What help is available in Australia (Brisbane) for a Behcet sufferer?

[woodenberries]

I have joined not because I am a sufferer of Behects myself but my friend is and I want to know how I may help her and what is available for her. She is a mum and is so sick she can't possibly work but she needs to provide for herself and her children. Who is the best healthcare person to see who can help?????????

[lesleyg]

Hi Woodenberries

It is an extremely rare disease. I only know of three people through this website, and have heard of maybe another ten in Sydney. One doctor said statistically there are about 40 people in Australia but I think he was talking about the type of BD I have. I'll private message you.

Lesley

[Steamboat]

Hi wooden berries,

I am from Sydney like Lesley.

I would have thought you need a referral to a big teaching hospital (public). It would depend on what is your worst symptom. Mine was my eye so I started with an ophthalmologist and then moved quickly to a rheumatologist as well.

If your friend is unable to work she can apply for sickness benefits through centrelink. She can also apply for help around the home in the way of cooking, cleaning,shopping, help with showering and dressing. Usually the occupational therapist from the hospital is the best to help. She may need an apac assessment to access the help. This is what happens in Sydney and I imagine Brisbane would have a similar system but it does all depend on how sick you are.

Hope this helps but I saw Lesley was offering more. She has a lot of experience so will be of great value.

Good luck sorting things out.

Felicity

[lesleyg]

Hello again

Felicity has put you on the right track with all that is available.

Another thing you could do is sit with your friend and get her to become part of this group.

The emotional support given here is invaluable.

Cheers

Lesley

[fatihbozkirli]

Hulusi Behçet disease known as dokdor our country we have unfortunately very common, and I would be glad if you visit Behçet patient, and we will quote scientific articles

behcetturkey.com/