Committee
Gillian Eames
I am 55 years young and have had AS for over 20 years. Like many AS patients, my symptoms were misdiagnosed for years while the disease gradually progressed. Today, thanks to the continued care and support from my friends, family and rheumatologist I am able to maintain as good a quality of life as possible given the extent of my condition and disabilities.
I was lucky enough to be put forward for a five year clinical drug trial for an anti-TNF treatment while I was on a residential course at The Royal National Hospital for Rheumatic Diseases in Bath. However, once the trial ended my PCT refused to continue funding for the drug, which is when my battle for treatment began.
News coverage of my campaign put me in touch with AS suffers in similar situations that were looking for advise, support and help.
It became evident that there was a real need for a AS patient support network that would support people with the disease that need help and don’t know where else to turn. It is people with the disease themselves are best placed to speak about the impact of AS and raise awareness about the challenges faced by those with the disease everyday.
I was retired from work 10 years ago, and have accepted that I will be unable to work again. However, if people were properly diagnosed with AS earlier in their lives and had access to the best medication and support then it could enable them to stay in work and live full and active lives. CASP exists to ensure that the next generation of AS patients have the treatment options and opportunities that I never had. If you have AS or you know someone that would benefit from contacting other patients who could help them, please do get in touch.
Chairman
Gillian Eames
Daniel Lawton
I am from Brighton and have lived with AS for nearly 33 years. I was diagnosed by my GP at the age of 16, I was just in denial from what the GP had told me and thought "only old people get arthritis".
I was forced to give up my job as a stage manager at 28 because my condition meant I could not do the physical part of the job. My mum ( actress Dora Bryan) was told of the Royal National Hospital for Rheumatic Diseases in Bath by a nurse that had heard her on the local Bath radio. The treatment I received over the past 20 years from this hospital has made me physically and mentally stronger to cope with A.S. In 2004 I had spinal surgery to correct my posture which was a total success and has made my condition easier to live with.
After my operation I requested to go back to the hospital in Bath to recover and was refused funding by Brighton PCT and there after all other treatment from that point on.. I asked my G.P on numerous occasion's to be referred back to Bath but the Brighton PCT refused each time. This is not just only me, I know other A.S. patients in Brighton have also been refused funding.
I think the setting up of CASP by patients to give support to each other is very important.
Vice Chairman
Daniel Lawton
Anthony Deaves
I am joint treasurer of CASP. I was diagnosed with AS 18 years ago although with hindsight I had it for many years before that. My father also had the disease. I founded a NASS support group at Hinchingbrooke Hospital some 17 years ago. Unfortunately we have recently been advised that the PCT/hospital no longer wants us there so we are seeking alternative venues and professional support.
I originally trained as a stonemason and I have worked on many historic buildings. In my early years I was an active trade union representative and ended up being a regional shop steward for Ancient Monuments and PSA. I have supported several voluntary groups and charities over the years and look forward to helping CASP in its aim to provide information and support for as many people as possible.
Joint Treasurer
Anthony Deaves
Alison Deaves
I am joint treasurer of CASP. I work full time as a medical secretary at Addenbrookes Hospital in Cambridge. Although I do not suffer from AS myself, I have been married to Tony for 25 years and have seen first hand the effects it can have. I try to support him in as many ways as possible and one of those is in my position at CASP.
I like to give something back to my community and I am an assistant guider at the Brownie unit in our village. We have two lovely daughters, Charlotte aged 20 who is in her final year at York University studying psychology and Hannah who is 18 who is not quite certain where her life is taking her yet but is a supporter of CASP.
Joint Treasurer
Alison Deaves
Lee Shuck
I am a 33 year old Ankylosing Spondylitis patient from Birmingham. I have had AS since my mid to late teens so has had a dramatic effect on my life, although I'm determined not to let it effect me adversely; however I have had times I've felt like throwing my balls against the wall and giving up.
Being part of CASP has put me in contact with fellow AS patients in a more social platform where we can talk about our condition it has given me some perspective into what we go through day to day. My interests range from Chess to finding hidden boxes in the woods, also known as geocaching.
My family is my motivation and strength I have a supportive wife and a young daughter, this terrible condition not only effects the patient it effects those you hold dear as well, although its not all doom and gloom theres a lot of life out there to live.
Secretary
Lee Shuck
