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 the individual accounts of a number of people who are living with psoriatic arthritis. You can read each of these unique accounts by clicking on the links below.
Pamela's story, Lydia's story, Andy's story, Hannah's story, Katy'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.
Lydia Warner recounts her 26 year battle with psoriasis and psoriatic arthritis...
I am a middle aged, well upholstered wife/shepherdess, and mother to 2 truculent teenagers. It is fair to say that over the past 26 years I have had more than a ‘skin full’ of psoriasis in all its guises, and consequently have worked through most available treatments and wandered down alternative routes as well.
When I was 26, energetic, largely optimistic and a successful archaeologist, the sudden onset of aches and pains, hot swollen joints and fatigue were diagnosed in the first instance as gout (although no port was consumed). A fractured ankle came into it, subsequently a virus and, after a six week hospital stay, psoriatic arthritis - that’s what four years in damp holes does for you! I was devastated by the rash pronouncement that I would never walk again, a statement proved wrong but successful in scuppering the intended career path and general employability. Psoriasis erupted and battle commenced.
For 17 years I seethed as it dominated all aspects of our lives. My thirties seemed to pass me by, and my condition was perceived to be the essence of me. I was locked in a well acknowledged cycle of psoriasis and anxiety. Activity became merely functional as I tried to minimise discomfort but exacerbated stiffness. I ricocheted between rheumatologist and dermatologist - never twain shall meet! - overwhelmed by the disabling effects of psoriatic arthritis and the emotional impact of living with the condition. Crushed and desperate, I signed up to trial a biologic that brought my condition under control. I have been on several since, their effectiveness being variable with time and symptoms. My psoriasis is not cured but manageable. It reminds me of its presence at the least convenient times.
In the early days I felt very isolated and found the Psoriasis Association to be a true port in the storm. When I realised that I could make a valued constructive contribution through my experiences, a new and positive perspective opened up. Doing something proactive has been quite cathartic and fun, and I realise that I am made of sterner stuff than I perhaps give myself credit for. I have been at rock bottom but things always got better!
I am blessed with a wonderfully supportive NHS team, family and husband - there for me ‘in sickness and in health’ - it has not always been so. I clutch at the straw of scientific progress and the developments in care practice have been phenomenal. There is much more of a focus on the emotional side these days which is great as this in itself is so destructive.
Andy Seymour talks about the different things he does to help manage his psoriatic arthritis...
I have had psoriasis all my life and was hospitalised with this in my teens. My arthritis didn't start until I was about 25, when it affected my thumbs. I was diagnosed with psoriatic arthritis, and at the time I didn't know anything about the condition. I was asked if I wanted steroid injections in my thumbs but I declined as I felt I could manage the condition more holistically.
For a while nothing much changed. I was working hard, setting up my own design business and eating badly. About 2 years later the arthritis worsened, affecting the whole of my body. At one point my jaw came out of its socket and I had to go to hospital (strangely this didn't hurt, but it was very scary as you can imagine). At this point I could barely walk because of the pain. It was a very worrying time and at 27 I thought I was going to be crippled for the rest of my life.
I was given strong pain killers to try to manage the pain, but I was getting desperate so I started attending a clinic in London which specialised in psoriasis and other skin conditions, rather than psoriatic arthritis. These visits didn't help my psoriasis, but my arthritis started to get better. At the time I put it down to the medicine they prescribed, but now I am not so sure. I had started to make a lot of changes to my diet and was drinking a water I had read helped with arthritis (Deeside mineral water). Many years later I am still OK(ish). I don't go to the clinic anymore but continue to be very careful with my diet.
Having psoriatic arthritis has knocked my self confidence, and I have always been a worrier and suffered from anxiety. I now try to look after my whole well being rather than focus on illnesses and ailments. As well as continuing to drink the water, I take a number of supplements including black seed oil, fish oil, and glucosamine. I walk regularly and have recently started meditation. I've noticed processed meat and alcohol make my arthritis worse, so I mostly avoid these, and that milk makes my psoriasis worse, so I have cut this out completely.
As I mentioned, 23 years ago I thought I would be crippled, but now I'm now approaching 50 and have managed to stay mobile and active. I can do most things apart from vigorous exercise and have to be careful to pace myself. I have got gradually better and put this down to looking after myself, mostly through my diet rather than the medical treatments. It can be hard work sometimes, trying to always eat healthily, but I have to, to keep well.
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.
Katy Clarke talks about her approach to dealing with and managing psoriatic arthritis...
Psoriatic arthritis is a pain in the... well, pretty much a pain everywhere for me! It affects my jaw, neck, shoulders, elbows, wrists, hands, lower back, knees, ankles and toes. For many it is not so global, maybe the odd joint or a few joints. I just got a shorter straw. I cannot work and haven't been able to for some time. It affects most of my joints and also tendons, ligaments etc. It can make me very tired too.
I used to LOVE dancing and walking fast and frequently. I was gutted when it impacted so much I had to let go of some of the things I thrived on. The secret is to find other things that may help; to do other things if possible; to focus on the 'yeses' and not the 'nos’. It is about acceptance, common sense and taking charge of myself.
I am (just newly!!) sixty. PsA was diagnosed when I was 30 (I had developed psoriasis at 16) by a very astute GP. It can be hard to get a proper diagnosis. I also had fantastic consultants. Some patients are not so fortunate. It is about us being informed, positive, pro-active and if necessary discussing it with our GP and consultants. After all, it not only helps us, it will help those following us. Nowadays, treatment is far better... as is information, education and... well, determination!
Joining The Psoriasis Association was a major thing in my life. I have been an enthusiastic member for decades. It helps to know information is there and a group of dedicated people can help us to help ourselves. We can LIVE with PsA (emphasis on 'live') and not live with PsA... in other words, we remain conscious of what helps and what may cause a flare up or problems, but know ourselves well enough to take charge and do what is possible. PsA: here is to spreading the word and making a difference. So happy that we have a chance to put it in the spotlight.