Chicago Vasculitis Symposium?

I have just read the Chicago Vasculitis Symposium sent from Ayla (Thank you).

It was very interesting and confirms what I have learnt from this site but I cannot agree with the permanent nerve damage bit. I found it not very reassuring to people just starting out. Although it may be permanent in one way, it can improve.

From my own experience two years into the disease there has been a lot of improvement.

At first I had lost the use of my left hand and both feet.

I probably will not get back to pre-vasculitis but I no longer have to hold on to my husband (only out of choice!). I am still occasionally like a Weeble (remember Weebles wobble but they don't fall down) but I do not limp or drag my foot now and my hand is still improving. I still take paracetamol and occasionally Tramadol but not as much. I think the physio helped a great deal as she said I should strengthen the muscles around the nerves which makes sense and not to use a stick as it was in both feet and would make me lop-sided. Walking helps.

All in all it is livable with now.

The synopsis however did re-assure me that I have had the right treatment and that the questions I have now no one has the answers to yet.

Which highlights how much research needs to be done.

I was surprised at the shortage of doctors specialising. Why is that? Is it because it it is rare?

Or that they are not aware?

May (the awareness month) is going to be very important.

What did anyone else think that read it?

2 Replies

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  • I agree with the shortage of doctors in Chicagoland area. Wondering where and who you have found that specializes in vasculitis?

  • I am in West Yorkshire. So my consultant is at my local NHS Hospital. I have found though that unless they specialise doctors have not yet heard of Vasculitis. Hopefully the Routemap (have you downloaded it yet?) and the awareness month here will go a long way to help with this.

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