Hi my names Deb. I have behcets just finding it hard at the moment and wondering if there any support out there ?

[debs1963]

Hi my name is Deb just wondering is there azny support out there for behcetes ?

[andreafm]

Hi Deb

sorry to hear you are finding it hard....can any of us help you here ?

The Behcets Syndrome Society also have local support groups in some areas

behcets.org.uk/membership/ and behcets.org.uk/local-suppor...

They also have an email address and phone help line that you can contact them on

behcets.org.uk/how-to-conta...

behcets.org.uk/ under the banner of "Contact" you will also find the Centres of Excellence in London, Liverpool and Birmingham and each Centre has it's own supports worker and how to contact them.

Lots in info to get on with and we are a friendly bunch here and support each other really well.

Please feel free to fire away with anything that's bothering you and I am sure we'll all do our best to listen and help.

IF YOU WANT TO MAKE YOUR POSTING PRIVATE - YOU CAN EITHER EDIT THIS ONE BY CLICKING ON THE EDIT BUTTON [NEXT TO THE RECOMMEND SIGN] AND THEN CLICK ON THE "COMMUNITY ONLY" BUTTON AND THAT WAY IT WILL BE PRIVATE TO THIS GROUP MEMBERS ONLY

[marktiger in reply to andreafm]

Hi there is also a facebook group you can join which is a closed group for people with Behcets its called Uk Behcets Contacts only

facebook.com/groups/1944276...

hope this helps

[andreafm in reply to marktiger]

thanks very much marktiger....as the group is closed.....do you have to have someone who is in the group invite you or do you just click on "join" and then wait to be accepted ?

[marktiger in reply to andreafm]

you need to be invited I can do this but need some way for them to contact you my facebook is Bren Payne or i just got this back from them

They can be invited by a member and added by an admin. They need to be a friend of that member. The alternative is to give their details to an admin so they can befriend them and add them

[debs1963 in reply to marktiger]

Thank you I will try to add you on face book . My name is Debra Evans

[Zebra in reply to debs1963]

Debra I will gladly add you to the group. Will try to find you on facebook x

[Zebra in reply to andreafm]

Hi Andrea, I admin the group. If you are in (or from) the UK then post or message me a link to your Facebook profile and I will send you a friend request so that I can add you to the group. Best wishes

[debs1963 in reply to andreafm]

Thank you

[marktiger]

ok

[marktiger]

Hi just changed profile pic to the one one fb to make it easier

[debs1963 in reply to marktiger]

Still trying to find you .

[marktiger]

email me at [e-mail]

[debs1963]

Ok will do

[Jackie_1234]

Hi deb how are you ? My name is jackie my daughter is 17 and has been diognosed with behcets as well it started affecting her since she was 13 were here for u ask any questions we will try to answer and help !!

[debs1963 in reply to Jackie_1234]

Thank you

[debs1963 in reply to Jackie_1234]

Thank you

[Kat70]

Hi Deb. We're all here for that very reason, aren't we? This website is the first time I have found support and information for this frustrating disease. It's such a relief to read and converse with people struggling with all of the various symptoms that go along with it. Hang in there!

[debs1963 in reply to Kat70]

Thank you. I'm on Feb if you want to add me? Debra Evans .

[Jackie_1234]

Hi deb my name is jackie my daughter is 17 and has had behcets since she was 13 please feel free to ask us anything we will help in anyway we can !!

[debs1963 in reply to Jackie_1234]

I'm on face book if you want to add me? Debra Evans

[shazguy]

Hi Deb,

My name is Sharon and yes there is lots of support for people with Behcets

I was reading your other replies and the FB stuff sounds very complicated!

I would recommend the Behcets Syndrome Society they know all about this horrible syndrome and their telephone helpline is staffed by volunteers who either have the illness or someone in their family does. you don't have to be a member and can just call up for specific info for a particular symptom/problem or even if you just need a good old moan and gripe about everything! they will always listen and never judge. They will also be able to tell you where your nearest support group is located as there are now dozens of them around the country. They can also tell you where your nearest "Specialist" Consultants/Doctor's are.

They sound like they are a really big name foundation so it might surprise you to know the following facts: They are staffed completely by volunteers who work from their own homes, they have no offices, they have no income except donations from members and fundraising by members/members families and there is less than 2000 people in this country with Behcets Syndrome, although sadly this will be increasing because it is now finally being diagnosed more now that the society has managed to raise awareness of this rare illness within the medical profession.

I tell you all this cos' I wasn't too impressed with how brief and abrupt the reply to you from the society was and I was afraid you might have been scared off by them sounding too official! and hopefully now you know that they are just ordinary people like you and me trying to get through what this horrible illness throws at us and you might be willing too give their website or helpline a chance.

behcets.org.uk

Helpline No: 0845 130 7329

Much love and support comin' atcha'

Sharon

[andreafm in reply to shazguy]

Good advice Sharon...

Just to let you know that the Behcets Society website is down at the moment but should be up again soon....this may have been the problem that Deb had when I posted my reply.

Some people prefer the Facebook style and that's o.k by me...I have a FB account myself for friends and family, but personally like the more in depth nature and style of this group.

I am sorry Sharon, if you think my reply was sounding official...I know information like this can come across as sounding official sometimes.....especially in the written word where feelings can be misunderstood easily.

I am a sufferer myself and have been for over 20 years and have been joining in with most of the posts since the HealthUnlocked Behects group started. I also look towards this group as a source of support to me and so I am the same as anyone else here and not a professional. My reply was not officially from the Society.

I was asked by the Behcets Syndrome Society to be a volunteer on here to relay back any problems and so there was a friendly face to guide people to the right place for support [as there wasn't really one before]........ I did wonder at the time if by agreeing to be a volunteer, it would make a difference to how people perceive what I am saying.....up until now that hadn't happened.

I try to gage my reply to the persons post/question and read it that Deb wanted to be guided in the right direction and not actually wanting support from us, which is why I asked her if we could help her here.

I am not one to drag information out of people and am concerned at people revealing their very personal thoughts on the "everyone" setting as it does got out on the whole of the internet. Had she come back to me, I would have replied with a more personal answer.....I assumed she was happy to go through Facebook and was glad mark was trying to help her with that.

I apologise to you and Deb if it came across like a robot...it wasn't my intentions and hope that I didn't scare Deb off

[shazguy in reply to andreafm]

Hi Andrea,

Sorry if I sounded too critical

I was just concerned that Deb was being "Overloaded" with Contact info' and not enough Empathy or Sympathy. I know there is "Unreliable" info' out there about Behcets and wanted to nudge her towards The Society. If you look again at my Reply, you will see that I explained to Deb about how the society is run and managed by people in the same situation. I think I am "Mildly" ! OCD and do go overboard sometimes, so again I apologise if I sounded like I was directly criticising you.

You are doing a great job and there does seem to be a need for Info' and support on this site, so please keep up the good work.

Many Thanks,

Sharon

[andreafm in reply to shazguy]

Hi Sharon...no problem

I am thankful for your explanation and apology as not many people would have bothered or could of made it even worse. It's to your good character that you have replied and I agree with you about "unreliable" info, which is why I too tend to stick with the Behcets Syndrome Society links for this.

Thanks again and take care

[Sunset]

Hello;

I can say for Behçet's disease. I understand very well all the people who were diagnosed with Behcet's. I did interviews with university hospitals and pharmaceutical factories in my country. I did not get a positive response from both units. There is nothing to be done about Behcet disease so I'd like to discuss with the doctor. Behcet's disease occurs in people with suppressed immune systems.