Behcet's research: Simple words on this support... - Behçet's UK

Behçet's UK

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Behcet's research

amietamant profile image
5 Replies

Simple words on this support site: okay, I get it. Differences can be aired in private emails.

I'm pleased with the support and thank-you's I'm receiving privately for the info I have posted online. Patients interested in current Behcet's research findings and medications can find postings and discussions at the Yahoo behcet-support site.

I was an invited speaker at the recent Yokohama ICBD conference and am planning on presenting at next year's Paris Behcet's conference as well. Some of my current research projects include defining types of remission in Behcet's; familial Behcet's in non-Silk Route patients; and less toxic treatments for Behcet's ulcerations and arthritis.

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amietamant profile image
amietamant
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xandii profile image
xandii

Thank you so much for taking the time to point me in the right directions for my study program.

I will track down and read with interest the research findings on the yahoo behcet-support site and try to get a bit more educated about the medication used currently from the postings already in situ.

I will watch with interest for any information regarding the Paris conference next year. I assume the resulting notes of the conference and any finding will be posted on the Yahoo site and up for discussion there. This will be something to look forward to reading when it becomes available.

Take care

big hugs xxs

andreafm profile image
andreafm

Thanks for your input. It is important to me to get updated information on research. I have to admit that I don't always understand everything I read but generally get the gist.

It is helpful to be pointed in the right direction to find this information. Especially as I am finding my cognitive problems are gradually getting worse and find reading lots of info all in one go is difficult for me. I get very tired easily when reading and

Research medical info can be complicated.

I think it should be left to individuals to decide if they want to read a post and allow the moderators to decide what is appropriate or not. Arguing on forums puts people off of reading and joining in an so I personally don't want this forum to turn into one of those types of forums that appear hostile

I do hope this doesn't happen

I enjoy everyone's input and find everything I read of intrest. If I don't understand I ask for more info and if I don't want to read something I move on to the next.

Opinions are Important but can we be kind to each other when giving them.

Hope I have 't upset anyone as I haven't meant to

Andrea

pheobe67 profile image
pheobe67

I totally agree about being kind to eachother. We all have a story to tell, we all have different experiences, we no doubt read as much as we can to try and gain a little more understanding into this awful disease. So, guidance from those with more experience is helpfull, I certainly don't see this forum as a place for budding academic no it all's that split hairs over words. I am glad of this site, people are kind and helpfull wich is rare in comparison with most sites today. For me personally, its a place I can come and ask anything even if sounds stupid, I can read and compare, empathize, share, learn, cry and laugh, but never criticize. Let's keep this site friendly, that in itself is a rare thing these days.

billi profile image
billi

Hi just looked back at postings and I do not find anything offensive or to get upst about. Bit like television if you don't like the programme TURN IT OFF but DO NO spoil it for others who may not have the same opinion. We are here to help each in many different ways and levels, so lets just do that. Hope you are ok and will continue using the site.

Hugs

Billi

Zebra profile image
Zebra

Your research is really valued. I would love to know more.

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