Since being diagnosed with Behcets in 2010 I find that medical and other people do not know enough of this. When I was diagosed with fibromyalgia and chronic fatigue they had an awareness day. Is there an awareness day for Behcets if not could we do something for this to promote information and the support network?
Alison
Yes there is, more than one I think, and I believe it's included in rare disease day and vasculitis day and various other things - I'll try and find the details if no one else posts them up in the meantime.
There are lots of things we can do and ask our friends, family and colleagues to do, to raise awareness and it doesn't cost a penny - put posters, info leaflets and collection boxes in homes, shops, workplaces, dentist, doctor and hospital waiting rooms - any waiting rooms in fact. We can also ask them to collect stamps which the Society use to raise funds. Imagine how many that could be!
The Society sell various things, eg Christmas cards - by buying them and encouraging others to do the same, it raises funds and also awareness.
Great thank you, as I say every little bit helps it is a shame there is no support group here in Jersey but glad I have this site to help me.
Have you checked with the Society and on the facebook page about support groups or other sufferers in your area? You can make it known there that you would like to be contacted/are interested in contact with others - whether by phone, email, in person etc. Your details won't be published, but if they have details of others they will pass them on.
An aside, which we usually make new members aware of in case they haven't noticed - you can make your posts viewable only to members of this group by selecting that option before you post, otherwise anyone on the world wide web can read them and our discussions do tend to get personal, which some prefer to keep within the group.
How strange don't know what I would do with out my son great to hear that other members are in the same place as me thank you for coming back to me, it is hard for him as I used to be so sporty and able to now not knowing what each day is going to bring...
Sorry, your reply doesn't exactly make sense now I've deleted one of mine! I decided there were too many spelling mistakes and did it again and missed a bit out! I didn't know you would be right there at the other end answering straight away! Never mind, we know what we are talking about 
Hi there Smitten 500,
I think it would be excellent to have a special day to promote and raise awareness of Behçet's disease.
If BD is hidden in a group of other rare diseases then it can easily get lost in the crowd.
If BD has it's own identity attached to an annual awareness day then people have more of a focus on just one disease to raise awareness of - a disease that desperately needs I higher profile with doctors, the media and society as a whole.
There is an actual BD Awareness Day, possibly more than one, In fact, I think May is treated as International Behcet's Awareness month - I just can't remember at the mo.
Apart from this:
May 20th is International Behcet's Disease Awareness Day
Tsch tsch, that's what the link above says!
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