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Vikki’s story – why Therapies Matter

Vikki Knowles explains why the RNHRD and Therapies Centre means so much to her…

” In 2014 following a routine operation I developed severe pain and stiffness in my neck, shoulders and pelvis. This progressed quite rapidly and I became severely incapacitated with my husband having to help me wash, dress and manage everyday activities. I did manage to keep working in a limited capacity but the pain and stiffness was very difficult to manage at work. Getting in and out of my car was especially difficult and as a community specialist nurse this was possibly the worst aspect.

“I was referred to a Rheumatologist who diagnosed me with Polymyalgia Rheumatica (PMR). I was started on oral steroids and told that this would sort out all my problems. However, I wasn’t comfortable with the diagnosis as the symptoms seemed more extensive that those seen with PMR as the pain and stiffness continued to cause problems. I also experienced severe fatigue and interrupted sleep pattern.

“My GP who had been supportive referred me for a second opinion. Dr Chander, the second consultant I saw was extremely thorough and agreed that this did not look like PMR. Following extensive investigations and I was diagnosed with non-radiologic axial spondylitis.

“It was at this point I joined the National Ankylosing Spondylitis Society (NASS) and heard about the Ankylosing Spondylitis (AS) course being run at the Royal National Hospital for Rheumatic Diseases (RNHRD).

“In April 2017, I started the two week AS course. It was a revelation, the staff are amazing. I was lucky to be with a great group and we have forged a really close supportive network, which has helped keep us all motivated. Following the course I have gained pretty much full mobility and can now do all the things I was unable to do prior to attending including getting in and out of my car.

“The educational component of the AS course is also of great value as even though I am a nurse I learned so much more about living with the condition. It equips you with the tools to maintain a healthy lifestyle and keep you moving but it depends on the individual continuing to practice what they have learnt. I have started yoga and Tai Chi as recommended and do my exercises regularly so that on my six month post course review my scores had continued to improve. I would never have achieved this had I not been lucky enough to have access to the group as there is no local AS services where I live.

“Attending the AS course has truly changed my life and I feel so grateful to have had such excellent support from the wonderful staff at the RNHRD.”

If you’d like make a donation towards the new RNHRD and Therapies Centre, you can make it via our website (click here) or through JustGiving.com

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