How to get in touch
The following are stories of people who are or have supported PAPAA via an activity or event in the past. We salute them all and are extremely grateful for their time, support and generosity.
If you have an idea, want to raise funds or just make a donation, the best way is to set up your own page on our JustGiving page
Janine's Himalayan trek story: March 2020
I am Trekking in the Himalaya's to raise money for PAPAA because we need to find a cure for psoriatic arthritis.
As many of you may know, my brother Matt has been plagued with the debilitating disease called psoriatic arthritis (PsA) for around 20 years. Matt had several doctors over about 4 years review his case before he was eventually diagnosed with the disease in his early 20s.
Seeing someone you love go through so much pain on a daily basis is hard to endure.
Unlike osteoarthritis, which generally affects the elderly, rheumatoid arthritis (the most widely known autoimmune inflammatory arthritis) and PsA can affect any person of any age. PsA is an autoimmune disease, that affects not only the joints (causing them to swell and seize up, resulting in considerable pain), but also affecting concentration, regular mouth ulcers and a generally weakened immune system. It was this weakened immune system that resulted in Matt being placed in a coma for 5 days due to complications from pneumonia in 2017.
At present, there is no cure for PsA and the treatments can often be equal to or more painful than the condition itself. With greater research, hopefully a cure can be found or at the very least a more effective treatment for the symptoms, this is where PAPAA comes in! PAPAA's research will hopefully lead to a better life for those diagnosed with this condition.
So to support PAPAA and their ongoing research I am trekking through the Himalaya's with some friends in March 2020, to raise money for their worthwhile cause. During the trek I will be:
- trekking an average of 15 km to 20 km per day through unique remote areas
- going to high altitude, and reaching a maximum altitude of 3000 meters above sea level
- and probably the most difficult one for me... staying in lodges with basic facilities or camping
To support Janine visit her JustGiving page
The John Muir 50km ultra - 30th March 2019
Stirling Marathon - 28th April 2019
Heather is taking on two challenges, the John Muir 50km ultra and the Stirling Marathon.
"I'm running 50km trail run (30miles) in March and Stirling marathon in April. For my Dad's 30th anniversary, so choosing to run in his memory and hopefully raise some money for PAPAA and awareness of this condition that my Dad suffered from.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity."
To support Heather visit her JustGiving page
Tom Sullivan The ITU Sprint Triathlon Leeds
9th &-10th June 2018
Tom is competing in the ITU Sprint Triathlon Leeds for PAPAA.
"This June I am challenging myself to compete in the ITU Sprint Triathlon in Leeds to raise awareness around the complex illness of psoriatic arthritis. I will be aiming to raise £500 for PAPAA..."
Why is Tom doing this?
"Around four years ago after months of severe pain and virus' my mum was diagnosed with the disease psoriatic arthritis. This disease causes swelling around the joints within the body which over time causes damage and deformation. Although the disease in itself is horrific the doctors informed us that the treatment and medication for it can be much harsher. My mum was prescribed a cocktail of different medications in order to battle against the number of issues she faced, she was prescribed a medication called methotrexate (a chemotherapy agent and immune system suppressant) which caused her to have multiple seizures a day to a reaction within the body. Further down the line, the doctor tried to swap this drug for a similar type of medication called sulfasalasine, but unfortunately, the seizures remained a daily struggle and still to this day, there has been no way forward on how to control the severity of them. These treatments also cause hair loss, finger nails and even the occasional loss and cracking of skin on the body. I've done my fair share of 'Googling' cures, remedies and any treatments possible out there and the only thing I ever seem to come across that could potentially work is the use of Stem Cell Treatments over in the USA costing way into the tens of thousands of pounds which is unfortunately not a viable option. By raising this money for PAPAA, I'm not expecting to solve or in anyway cure my mum or anyone in a similar situation, but hopefully we can play a part in helping the professionals and those who put their sole effort into researching issues regarding this illness. I will be competing in the ITU Spring Triathlon race Sunday 9th June, so hopefully I've achieved my target goal by then. Thank you for your time!"
To support Tom visit his JustGiving page
Robie Parton Cardiff Half Marathon
1st October 2017
I am running the Cardiff Half Marathon for PAPAA because I suffer from both psoriasis & psoriatic arthritis
The first event took place back in 2003 and the 10th Anniversary was celebrated in 2012. The event is not only the UK’s second largest half marathon, it is Wales’ largest road race and Wales’ largest multi-charity fundraising event.
