Support Groups

Hello again Everyone.

I have been overwhelmed with the amount of welcomes and good wishes I've received from you all! I do apologise for the amount of time it has taken me to respond to some of the messages. My post for the society is part time, and presently, I am working 3 days a week. Please feel free to leave me a message and know that I will respond as soon as I'm back at my work computer. I've already received lots of helpful information and advice, so please keep it coming!

I do have a few questions to ask today. Part of my role will be to establish the need and interest of setting up support groups. Initially I will begin with London and work my way through Kent and the south. I certainly do have a large area to cover!

How many of you live in London or close enough, and would like to join a support group? Do you already attend a support group? Is it easy or difficult for you to travel? If I set up a one time trial, would you attend?

Thanks so much for your time.

jean

[andreafm]

I live near heathrow airport and find it difficult to travel to london. I would like to meet up with others near to me or at least be in touch, but the travelling does cause me an issue. I cannot use public transport very easily at all but by car some parts of london are easier traffic wise than others.

I would be willing to give a meeting a try if one was set up that wasn't too difficult to get to.

Thanks Jean

[Hidden in reply to andreafm]

Thanks so much for your response and support. Right now, I'm taking a list of interest and will try and come up with something easy for the majority, I hope. We can only try.

Perhaps I can find out where others live and set up smaller local groups.

I'll keep you posted.

Is this the best way to stay in touch? If you are happy to message me your email address, I will keep it confidential but hope to send out a group email when I finally get a group established.

Thanks again!

[Roxybaby]

Hi I live near Ascot Berkshire and again don't like to use public transport. It would be good to attend a group though!

[Hidden in reply to Roxybaby]

Thanks for this Roxybaby. Feels like I am beginning to get a better idea of patient needs and ability. I'll keep you posted.

regards,

jean

[tinkmbs]

Hi jean

Welcome, I am sue and I live in Swindon Wiltshire again I too would find public transport difficult to London but would give it a go if I needed to just to meet our friends on here. Pretty lonely not having friends to turn to with this condition. I know most of us have family and I am sure some understand us but they can't feel and see the pain we go through every day.

I would truly love to meet everyone with BD.

Thanks Sue xx

[Hidden in reply to tinkmbs]

Hi Sue,

Thanks for your message. I will definitely put your name on the list I am compiling. At the moment I am trying to see how many of you can travel to London. I am finding that it isn't always easy for everyone to travel such distance. I'm sure as you say, it would be really nice to meet others from the society and those with Behcet's.

Have you ever posted on the forum asking if others live in your area? Maybe start a Swindon area group??

kind regards,

jean

[Coll1609]

My 18 year old daughter has been diagnosed with possible Bechets we live in Cardiff and would love to be able to attend a support group so she can meet and realise she is not alone we are hoping to attend the conference in October if she is well enough

[Hidden in reply to Coll1609]

Good morning Coll1609 and thanks for your reply. What a good parent you are joining the Bechet's society forum. Does your daughter also belong? I just suggested to another member the possibility of posting a notice asking if there are others living close by to you or are of a similar age. This is such a supportive forum and your bound to get lots of replies. Otherwise, perhaps your GP or medical consultant can help?

As I'm new in this role, I will check and see if there is a contact in Wales or any existing support groups in your area and get back to you.

Thanks so much for your reply and best wishes to you and your daughter.

jean

[Hidden in reply to Coll1609]

Hi again,

Just wondering if you could message me your email address and I can pass them on to the person dealing with the Wales Support Group.

Thanks so much!

[Zebra]

There is a Welsh group planned and there is an informal Bristol one already. I know London will be well received.

[Coll1609 in reply to Zebra]

Where to in Wales?

[Zebra in reply to Coll1609]

If you ring the Society, they should be able to tell you who is co-ordinating this and where. Or if you message me, I can put your daughter in touch with four others in Wales. Where is she going for her treatment?

[Coll1609 in reply to Zebra]

Thank you my daughter is seeing a Rheumatologist at the University Hospital of Wales

[Hidden in reply to Zebra]

Hi Zebra,

Great news! Are you in Wales or Bristol? I'm looking to help a parent who is also on the forum and looking for some support in or near Cardiff. As I'm new to this, I need to further investigate.

Thanks for your support!

jean

[MrsBeau]

Please add me to the list. I can't come out very easily as I have limited battery but I would like the option if I can. God only knows what I would do without the internet, tbh.

Beau.

[Hidden in reply to MrsBeau]

Thanks Beau.

I will certainly keep you on the list and informed of my progress (could take a couple of months)

I agree, the internet is such a life saver for many, especially those who can not get out and about easily.

Thanks again for your support.

jean

[jkdee]

Hi all and especially Coll,

I am from Cardiff and have been contacted by Chris at the society if I would be interested in helping to start a support group in this area.

Where to in Cardiff do you live Coll as I know of and contact at least four others 3 from Cardiff and one lady from Caerphilly. I regularly speak to two and my friend is in contact with the other two.

Would also like to know which consultant your daughter is under at UHW I attend UHW too. Not happy there at present looking into changing consultants as we speak.

Would love to hear from you

Jackie