Rebecca Willers (37) speaks to us about raising the profile of scleroderma, it's symptoms, early diagnosis and how her hopes of climbing Everest must go on hold.
Rebecca now runs Shepreth Wildlife Park in Cambridgeshire, and when she reflects on her earlier days, she was a very healthy child and active teenager.
“Growing up in a zoo, I tended to be rolling around in the mud which must have been a good thing for my immune system, as I was never really ill as a child. I was always very studious and loved swimming. After sixth form I landed a job in a publishing house, so deferred my law degree at university. As a result of my, albeit short, career with the magazine, I ended up as a freelance journalist for many years after, but my passion was always for my zoo, so shortly after my 20th birthday I started working for my family's wildlife park and never looked back. My only regret was not going to university, so instead I took the Open University route and spent all my spare time completing a BSc (Hons) in Psychology, FdSc Zoo Management, Veterinary Assistant Diploma and an MBA. My next step was a PhD"
In the early days at the wildlife park Rebecca and the team would work crazy hours late into the night looking after the rescued animals, but in the latter years their focus moved to conserving endangered species. Rebecca launched a charity back in 2011 with the sole purpose of saving endangered species, including the opening of a dedicated hedgehog hospital, which now admits over 650 poorly and orphaned hedgehogs every year.
The charity came off the back of lots of fundraising they were already doing. Rebecca had started a few years before completing several sponsored open water swim events, including the English Channel (relay), this ignited her passion for extreme sports and from there she started climbing mountains, including Kilimanjaro.
In 2015, Rebecca was on a trek through the jungle with the Tiger Protection and Conservation Unit (TPCU) in Kerinci Seblat National Park in Indonesia. It was part of a sponsored event she had arranged with other UK zoo directors, in a bid to raise awareness and funding for the plight of the Sumatran tiger, as well as actively being involved in anti-poaching work. The teams were split into smaller units and spent their nights living rough in the jungle. Many of the UK team were ill throughout the trek, but despite sleeping in very close proximity, Rebecca remained healthy.
When she returned to the UK, Rebecca was hit by many symptoms over the next 18 months, including heart burn, chest pains, fatigue, weight loss, various virus', swollen hands, adverse allergic reactions, painful joints and shortness of breath. Each time these symptoms would be investigated nothing of any significance would result. She then developed Raynaud's during spring this year and when this continued into summer went to see her local GP who referred her to the rheumatology department for suspected arthritis.She was eventually diagnosed (by phone call) with the disease in September2017, before boarding a plane for an event in Hungary. “I hadn't heard of the disease before, so didn't really think anything of it at the time, my only concern was whether I could still climb Everest the following month and start a family. It was only when I mentioned it to a doctor at the event I was attending, that his response made me realise that I perhaps needed to do a bit more research into it. I received the formal letter from the consultant when I returned the following week having been researching on the internet myself, it was at this point I realised it was the diffuse form, which came as a bit of a shock." Rebecca, needed more answers, so investigated a way to see Professor Denton and very soon had a private appointment lined up.
“Prof Denton was amazing. He explained everything in a clear and precise manner. He was evidently interested in my situation and left me feeling very confident with the care I would receive. I explained I had asked for an NHS referral to the Royal Free, as the leading experts in this condition, and he suggested that shared care with my hospital in Cambridge was the logical step forward, so I could still have all my tests locally. I have now been on methotrexate and Losartan for 2 months, and will be seeing Prof. Denton again in January to assess my progress with this medication"
Just this week, Rebecca has come to the end of her anxious wait to discover that it has not yet spread to her internal organs and is immensely happy."Animals are my life but now I sit in the zoo's office filling in paperwork avoiding the cold. I'm not sure what triggered the disease, the environment, a tropical parasite or perhaps this has just been in me all along, either way, I'm facing it head on. The scariest thing has been how rapid the onset has beenso far, but having met with Prof. Denton I am now ready to face the next three years with confidence, which apparently is likely to be the most aggressive period for me having anti-RNA Polymerase III antibodies".
Rebecca recently shared her story with the Daily Mail and obtained some incredible coverage worldwide, on-line and locally by appearing on ITV News, Anglia.
“Whilst it was great to raise the profile of scleroderma, the press does tend to sensationalise headlines, whilst it is always frustrating to be edited in a way so that people do not get the full story, I hope it has overall, started to get more people talking about the condition and its symptoms. My hope would be for others to also get earlier diagnoses because of greater awareness. I have been overwhelmed by the global support people have given me, since this news piece, and how kind they have been to share various treatment ideas with me. I plan to research these and share them with the SRUK in the hope that some of these may help fellow sufferers in the future".
Rebecca shared that one of the hardest things to face, was being told she couldn't go on a trip of a lifetime. She was forced to cancel a climb of Mount Everest, in aid of the Shepreth Wildlife Conservation Charity's Hedgehog Hospital and TCPU's team in Sumatra, after medical advice. The full story can be found on ITV Player.
"I felt I was letting people down, by not going on the trip, but I'm embracing a very positive attitude towards my condition, as I'm acutely aware of how lucky I am."
So, with her disease to conquer first, plans for the climb must go on hold.
"I have always been a very positive, upbeat person and there is no way this condition will change that about me. As soon as I regain my energy levels I will be planning the next mountain challenge, just perhaps to a slightly warmer destination."