To support Robie visit his JustGiving page
Clare Phillips is taking part in the 100km London to Brighton challenge, which is part of the Ultra Challenge Series. Claire is raising money for PAPAA in memory of her late mum Moira Bignell.
Clare has said
“…it is a fair trek and training has started well, which is good, I'm feeling fit and in a good place. Any donation I receive is amazing and no donation too small. I'm walking for mum and all psoriasis sufferers, hoping to raise awareness and give my support to a very worthy charity. Support in donations is amazing, but a cheer or a word of encouragement on my journey is also very much appreciated. Lots of love and thanks to all xxx..”
To support Clare visit her JustGiving page
Jo Chapman East Grinstead Triathlon
14 May 2017
"I felt it was time to try and bring some awareness of a disease I knew nothing about until my significant other half (!) was diagnosed with it in August 2016. Psoriatic arthritis is an auto immune inflammatory disease. It can cause swelling, stiffness and pain in and around the joints, cause nail changes and overall fatigue. Studies show that delaying treatment for psoriatic arthritis as little as six months can result in permanent joint damage. Early recognition, diagnosis and treatment of psoriatic arthritis are critical to relieve pain and inflammation and help prevent joint damage. So I am telling Paul’s story in the hope of raising awareness. But also because I wanted to let those around us know exactly what Paul has been going through and how amazing he has been at coping with this and not just coping, but being positive in what is a very uncertain time."
To support Jo visit her JustGiving page
Howard Jennings - A grand day out - July 2016
Howard Jennings getting a soaking in aid of psoriasis and psoriatic arthritis
At the beginning of July, Yorkshire Dales Centre of The Caravan Club (www.ydcc.co.uk)
held a rally in Ripon, with all the proceeds from the event in aid of PAPAA.
The chairman of YDCC, Howard Jennings said:
“...my daughter Suzie who is 33 years old was diagnosed with psoriatic arthritis early last year and because of this, I pledged to her that I would raise funds for PAPAA.”
“...we had forty caravans attending. Throughout Saturday we had fun and games, live music, food, tombola, auction and a raffle to raise funds...”
Total raised for PAPAA was £1,435, which is the largest amount ever raised by a chairman in the forty year history of the centre.
PAPAA would like to thank Howard, his wife Margaret, their daughter Suzie and all the members of the club who attended the rally, for their generous support.
Ben Smithson London Marathon 24th April 2016
"I guess the first question I have to ask myself is why I wanted to embark on this crazy endurance race? The simple answer is that I wanted to prove to people that no matter how hard things get when you put your mind to something it is achievable. I have suffered with Psoriasis all my life and contracted psoriatic arthritis when I was 17. At times it has been extremely hard to deal with. Having to deal with the Psoriasis is fine but it is more the fatigue and energy levels that you have to overcome and manage as best as possible.
Starting this challenge was a great commitment as running a marathon takes an awful lot of dedication and time but something that I personally wanted to achieve to not let this disease get in the way of my life. I have been extremely fortunate that the medication I take has been extremely successful in reducing and eliminating the psoriasis and psoriatic arthritis.
Coming into the final training stages of the marathon you always ask yourself have you done enough and then the butterflies start to flutter and the nerves creep in! The day itself was a momentous occasion. I have never experienced an event like it, from the organisation to the support, the whole thing was a complete success. It truly was a magical day and I am so pleased that I took part in this race. I managed to raise around £4,000 for the charity and to give something back to all of those who have helped me through this is what it was all about. The support that I received from my family and friends was amazing and I could not have done this without them.
So my message is that no matter how hard it gets just put your mind to it and you will get through, have the determination and the strength to succeed."
Well done and thanks Ben from everyone at PAPAA for your tremendous effort and support. To support visit Just Giving
Katie's Peak District Triathlon at Chatsworth
Katie Shipley will be swimming 1000 meters in the river Derwent as part of a team triathlon in July 2016, but that is just the main event. For her training she will be spending a lot of time swimming at Dearnford Lake in Whichurch, freezing her toes off! To support visit Just Giving
Martin and Paul's West Highland Way Adventure
In spring 2016, Martin Watson and Paul Sinclair are going to embark upon the West Highland Way; a fair trek from Milngavie to Fort William. It is the hope that this endeavour will raise lots of money for Psoriasis and Psoriatic Arthritis Alliance (PAPAA). Martin knows how crippling this condition can be, and suffers badly from it on his feet. Nevertheless, this is not going to stop him from walking the 95-mile route with one of his oldest friends by his side.
