Just been sent this, interesting reading - Behçet's UK
Just been sent this, interesting reading
Very interesting - and almost hopeful!
I've read it 3 times and its still not really clicking, lol
C'mon Tamirra or Di you may have to summarize for medically inept ... Ha ha
Wow, ground breaking information, and just newly released. I've already been educating a few people while I've been in hospital - might point this out if they are interested.
Lesley
Oh my goodness! This is very good news and offers some much needed hope for all of us sufferers. It's so nice to see that there is actually good research being done on Behcet's out there. I have been feeling kind of hopeless lately with this stupid disease, but seeing this article has helped me regain some hope for the future.Thanks so much for posting this!
Jill-- this article basically is telling us that they have uncovered four new genes which are specific to causing an increased risk of developing Behcet's disease (other than just the HLA-B51 gene). What they have found is that these genes are also related to an increased risk of a couple other specific autoimmune disorders (irritable bowel; ankylosing sponditis; and psoriasis)-- which means that they can now classify Behcet's disease along with these similar diseases-- this in turn offers hope for more specific treatments for Behcet's.
In other words, treatments used in diseases like RA and Lupus are not going to be as successful in treating Behcet's, but treatments that are already being used successfully to treat these three similar disorders, will be more likely to help tame disease activity of Behcet's. Hope this clarifies things a little 
From what I can understand it sound very interesting. But this is way over my head. Paula x
This is very interesting as I may have another disease as well called Periodic Fever Syndrome which also hails from the silk road route. As I'm white british it's a bit of a mystery as to where in my family this may have come from. I'm off to The Royal Free rare diseases clinic on the 31st of this month so I should find out at some point in the future exactly what I have got. I have been dignosed with Behcet's but as you know that is always liable to change.
I attend St Thomas's but they have asked them and Guys to have a look at certain things as well as I seem to have so much going on. At least now after 40 odd years of feeling ill (and getting worse) I may get some answers, but it has been hell getting anyone to listen when I say how ill I feel, even though I have been hospitalised many times and nearly died several times. I am now on permanent steroids. I am allergic and intolerant to a whole host of foods, drinks and most medication. I take branded meds that I'm ok with and everytime I go into hospital I have to argue my case with the pharmicist. I always take my own in but that goes down badly with the staff. Tough they have to put up with it if I have enough. The last time they gave me something different I had to have an infusion of steroids (didn't work) and they ended up giving me an immunosuppressent drug to undo all the harm they caused me. This then affected my bone marrow. The consultant then came back after I screamed at him for not listening and he apologised. He said that sometimes drs don't listen to their patients. How true is that.
While I was in there I was on oxygen as this thing has given me copd. The consultants junior dr turned it off. She said I didn't have copd even though she had never seen the x-rays. When I saw her 3 months later she said 'oh sorry you do have copd.' I went to St Thomas's after that. I refused to leave my drs room until he referred me. I was so desperate for some help. The drs at St T's have been shocked at the lack of help and care I have had, but I know you will all understand that. I'll let you know how I get on.
I know exactly what you mean as i had to fight with our local hospital to take my daughters illness seriously, nobody knew what it was she had, even ofter septicemia and nearly dying they still didn't know, i done hours and hours over periods of months to try to find out for myself what was wrong, so in the end i diagnosed my own daughters illness but trying to get the hospitals to take me seriously was a nightmare, in there eyes what would i know, but i knew a hell of a lot more than they did. My husband is a Cypriot so we definitely know that my daughter has Behcet`s, yes do let us know what the outcome is. x x
Hello Jan
I so wish we didn't hear these stories so often and that the good practice we hear about was experienced by us all. I think the art is being assertive without being aggressive.
Please do let us know how you get on and I send the most positive vibes I can muster. xxxx
