Support Group in Australia

Support Group in Australia

Hi my name is Sue and I have been diagnosed with Behcets since 1986. I was 16 years old. I have not had an easy journey, however to many my life has appeared very normal. I went to university and studied nursing straight out of school and continue to work. I also have studied counselling and psychology. My Behcets has been complicated and I have suffered most symptoms over the years.mi would like to get a real support network set up for sufferers in Australia , as it is a very isolating and painful disease. I have never met another sufferer of Behcets and hope to reach out and set up a network where none of us feel alone.

I am an incredibly positive person and although chronic illness brings darkness to your life I refuse to let it define me or break me. I hope to bring comfort to others and help if needed as no one needs to suffer as I have. Remembering in the 80s and 90s not much was known about this very pretty named exotic disease. Please feel free to contact me just to say hello, to offer help in trying to set up a formal support group or to ask for any help, as being apart of the health care system I may be able to direct you in an appropriate way.

Have a great day and please say hello.

Sue

3 Replies

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  • Hi Sue

    Thank you for sharing your post and I think a network support group in Australia for sufferers with Behcets is a great idea. I am waiting on a diagnosis from my rheumatologist who thinks I may have the disease. I had the pin prick test and even though no more red spots showed up around the area there was some slight bruising and redness. I have written a post titled maybe behcets - someone maybe able to shed some light. Its been almost 9 months since I had the first obvious pain but still remain a medical mystery.

    Bee

  • I think there is an Australian based group on Facebook.. behcets warriors I think they are called... i think we definitely need a support group/ recognised org in Australia...I havr community development and networking skills..so would be happy to help out and work with others on developing something...

  • Love to do the same thing only locally in our small NZ city. My 16 year old daughter has had BD since she was 13- I believe it all started post HPV vaccination She now had depression & anorexia as a consequence It is so isolating for her as none of her peers understand Being a teenager is hard enough as it is. I wish you well

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