Apologies ......

[bailey23]

Sorry to those people that I promised to ask questions for at the weekend at the Behcets AGM. I didnt make it there as was feeling poorly and came down with a sinus infection. Would love to hear from those that did attend!

Angela

[Hidden]

What a shame you were too poorly Angela. The next AGM is in the midlands, I think on 19th October. I don't think you would have been able to ask those questions anyway, as it was a packed and tightly run programme and there was a request not to ask personal questions. Those who wanted you to ask questions for them (can't remember who) can ask the Society via email. I expect there will be some posts about our experiences of the AGM here and I think there will be a review published on the Society website in due course. Hope you are feeling a bit better now.

[myfabgarden]

Hi there, I went to Peterborough. It was held in a lovely venue, everyone seem to be happy and positive which was great. You missed a lovely lunch with lashings of tea and coffee all day- { kept me awake great! }. It was so nice to meet the BD sufferers, consultants and staff. Everyone had their own story to tell - everyone I spoke to seem to do the same as me - laugh-smile- and keep as positive as possible. I found the hardest part was meeting the people who where and are suffering the most. I think its the total realisation of the disease - { although I dont think I'll ever get used to it or even get my head around it! } There where talks from the society people and consultants - Drs etc - The guy [ consultant I think] from Cambridge did a amazing presentation on the where/how and whys of the immune system and how immunosuppressants work. The top peeps from Birmingham and London gave very good presentations too - They all seem to explain a lot to everyone there. There was a full room with a lot of questions fired at them to which all seemed to be answered in detail.

Just like to say thankyou to all concerned with the seminar.

Its such a shame you where to ill to attend and I hope you feel better very soon best regards

[Hidden]

Interesting point about the people who are/were suffering the most - regarding those who have BD, it's so hard to tell when most people look ok and even when we talk about it we don't all view the severity of our disease in the same way.

I suspect if anyone with no knowledge or experience of BD were to peep into the room and see so many smiling faces they would find it hard to accept or understand how ill everyone is Good on yer all BDers I say!

I was particularly interested in Dr Jayne's presentation on biologics as there were some things there I am going to discuss with my Consultant. In our often isolated BD world we don't know or understand all the things that happen to us (nor does anyone) but we can be more knowledgable about what is available to us I am grateful for that.

I hadn't realised how much hard work, effort, time and money had and will be put into the Centres of Excellence. I was excited about them and grateful for them before the AGM, I am even more so now.

I would like to add my thanks to the organisers, a tiring but absolutely top day.

[devonshiredumpling]

It's good to hear it was good; I would have loved to come. I've always wanted to go but this year, when I now know so many other sufferers, I really really wanted to come.

There are very few events that take place down here in the extreme South West - not just BD things but also things that are relevant to other parts of my life. Still I moved here for the scenery and the softer way of life and we have that in abundance

[Hidden]

It's in the Midlands next year, Oct 19th. Don't know if that's doable for you? I know several people who travelled a long way broke their journies by staying overnight, but that in turn means ££££'s so I appreciate how difficult it is for many. This was the nearest one to my hometown but was still a couple of hours of travelling each way.

[SuenMike]

As it has been said before, it was so good to meet other people with the disease. Yes, we all smile and laugh a lot. They say laughter is the best medicine!

Dr Jayne is my consultant, and it was so interesting to hear about biologics. (I am on the program myself). I believe it is probably the way forward.

He showed a picture of the new MRC building on the Addenbrookes campus. I send it my love every to it every time I pass it. My daughter in law works there on a team concerning biologics for MS. As BD is so rare unfortunately no drug research is being done specifically for us, but there may be something to help us via, say Rheum. arthritis, which is also an auto-immune disease.

The meeting was very uplifting