Psoriasis Awareness Week 2015 focused on helping people with psoriasis to be aware of psoriatic arthritis (PsA). It saw the launch of a campaign called 'Ps.Arthritis', which was specifically aimed at raising awareness of psoriatic arthritis. The campaign was a product of the 'See Psoriasis: Look Deeper' collaboration of which we are a part.
Alongside the 'Ps.Arthritis' campaign, we also shared some individual accounts of young people living with psoriatic arthritis. You can read these unique accounts by clicking on the links below.
Pamela's story, Hannah's story
Ps.Arthritis is a campaign from the See Psoriasis: Look Deeper collaboration aimed at helping people with psoriasis learn more about psoriatic arthritis (PsA).
Visit the campaign web page to check out our animation, graphics and videos for all you need to know about PsA. If you’re already living with psoriasis or PsA, there are some top tips to help you to protect your joints.
World and Paralympic Rowing Champion, Pamela Relph MBE tells us about her experiences as an athlete living with psoriatic arthritis...
I have suffered from psoriatic arthritis since the age of 7, but already a sporty and active child, I was never going to let my condition slow me down. Growing up I had to overcome weekly medical appointments, injections, different medications all alongside the usual symptoms such as fatigue, chronic pain and stiff joints to name a few. Now these are just as normal to me as making a cup of coffee in the morning and they form a very mundane but necessary part of my life.
Since 2011, I have been a rower on the GB Rowing Team. Having suffered with psoriatic arthritis from such an early age, I have been left with my right wrist fused and limited function in my right hand. This disablement means that I classify for Paralympic Rowing in the LTA4 category, rowing amongst athletes with similar minimal disabilities like mine such as fused ankles and visual impairments.
A lot of people may think that a condition like psoriatic arthritis doesn't really lend itself to a career as a full time athlete. It hurts to move my joints and I am tired all the time - so how do I manage to exercise for upwards of 4 hours a day? Anyone taking immunosuppressant medication will know that this medication works by limiting your body's ability to attack itself by dampening down your immune system. What people might not know is that exercising a lot has a similar effect: that is why athletes are very susceptible to illness. So I have a medication regime that is targeting my disease from the inside and my training regime adds to this.
I see myself as one of the lucky ones as the psoriatic element of my condition is something that only becomes problematic during flare ups. When I do have a flare up, my arthritis will stop me in my tracks. It becomes impossible to train and the only thing I can do is rest and recover and wait for the storm to pass. When in a flare I spend a lot of time sleeping and can easily sleep for 12-13 hours a night as opposed to my usual 9 hours.
Before I started rowing the idea of being a full time athlete scared me. I was in a very bad place with my condition and the idea of exercising 2 or 3 times a day, every day, seemed impossible. However the truth is that my condition has never been better and with Rio 2016 Paralympic Games just 11 months away, I am training harder than I ever have before. I still have the pain and fatigue and sometimes a flare but the good days are so much better than before. I am healthy and when my condition allows it I am able to do really incredible things with my body.
Hannah Parkin shares her journey: from being diagnosed with psoriasis to living with psoriatic arthritis...
I was diagnosed with psoriasis when I was teenager, about 15. The dry red patches popped up all over my body, within a year I had large areas of active plaque psoriasis on my arms, legs and body. As a teenager this was quite distressing. I often wore long sleeved, long legged clothing to cover up the affected areas. When it developed into my scalp, I wore hats a lot but it didn’t stop the fall out of skin from my hair and people often thought I just had really bad dandruff.
I wasn’t very confident as a teenager and didn’t really want to get to know too many people as they would comment on the condition of my skin. As I got older I got used to the problems. I did my own research to understand what the problem was so I could explain, and used creams when needed during a flare up. I coped rather well for years like this.
When I was 25 I developed painful joints. I work as a radiographer which involves a lot of long shifts on my feet and using heavy equipment. Within 3 months of the first pain I couldn’t put my foot on the floor without being in agony. I was referred after 6 months of this to a rheumatologist who diagnosed active psoriatic arthritis in several joints and I was immediately put on medication.
The medication was awful. I felt sick a lot (something I personally have a phobia of), I was exhausted a lot of the time and due to pain I was unable to do the things I had enjoyed, like horse riding. It was a struggle to just go to work and I would come home afterwards just to crash out on the sofa. My relationship with my partner suffered as we had always been active. Now I was unable to do anything outside of work I became jealous and envious that he could. Eventually we split, I lost the house I had bought with him and had to start again.
I don’t believe I was given the support required emotionally to deal with the news that I had a life changing disease, and the effect of medications on my body. I recently went back to the specialist and I currently don’t have active disease which is great. I am trying to re-build my life slowly but it’s always in the back of my mind that the arthritis could flare again. I feel a bit like a ticking time bomb at times.