The adventure will see our 40-something-year-old hikers walk about 14 miles per day through rugged terrain and beautiful scenery, camping for the majority of their nights and tackling all that the Scottish Highlands have to throw at them.
The West Highland Way is not a walk in the park, and will be a challenge for these two men, who will have to over come much to reach the end of their journey. Furthermore, Martin's late brother Phil will be in their thoughts during this venture, as he too suffered from Psoriasis. To support visit Just Giving
Abi Bamber running a 10K for PAPAA
Most people will think of Arthritis and think of the elderly. I did too until my sister in law was diagnosed with PAPAin her 20s. People like her suffer everyday not only with pain but with the cocktail of drugs and related side effects they have to rely on. This is also a disease you cannot see..... so I want to let all the brave people that suffer with this chronic illness that we haven't forgotten about their pain.
There is also limited research into PAPAA (particularly for this age group) we need to raise money to research this disease and give the people who suffer from it a chance to understand their pain and their future.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity. To support visit Just Giving
Ian Davies says thank you
We have really appreciated David's support and the information has has been able to give us when our son began a flareup recently. We also sent our son the link for the Manchester CBT funded by PAPAA.
Lyn H wanted to donate
I opted out of the ice bucket challenge but wanted to donate to a charity thats close to my heart was diagnosed with psoriatic arthritis 4 years ago and its still tough.
Sarah says thanks
Merry Christmas. Heres to a positive 2015 for research and helping all affected by psoriasis and arthritis.
Mark's weight loss
A few years ago I was diagnosed with Psoriatic Arthritis, a form of arthritis that affects people with Psoriasis. Its effects have been devastating, but with current drugs its possible to live a fairly normal life. I do miss being able to do some things, such as Ten Pin Bowling and drinking beer, but overall my quality of life has been fairly good.
Recently however, I have noticed that I am putting even more weight on (I used to be around 17-18st) and this is adding additional strain on my feet and ankles, two areas badly affected by the arthritis. So...
I decided to lose the extra weight, and as much additional weight, as possible. This will require not just a diet, not just some exercise, but a complete change in my attitude to life. My goal is two lose around 5 stone over a 12 month period, though I may need to rethink that once I start.
Once I start I will post my initial weight, and then its up to you how, and if, you help out.
The charity I have selected is one close to my heart. They were one of the main sources of information I had about my illness and gave me hope when I needed it.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.
Thanks for taking the time to read this.To support visit Just Giving
Ben Smithson: Bristol 10km - 11th May 2014
Ben’s story - I'm running the Bristol 10k 2014 for PAPAA because I want to raise awareness of my condition
I have suffered with psoriasis all my life and in August 2001 I was diagnosed with psoriatic arthritis, which is a chronic, degenerative disease with no known cure. At the time I was 18 and didn't really know what impact it would have on my life and since growing up with it you have to find ways of dealing with the inflammation and constant dull pain. You can not let it get in the way of what you want to do and with the help of new drugs and a healthy lifestyle it is possible to put the disease into remission for extended periods of time.
I’m one of the lucky ones and have responded well to treatment but others are less fortunate and it can have dramatic, even devastating, effect on the sufferers life. I have no intention of letting this get the better of me and have decided to use my diagnosis as the impetus to try and make a small difference for those who have a daily struggle with this condition. Please help me raise money to help others that suffer with this condition and find new ways of beating this disease.
I have now decided to start off by running the Bristol 10k in May 2014 with the intention of running the London Marathon in 2015.
Help me along the way with your kind donations.
To support Ben visit his JustGiving page
Elaine Smith: 60th year challenge
When I was first told I had psoriatic arthritis I didn't really know what it was. I was told there was a genetic link but other than that not a lot. Since my diagnosis 5 years ago I have tried to keep as active as I possibly can but my legs are stiff and swollen which makes walking painful I also have very painful sores caused by psoriasis. I have now developed arthritis in my neck and spine so its not looking very good long term mobility wise. I am 60 this summer so I wanted to undertake a personal challenge, and try and raise money for the charity which support us with this little known condition. I have 3 people walking with me, Sue, Lynda and Lesley. We hope to complete the 84 miles in 6 days.
I will be starting the walk on the 6th of April.Please support me if you can.All donations greatfully received !
For those of you who are still not sure what psoriatic arthritis is get hold of a box set of The Singing Detective and see for yourself.
