About Vasculitis UK
- Common Experiences with Vasculitis
- Health, Medical and Caring Information
- Vasculitis in Children
- NHS Patient Choices
- Personal Stories
- Government Benefits
- Health Services and other Organisational Support
- Studying with Vasculitis
- Workplace issues
- Vasculitis in the Media
- Podcasts and Videos
Ruth's TA story
My name is Ruth Stanton and I have Takayasus Arteritis.
Ten years ago I had a few mini strokes but the doctors finding nothing wrong with me decided I was too young to have a stroke. I was married with two children who were aged one and five and a fit horsewoman who evented. Then my whole world crashed. I had a major stroke which ended up with me having, amongst other problems, aphasia and dysphasia. The doctors were unable to understand how this happened. The consultants even phoned my mother asking was I in good health as a child. Did I suffer from bruising easily and more questions.
After many tests, including MRI and a PET scans, I was found to have Takayasus Arteritis, which caused the carotid artery to inflame and block. I was put on steroids, had chemotherapy and given lots of other drugs until they found the right cocktail to keep the disease under control.
Few had ever heard of Takayasus arteritis then. My husband was put in touch with the person that we were told was the only expert in T.A. - a professor - but it really wasn't very helpful. When I came out of hospital everything was difficult. Trying to get a speech therapist, finding a good babyminder, even help for me at home. There was no help there for me. Thank you Stroke Association, Home Start and the lovely babyminder we managed to find after much searching.
My mother then saw the Stuart Strange Trust on line. Over the next few years the Trust became Vasculitis UK . At last my mother had found someone to 'talk' to. Susan and John Mills are two special people.
My husband changed jobs to the South Coast from the Midlands. A hard time for me at first but am now happy we moved. Here I have the most amazing consultant in Dr Menon who understands and helps me. Even though I'm only meant to I see him once every six months he will see me at a minutes notice if needed. I don't know what I would do without him.
This is what stroke has left me with. Thanks TA !
People don't understand what it is like being unable to get the right words out when they speak to you and how tired your brain gets just trying. Also reading and writing is impossible. You do feel lonely and isolated. It has been very difficult to make friends although I do have two special ones. My children are my life and they have grown up beautifully. They need an award for putting up with me, helping me and understanding me. My husband, who I love dearly and helps me a lot, is always working to pay all the bills so I find myself on my own a lot. But I'm still here.
(Written for me by Rosemary Francis)