I am seeking help from vasculitis patients. I have one of the types vasculitis, Wegener’s Granulomatosis and I am working towards my PhD. As part of this I am writing a Vasculitis Patient Information booklet. In order to do this, I need to know about and understand the problems and experiences of people suffering from vasculitis.
I need a mixture of genders, ages and most importantly different vasculitis diseases:-
Behcet’s disease, Buerger’s disease, Central Nervous System, Churg Strauss syndrome, Cryoglobulinemia, Giant Cell Arteritis, Henoch-Schönlein Purpura, Hypersensitivity vasculitis, Kawasaki disease, Microscopic polyangiitis, Polyarteritis nodosa, Polymyalgia rheumatica, Rheumatoid vasculitis, Takayasu’s arteritis, and Wegener’s Granulomatosis (GPA) - as well as other vasculities illness
I would like you to put yourself in the shoes of someone who has just visited the hospital and been newly diagnosed with your type of vasculitis. Knowing what you know now about your illness, what information do you think is important to know and be aware of.
I would also like to hear from patients who would be willing to tell the story of their illness. (Carers and families can also add something that would give another perspective) Points that need to be covered are:-
1)How long you had the disease before it was diagnosed and what were the symptoms
2)How it has affected you.
3)If you worked before your illness, how were you affected and what happened. Did you return to work full time, or part time or were you medically retired?
Have you taken up new hobbies/joined social groups/fund raising because of disease
How do you feel now? It’s your personal story and everyone will be different
This is to be no more than an A4 sheet
In the first instance please contact John Mills who will pass on your details to me.