To support Elaine visit her JustGiving page
Driffield residents suffering from a painful disease have been united at an event which raised almost £500 for a charity close their hearts.39-year-old Claire Arundel and Siobahn Hamminga, 30 both suffer from Psoriatic arthritis - a debilitating disease which affects the joints. The two women, who both live in Driffield, formed a friendship when a mutual friend put them in touch with one another, knowing they suffer from the same condition. In an attempt to highlight the illness and raise funds for the Psoriasis and Psoriatic Arthritis Alliance, the pair held a fund raising event at Cass Hall on King Street, Driffield on Saturday (September 14). The event saw revellers enjoy an afternoon tea party and stalls held by local business.
Claire said: “We raised £484.90 for the Psoriasis & Psoriatic Arthritis Alliance which Siobhan and I are delighted with.“Cass Hall was packed and we were so happy to see people enjoying themselves. We would like to thank all the stall holders, all the people who donated raffle prizes and everyone who made the day a success.
“A special thanks must go to Alan Allsop for donating a framed water colour he painted himself which was won by Michelle Bell.” The event also saw the women introduced to more Driffield residents who suffer from the illness.
“We couldn’t be happier with the result, not only did we raise a fabulous amount, and raised awareness but fellow sufferers have also come forward so it looks like we may have to set up a local support group and future events will be organised,” Claire added.
James Brett challenge
From 14th April- 1st December 2013, James Brett will be competing in 8 cycle sportive events around the UK. This means one event each month and more than 400 miles of cycling - including some pretty daunting hills. His aim is to raise money for two charities that are very close to his heart, and that he has personal experience of, which includes PAPAA.
"In August 2012 I was diagnosed with psoriatic arthritis, which is a chronic, degenerative disease with no known cure. However with the help of new drugs and a healthy lifestyle it is possible to put the disease into remission for extended periods of time. I’m one of the lucky ones and have responded well to treatment but others are less fortunate and it can have dramatic, even devastating, effect on the sufferers life. I have no intention of letting this get the better of me and have decided to use my diagnosis as the impetus to try and make a small difference for those who have a daily struggle with this condition."
Aurélie Owens is challenging herself to complete a long bike ride, a triathlon and a Half-Marathon in 2013 with the aim of raising funds for PAPAA:
"At just past midnight on January 1st 2013, I was on my JustGiving page setting myself three goals for 2013.
I shall complete three sporting events. I have now changed my original target from two triathlons and a Half-Marathon to a long bike ride, a triathlon and a Half-Marathon.
Now if you know me, you'll know that I haven't seriously exercised since July 2012 and not completed any event since my 10k in March 2012 so it's quite ambitious! I stopped training in August 2012 completely after a knee injury. Oh, and I haven't really cycled (road cycling) since August 2010! And if you do know me, you'll also know I can't really swim which will make the triathlon training "interesting"!! My aim is to complete each event and enjoy getting fit while fundraising! I'm raising money for the first of my three events: the Swindon Great Western Sportive, a 80k bike ride...yes, eighty kilometres!! I know so many people ask for donations so I'll be ever so grateful just for a pound if you could! The hope is that I train injury-free this time and I can raise money and awareness for a great cause, often overlooked, the Psoriasis and Psoriatic Arthritis Alliance. (http://www.papaa.org/about-us)
So please dig deep and donate now;-)
P.S: feel free to share this page on Facebook, Twitter, etc. Thanks a lot!"
Darren Harber took part in the Grim Challenge on 2 December 2012 with the aim of raising funds for PAPAA:
A year ago Kirsti was diagnosed with rheumatoid arthritis, It was a real shock to me to realise how vulnerable we really are. She has since started medication to slow the effects of the disease, and is learning to deal with the effects of arthritis in her day-to-day life.
Now with odds that seem to make it nearly impossible, I too have been diagnosed with psoriatic arthritis, it is a chronic disease similar to other forms of arthritis but affects only them with psoriasis. Before the onset of the disease I really wanted to run an endurance race, and after my diagnosis I feel that i still need to complete this challenge. I have been ordered by the doctor to keep exercising! So this is what i intend to do........Not sure the Grim Challenge was what he had in mind......"Thanks" to Scott Gair for that one.
I want to raise money and Awareness for the Charity PAPAA. They give free support and advice to people suffering with psoriasis and psoriatic arthritis and do an amazing job in doing so. I really thought that Arthritis was a disease that only effected the Elderly but have since come to realised that it effects people of all ages in all walks of life
Joanna Vaux took part in the Bupa Great South Run 2012 on 28th October 2012 with the aim of raising funds for PAPAA:
"Please help me raise lots of money for the PAPAA which is a charity which continues to support those who suffer with psoriasis, a skin condition and psoriatic arthritis which can be the result of having the skin condition. This charity provides traditional patient support as well as new innovative approaches.
