Conference in Peterborough

[bailey23]

Hi all

Is anyone a member of the Behcets Syndrome Society? I am going to the Annual General Meeting on Saturday 13th October. It is being held in Peterborough and although it a long way for me to go, they have guest speakers who can discuss various issues like pain management.

Is anyone else going? If not is there anything that people want me to ask while I am there!!

Angela

PS Will probably have to sleep for a week when I get back!!

[tamirra]

We would likemto go to one of the meetings but again we live right down on the South coast of Kent so much too far, bring back as much info for us as you can Angela please. x x

[devonshiredumpling]

Yes, I am a member of BSS but from North Devon to Peterborough is too far for me, I'm afraid. North Devon to Bristol results in a week flat out, so gawd knows what a Peterboro trip would do :0( It's such a shame, you will be in a position to learn such a lot and get answers to your own questions. As for my questions, I never even think of them till it's too late and I wish I'd asked!

[Jazzy21]

Being in Scotland it is so difficult to get down. I would love you to ask if peripheral vision can go without any clinical reason as it has for me. This would help me so much. Yaz

[bailey23 in reply to Jazzy21]

Will do x

[Hidden]

There's already a thread about this, so you can find some more info and comments about it here: behcetsuk.healthunlocked.co...

[Alipem]

im a member and im going so be great to see you there

[jkdee]

Hi Angela, I have syringomyelia as well as Behcet's this is a cyst on my spinal cord at C7 as I cannot make the conference can you please ask on my behalf if this is in any way related to Behcet's in particular neuro bechets ? I hope you don't mind but this is out of the remit of my very good GP. Many thanks

Jackie

PS I am a member of the society

[bailey23 in reply to jkdee]

Will do x

[jkdee in reply to bailey23]

Many thanks

[lizzykarma]

i think im going hun. Newly diagnosed so the more info the better really. im also kinda hoping it will help my bf/mum understand my cond more n what im experiencing x

i live in liverpool a 3n hlf hr journey. i plan on sleeping in the car. but yes i know what il be doing all day sunday and monday x

[Hidden]

I wonder who the 'clinical leads and representatives from the centres' are. I'm thinking of Jackie and Jazzy's questions and wondering if there will be someone qualified to answer them, or time to ask. If not, I believe you can email the Society's panel of experts.

[devonshiredumpling]

Clinical leads usually refers to the medic who is 'boss' of a particular department. That person is almost always the person with the most knowledge. Representatives could be anybody from receptionists upwards!

[Hidden]

As this subject appears in two places, I'll post the same in both.

As far as I can tell, those going (or hoping to go) are:

bailey23, Alipem, Lizzykarma, Suenmike, Frisky & Tigerfeet. Sorry if I spelt any of those wrong, swapping back and forth between threads and trying to remember. As there will be a lot of people there, I'm wondering how we will identify each other as it would be great to meet the people we have been talking to. What do you think? I wondered about a sticky label but that depends on what you are wearing. Ideas everyone. Also, don't forget to email the Society if you haven't already - they need to know numbers.

[toothfairy in reply to Hidden]

I'm going

[Hidden]

Edit, missed out Kenjay.

[Hidden]

We will be given lables to write our names on when we arrive, so I'll write the name i use on here and my real name on mine - hopefully we will have time to at least say hello.

[Debs12]

I'm also going. It's my first time at the agm and looking forward to meeting everyone!

[jkdee]

Hope you all enjoy your day tomorrow, and to thank you all in advance for any information you bring back to us all. I have a a really bad week this week. Had my endoscope on Wednesday didn't enjoy it but had to be done. They wouldn't give me sedation as Tuesday evening I collapsed and they said until they know what caused this, sedation was a no no. So brave old me had the throat spray. Off to docs this afternoon to try once again to sort me out. My hubby coming with me to explain what happened when I collapsed as it scared the life out of him. Has anyone else ever had this fainting/collapsing. Not sure if it to do with BD or the other rare illness i have, syringomyelia. Thank you for listening/reading its great to off load to people who know what I am talking about.