is for the Behchet's Syndrome Society (& I type the stuff up, so it has come to my attention. The daughter looks to be the chair of the society - Jan Mather (there are various bits & blogs about her on the website).
Sorry I can't be more help - One of my children has monostotic fibrodysplasia, so we are not strangers to weird medical stuff.
All the best x

[tamirra]

Alliegid is there anyway you could possibly see if you could give me her e-mail address as i really need to know more about this disease, i am aware of how serious it can be and need to speak to somebody in my daughters situation, if you can not get me the e-mailmaddress would you be able to give me a help group for Behcet`s. Thank you