I have Psoriasis and have done from an early age. When I was 17 I went into hospital with painful, large, swollen knees and toe joints to find I had Psoriatic Arthritis. At the time, I thought my chances of walking properly again were slim as I depended on a wheelchair. After prayer and ongoing medication It wasn’t long before I was able to walk independently and even run! 5 years later I want to support a charity which go out there way to support those like me, the literature they write is very supportive and helped me lots to understand what I had! There are lots of people who suffer very badly with Psoriasis and Psoriatic Arthritis, who depend on the support from this charity and that’s why I want to support them by running 10 miles at the Great South Run in October!
Philip Cooper walked 87 miles of Hadrians Wall (West to East) 28 May to 1 June 2011
Philip decided to walk the 87 miles of Hadrians Wall (West to East) for PAPAA. To make things more difficult he and his fellow walker are doing the walk carryied all their own equipment (tents, food, clothes etc). Only 5% of walkers do it that way, most other walkers join organised groups who take the equipment in a van from campsite to campsite.
In memory of Duncan Marah who died on 16th October 2009
Carol Marah set up a JustGiving page, in memory of her husband Duncan Marah, who sadly died on 16th October 2009.
Duncan lived with severe psoriasis, and never allowed it to rule his life, but since his death it became clear how much of a profound effect his having psoriasis had on the outcome of his life, which ended too soon for everyone that knew and loved him.
Duncan would have wanted us to celebrate his life, and you can help us to do that by donating to a charity that he would have believed in.
35th Marine Corp Marathon - Washington DC on 31st October 2010
Duncan Burns ran the the Marine Corp Marathon on 31st October 2010 in Washington DC on behalf of PAPAA.
Run Balmoral 10k and 5k on 24th April 2010
Sarah-Jane Stephen set herself a (large) challenge of running in the Run Balmoral 10k event on the 24th April 2010 raising as much money as possible for PAPAA.
Reebok Bristol Half Marathon 2009 on 6th September 2009
Barry Cotter took part in the Bristol Half Marathon 2009 on 6th September 2009.
My skin psoriasis started in my early teens and has persisted ever since. However the condition was not serious enough to really affect my lifestyle. It seems likely that the trigger for the onset of my arthritis was the breaking my shoulder in a rugby match. After that I have suffered with problems with both shoulders, back, knees (leaving one permanently swollen), elbows, hands and ankles. At one stage I struggled to walk any distance due to the ankle swelling. After courses of physiotherapy, hydrotherapy, 12 cortisone injections (six in the ankles) together with methotrexate and a NSAID (rofecoxib) my lifestyle eventually stabilised but with quite significant restrictions.
I took no or very little exercise for over two years and my weight increased. However as I had a sedentary job my work was largely unaffected save for some problems with fatigue. Had I not chosen to stop methotrexate to try for a third child I do not know what course my overall health would have taken. When off the methotrexate I found that although symptoms grumbled on in various sites I was able to cope pretty much as when on it.
The real breakthrough for me came when I eventually tried a personal trainer (recommended as he had a number of clients with various disabilities). What then happened was a slow phased increase in fitness and movement. For about six weeks there was no gym equipment used and some of the exercises I now realise were pilates based. Then he planned an exercise regime based on increasing fitness and coping with which ever part of the body the arthritis was affecting at any given time. Progress was slow and there were set backs, but the overall trend was upwards and I was coping with no drugs at all.
September will see the third anniversary of my first visit to my personal trainer and my attempt at the Bristol Half marathon. The training has been difficult and I have to watch my knee very carefully, but I feel the benefits, both mental and physical of the regime of running. For the race itself you may not be surprised that as someone who could not walk easily not many years ago, I am interested only in finishing rather than achieving any set time.
For a long time I dismissed the idea of going to a gym as impossible given my arthritis and I now regret the wasted time. I lived within what I believed to be my limitations and adjusted my lifestyle accordingly. However the truth was that with structured training I was in fact capable of very much more despite the fact that the arthritis was still present. However whether it includes running 13 miles remains to be seen!
Flora London Marathon 26th April 2009
Linda Owen took part in the London Marathon on 26th April 2009.
Before I showed any signs of psoriatic arthritis, I ran regularly, and I participated in races ranging from 5k to marathon. I raced at least once a month and more frequently in summer and have completed 7 marathons and numerous half-marathons.
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