Frustration

[cwetter]

Lately I have been so frustrated. There are all of these camps for kids who have diabetes or cancer but none for people who have vascultits. It is like nobody knows what it is. Our disease id life threatening too why don't we get the support and security we need. EVERY illness should have a camp or something to help kids deal with it.

[drz]

There are not as many of us with same level of problems from our disease. Even people with diabetes are quite diverse but they are also more numerous. If we lump all auto immune disorders together we are a very large number but an incredibly diverse group who may have few things in common. I have gone to support groups or classes for people living with a chronic illness and found those of some help since we often share many issues having a disease that is incurable and with us for rest of our lives. In some large cities there are Weg support groups but most of us are not lucky enough to have one nearby. We do have a great support forum here though which many others would envy.

[Wegetarian]

We do have support groups for rare diseases through the Rheumy union, I head many vasculites join and Wegs are the most common vasculites so there should always be a few attending. There are also these courses for people with vasculites, but these are for adults. I'm not sure if you were thinking of groups for kids? I guess vasculites are so rare for children that they would be really hard to organize since there can't be that many patients. Like drz said a lot of different diseases would have to be lumped together. I think a better idea would be to have some kind of individual course, then it wouldn't even be that much of an issue if there would be say 10 kids with different illnesses as long as they take into consideration everyones illness.

For adutls, I think the Rheumy union here had a two-week course for vasculites, it was limited to something like 10 people last year and didn't fill it up (not too easy to apply though). I applied for this years course, and hope I get accepted. In addition the Rheumy union is organising a one weekend meeting where some local "guru" doctor is attending, should be very interesting. I think there is no difficult application process for that, so I'll go unless I get some force majeure reason that prevents me.