The people you will help...

Esther's Story

I was diagnosed with RA when I was 15 after falling on my knee. Over the next four years it infiltrated my whole body. I went from being an energetic, athletic teenager to an insular, over sensitive girl, prone to depression. I was constantly tired from the pain and found it hard to concentrate.

Over the years I have been on a number of different drugs, had my first knee replacement at the age of 21 and have since had a hip replacement and had to have surgery to my feet and am told that I will now also need a further knee replacement.

It took me about 10 years to come to terms with having RA and to begin to take control back and turn things around. I tried to work, having gone through a succession of jobs, but have not been able to keep them for any length of time before being forced to give them up and spend weeks in hospital recovering. I decided to turn my attention to studying and with the help of a very accommodating principal who agreed to relax some of the rules and let me study part time, I got my BA in 6 years - a tremendous sense of accomplishment for me.

The last 5 years have been by far the best, due to my treatment with new drugs and learning new ways to cope with daily effect of living with this disease. I heard about NRAS from my rheumatology nurse specialist and have now become both a member and volunteer. Joining NRAS has opened a new range of opportunities that I would otherwise not have had. It has given me a sense of purpose and accomplishment that had been sadly lacking in my life. In addition to knowing I am helping others with RA, there is also the reassurance that the team are there for me if I need help.

Roger's Story

I am an HGV driver and in early April 2008 I was working on an old Mercedes I had bought. Afterwards I thought I had pulled a muscle in my shoulder but a couple of my fingers were aching as well. For a couple of weeks I went on pretending it was muscle strain or something similar, but it wasn't getting any better so I went to see my GP. His first thought was RA but said he would need to do blood tests to confirm the diagnosis.

I realised I knew nothing about RA and my internet search scared me to death. My initial blood tests were inconclusive so more tests followed. While I was waiting for the results my condition worsened, which was a very dark time for me and my family. I was referred to a specialist, but had to wait 3 months before I could see one, during which time I began to experience indescribable pain. I couldn't sit for more than a couple of hours, couldn't stand or walk far, getting out of the car or bath became really difficult as I couldn't pull myself up with my arms - even eating a burger was painful as my jaw ached. There wasn't a joint in my body that didn't hurt.

Eventually I got my hospital appointment, RA was confirmed and I was prescribed drugs to help. Things are getting easier, although I still get episodes when the pain gets worse. The worst thing is the fatigue and even after 8 or 9 hours sleep I still feel tired, I am shattered at the end of the day and the pain gets worse as the day goes on. My wife and family have been fantastic helping me through coming to terms with having RA and I thank my blessings that I am managing to have a reasonably normal life at home and work.

Donna's Story

I first became affected by RA in February 2009, 9 months after having my first child. Becoming a mum in 2008 was the best thing that ever happened to me and to develop RA so soon after has been hard to deal with. I have since learnt that pregnancy can be a trigger factor in developing RA. My symptoms appeared almost overnight. I began to experience aches and stiffness all over my body in the mornings and evenings - it felt like I had been excessively exercising when I hadn't at all. I'm 38 and overnight I began feeling like a 90 year old. It took several months before I was referred to a rheumatologist, during which time I couldn't lie down comfortably in bed, lift my daughter from her cot or cuddle her in the mornings without pain.

I was diagnosed with early onset RA. Like many people I had a preconceived idea of what RA was - a condition that deteriorates joints and comes on in old age. I now know how wrong I was and from experience know how debilitating it is and that it affects not just your joints but your appetite and energy levels. It's still early days for me but now I have started on medication I can see encouraging signs that the inflammation is slowly improving. For me, the most difficult thing to cope with is the exhaustion. It has an impact on all aspects of your life - it's difficult to manage tasks like cleaning, cooking, shopping and caring for a young child when you have no energy at all. After a period of time this begins to wear you down. I have had to adjust my life considerably and accept there are limitations in what I can do. Some days just to get washed, dressed and feed us both will be all that I can manage.

I felt very alone and worried for the future when I first had my diagnosis. Sadly my rheumatology nurse is only available to answer questions by phone on two mornings a week, friends and family don't fully understand the condition either and this adds to the isolation and depression that you feel when you  are coming to terms with any lifelong condition. Joining NRAS has been my lifeline. The free information pack they provide has made me more aware of my condition and I feel more in control. Just knowing you are not the only one who has been through it can take away some of the strain. The volunteer network means that you can talk to someone on the phone at any time.

I have learnt that everyone's journey with RA will be different but I am relieved that I now know what I have and from here on things will begin to get better. I now look forward to a better quality of life and enjoying my baby as every new mum should be.


Your gift means that we can support people like Esther, Roger and Donna both today, and in the future. Thank you.