Facebook Group for People with Behcet's - Living in Australia & New Zealand.

[River-Gray-67]

I'm 47 female and I was diagnosed 15 years ago with BD in Australia.

As a child I suffered from severe headaches, tummy pains and aches and pains in my muscles and joints. I loved to swim as a child but was unable to run without pain in my hips and lower back. I stretch regularly but am always tight. I also have all the ulcers and skin problems that come with this disease. Ive had different illness's that cant be explained but now realise that they are part of the BD. My oesophagus became severely inflamed about 5 years ago and I lost my voice for about 4 months. The drs could not find a reason for my illness and as a result my vocal cords have been damaged and I now have a slightly croaky voice. I have also had problems with my bladder over the years. For the past 2 years I have been on nerve blockers for the headaches and acid blockers for the internal bleeding. I just want to mention that I do have an extremely healthy diet. I hear there is a link to food and behcet's so if anyone has this link I would appreciate it.

I know Behcet's Syndrome is a rare condition, especially in Australia and New Zealand. I have never met another Behcet's sufferer and am keen to know how many of us are living in this

part of the world so I have created a Facebook page (closed group).

My aim is for us to come together and help support one another in our part of the world.

Here is the name of the group on fb. Behcet's - Australia & New Zealand

Regards

[crohnie2000]

Hello

I'm a fellow BD sufferer in Australia Australia. I am already a member of the closed Facebook group called Behcet's disease warriors Australia

Please feel free to request to join this group. I will search for your Facebook group and join that also.

Where in Australia are you located? I'm in the ACT.

[deus777 in reply to crohnie2000]

HI I am in Sydney, how do I join your group?

[River-Gray-67 in reply to deus777]

In the facebook search bar put Behcet's - Australia New Zealand I couldnt find a fb page for Australia so I started one. Im English but was raised in NZ until I emigrated to Australis a few years ago.

[River-Gray-67 in reply to deus777]

Try this link facebook.com/groups/1410515...

[Stablest in reply to crohnie2000]

Hi there I'm on the Gold Coast and there is also FB page Aussues with Behcets. It has 18 members. I'll look for these others and join. Statistically I thinkbi worked out there should be more than 200 of is!

[River-Gray-67 in reply to Stablest]

Hi, I was living on the Gold Coast 15 years ago when I was diagnosed. I now live in WA. Im from the UK but I was raised in NZ. There arent many BD sufferers that I know of in NZ, maybe 10, so I started a page to join us. Here is the link to my page and I will also look up the Aussie page. Thank you! facebook.com/groups/1410515...

[River-Gray-67 in reply to crohnie2000]

Hi

Im in WA but I was diagnosed while living in the Gold Coast. Thank you for your reply!

[Kiwichris]

Hi. I have been recently diagnosed with suspected Bechets syndrome. I live in Auckland , NZ - is this Facebook group still active and how can I join.

[River-Gray-67 in reply to Kiwichris]

Yes it is active