Just wanted to say what an amazing day we had yesterday at the first Vasculitis Patient Symposium, to run along side the Vasculitis 2015 Medical conference. It was attended by over 122 people from the UK, Europe and the US. Lots of discussions and new friendships made too. 😊
Over 18 doctors, from the UK, Europe and the US, who have an interest in vasculitis, attended and spoke at the Symposium. Some were collecting data for clinical research, everyone took part in the surveys and questionnaires with enthusiasm. 😊
The doctors were brilliant, informative, personable, approachable an friendly. 😊
Also wanted to thank the Innov8 Conferences Team for looking after everyone so well and to all the volunteers, fantastic team work... ☺️ Look out on the website in the very near future for photos, video and report. Hopefully a special edition of the Newsletter in the Autumn.
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Suzym2u
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I attended the conference on Saturday, as a GCA sufferer, and can whole heartedly agree to what an excellent day it was. The experts were all very approachable, and keen to advice and offer their expertise. It was good to hear so much research is now being undertaken in Vasculitis. All the specialists gave very good presentations, and kept everyone interested. Thanks to the volunteers who donated their time, everything seemed to run smoothly, so well done to everyone involved. Food was lovely too
This was the first patient symposium I have been to, or heard of, but hope there will be many more to follow in the future.
I would like to thank John and Susan and everyone else involved for all the hard work that went into organising the event to start with. It was very informative and great to know that so much research is going on to at least alleviate some of the symptoms if not find a cure. So good to see the doctors and other experts so passionate about vasculitis.
Couldn't agree more! It was a brilliant day, very informative and very well organised and I have to say that the speakers were absolutely first rate. I wondered if I would get bored and fatigued by mid afternoon but the speakers were exceptional and I'm so glad I didn't miss them. At some points we were all laughing as though we were at a stand up comedy which isn't bad going considering the topic! I feel so much more informed and positive. Thank you to the organisers and to the professionals who so generously gave of their time and expertise in such a patient centred way.
All the sessions were filmed and should be available on the website shortly
Susan
• in reply to
They said that the gold standard for diagnosing GCA was the temporal artery biopsy. There is also ongoing research into trying to predict who will get ischaemic complications ( sight loss etc ) as these are the patients who really need high dose prednisolone. They also said that they felt that disease only involving the Aorta had a better outcome than temporal disease and was easier to treat. Also that they were working to identify and evaluate imaging modalities to make sure they had the same degree of efficacy in diagnosising GCA as TAB. ( ultrasound, MRA, CT/ PET etc ).
They were excited about the ongoing drug trials ( GIACTA ) and there is an American based trial looking at Abatacept as an treatment for GCA. They really wanted to lower the burden of high dose steroids side effects to patients. It was a really interesting session and we had the opportunity to ask lots of questions. 😄
Thank you Suzym2u, I will circulate the information to my contacts
I would like to see a logn term study comparing those who take the biopsy option with those who don't!
• in reply to
To study what? The biopsy is a means to diagnosis, that is all. There were 3 experts at the GCA talk, 2 professors from the UK and 1 from Spain. They were all keen on having something in place to confirm diagnosis given the burden of high dose, long term steroid treatment which sometimes does more damage than the disease itself.
The TABUL study will be reported soon so maybe ultrasounds will take over and TAB will be obsolete. 😄
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