Bechets conference Italy 2016

[mtmunster]

Hi,

I was considering whether to go to the patients bechets conference in Italy in September. Has anyone been to the last conference which was held in Paris or any other ones before that? Just wondering if it's worth going to or if it's more for medicial professionals? Thanks.

[diyar99]

I was at last year one in london it is very good meting patient from every county and dr all new resarces somany benefit i will try to go to italy

[lovenothate]

Hi mtmunster,

I attended Paris 2014 and I highly recommend it. There is a conference for the medics which runs alongside the patient conference, but the patient conference is its own entity.

In Paris there were no more than about 20-30 patients in total, so it was small, but there were few of us patients from the UK, plus individuals from as far afield as Kenya, Australia and Iceland.

We heard from some of the professors who are regarded as the leading authorities on Behcets from around the world and it was incredibly interesting to hear of all the latest research going on and the latest advice for medics and patients.

Another UK patient and I were considering organising a trip from the UK so that anyone who would like to attend but would rather do it alongside others in a similar situation can do the journey and the hotel stay as a group with support from each other.

If you'd be interested in joining together as a group - and anyone else who's reading this who would be interested in doing the same, please message me on here and I'll put everyone in touch.

All the best,

Will.

[goodlife in reply to lovenothate]

Hi mtmunster, Will and I actually met up for the first time at the Paris Conference.

It was my first International Conference and I did find it physically challenging but echo all Will's comments in that it was very worthwhile from an information and from a community perspective.

I am a Trustee on the Behcet Syndrome Society and we have a conference call next week so I will ask if we are planning to organise a group to travel together or we can decide if a group of us want to hook up informally and travel together.

Hope this answers your questions?

x

[lovenothate in reply to goodlife]

Hi good life,

Just a quick one to ask is there is any update from your conference call? If the Society aren't planning to organise anything specifically, it would be good to start making plans.

Also, do you have the specific dates and location please?

Hope you're doing ok,

Will 😃

[lisamadd in reply to lovenothate]

Hi if u is organising that could u let me know I am in ireland and don't know anyone else with this .

[mtmunster]

Thank you all so much for your replies. It sounds like it would be worth visiting. I'm actually living in Ireland but I would be interested in joining up with you in Italy/meeting you at the conference for sure. So if you could keep me in the loop about it that would be absolutely great. Thanks again for your detailed reply and kind offer to join up. I've never met anyone with bechets (!) so it would be great to meet people in a similar situation to mine. Mary.

[maxpu]

I'm glad to invite you to the next Conference of SIMBA (Italian Association of Bechet Patients) in Italy. Last time was also involved the CEO of Bechet Hospital in London a very nice person. Marco

[mtmunster]

Thanks very much Marco that is great. Lisa, as you're also in Ireland if you would like to chat to me anytime please feel free to PM me. Mary.

[Hidden]

It all depends on the cost. But if Behcet's society is organising the group trip, I would like to find out more. Thank you.

[Michja]

Ooooo I'd love to go again but from Australia, it's unfortunately just too costly. I learn't so much about Behcet's and how it differed from patient to patient. I devoured the information on the medication and holistic views. I'd recommend it to all patients and there specialists if they could manage it.

I now have a different group of questions as my daughter is hitting puberty at 13 years of age and she's experiencing huge amounts of inflammation all over. Although she's on all her usual medication and her 4 weekly Infliximab things are not so good, in fact she's a mess. Last Friday she had to have high dose IV steroids as well as 25mls tablets for the next 2 weeks, possibly longer. She hates this as it makes her puffy and that's outweighs health for a teenage girl. But she knows it's for the better. The specialists are thinking she needs to be on 5mls steroids daily and possibly 3 or 2 weekly Infliximab.

My son has just turned 12 and is going much better on colchicine. His ulcers have reduced and is Asthma/Chest problems have nearly stopped. Has anyone ever had ulcers or inflammation on the lining of the lungs?

All the best,

Michja