Story
Thanks for taking the time to visit my JustGiving page.
I first became unwell in September 2000, when I was 12 years old. It took months of GP visits, blood tests, hospital visits and unpleasant tests in hospital which led to my diagnosis of ulcerative colitis (a form of inflammatory bowel disease, or IBD), inJuly 2001. My mum had to beg my consultant to give me some treatment, as I was so poorly that she didn’t think I would survive much longer. I remember going on holiday that year and having to use a wheelchair, as I was so weak, severely anaemic and underweight that I could barely even walk.
I started taking steroids in July 2001 which set me on my road to recovery. Despite treatment, IBD currently cannot be cured, and comes in periods of remission and flare-ups. During my teenage years, I continued to have several flare-ups a year, particularly around times of stress like exam time at school. I struggled through, determined not to let my illness stop me from succeeding. I did well in my GCSE’s and A-level’s, and started University in September 2006. The work load was very high, and at times so were my stress levels. This bought on more flare-ups, requiring treatment with steroids and the occasional hospital admission. Determined to succeed, I completed my undergraduate degree with first class honours, and went on to complete a masters degree with a distinction, all the while fighting my IBD.
I started working in September 2010, and quickly settled in to my new job and appreciated the fact that there was now significantly less stress in my life. My IBD remained well settled for several months. However, In July 2011 I started getting severe abdominal pain, and was quickly admitted to hospital with suspected appendicitis. After a few days the pain subsided, so I was discharged with my appendix still intact. The pain continued to wax and wane over the next few months, and after many tests and more doctors visits my doctors finally discovered that my previous diagnosis of ulcerative colitis was wrong, and in January 2012 I was diagnosed instead with Crohn’s disease, a different form of IBD.
One treatment for Crohn's disease is bowel rest. I endured months on end without ANY food and consuming only water and a specially formulated liquid, designed to absorb easily and give me all the nutrients I needed. This was supposed to give my bowel a rest and allow it to heal. Whilst the liquid diets helped a little, they didn’t heal my inflamed bowel completely. When I started reintroducing food, I painstakingly did an elimination diet, testing every food one by one to see if I could identify anything that made my Crohn’s worse. I continue my elimination diet to this day. As I still had some on-going pain and inflammation, my doctors started me on an immunosuppressant medication, designed to knock the inflammation down. Again, it was partially successful but there was still some lingering inflammation and I continued to suffer from abdominal pain and low energy levels.
In July 2015 I started another powerful medication, an immunosuppressant which is given intravenously. I have this treatment in hospital every 8 weeks. Again, this was a partial success and kept the disease at a low, grumbling level which was easier to manage.
In November 2016 I developed appendicitis, which was thought to be caused by grumbling disease activity with my Crohn's, which happened to be located in the bowel right next to the appendix. The doctors didn't want to operate because of the existing damage to my bowel caused by the Crohn's, but after days in hospital on strong IV antibiotics didn't settle the appendicitis the doctors had no choice. I had to have emergency surgery, not only to remove my appendix which had started to perforate, but also to remove around 15cm of my small intestines next to my appendix. This is known as a ileocolic resection. Because my appendix had started to perforate I developed a post-surgical infection in my abdomen. Altogether I was in hospital for nearly 3 weeks and this nearly cost me my life.
After resection, most people get to enjoy a few months or years without disease recurrence, particularly for those with localised disease like I had. However, I wasn't that lucky. Within weeks of the resection my bowel had started to become ulcerated and inflammed again. My doctors didn't believe that symptoms could return so quickly, so it took some convincing to get them to re-start the IV treatment I'd been receiving prior to having my resection (which had to be stopped at the time of the surgery because it can reduce wound healing).
In December 2017, I finally got the news that my Crohn's was in remission, for the first time in over 6 years.
Whilst I relish in my new found health, the knowledge is there in the back of my mind that this good period is unlikely to last forever, my treatment options are growing increasingly limited, and there are also dangers lurking from the medication I’m on, such as cancers and increased infection risk. This brings me on to the Crohn’s MAP test and vaccine, which are offering hope to thousands of Crohn’s sufferers worldwide.
MAP is a bacteria known to cause an illness in cattle similar to Crohn’s disease. MAP infection in humans is an area of research which has received scepticism from many Crohn’s specialists, in part due to poorly conducted research and mixed results which have been difficult to replicate. Up until now there has been no reliable way of testing for MAP infection in humans. Professor Hermon-Taylor of Kings College London has been working effortlessly for most of his working life and during his retirement years to develop a test for MAP in humans, and whilst he has finally succeeded in developing a test he has been unable to secure funding for it to be trialled in humans. Alongside the MAP test, Professor Hermon-Taylor has developed a vaccine which he believes can eradicate MAP infection. It has been trialled in cattle with impressive success rates, and in 2017 the vaccine entered phase I clinical trials in humans. Phase II clinical trials are due to start in 2018.
Three questions exist here: do people with Crohn’s disease carry MAP bacteria, and the MAP test that the professor has developed will answer this question. If this proves to be the case, the second question is whether the vaccine the professor has developed can cure the MAP infection.Thirdly, will clearing the MAP infection “cure” people with Crohn’s disease? These questions can only be answered by clinical trials. All that is lacking now is funding, and whilst a huge sum of money has been raised by the Crohn's MAP vaccine team to date, more is needed to see this exciting work through to completion.
A potential cure for Crohn’s disease is sitting in a fridge in a Kings College lab, and the only thing standing in the way of it reaching the Crohn’s patients who could benefit so hugely from it is money. Myself and a team of people, some with Crohn’s disease and some family or friends of people with Crohn’s disease, are fighting for the MAP test and vaccine to enter human clinical trials, as we believe it is the best hope of a cure for people with Crohn’sdisease. We simply cannot let this opportunity pass, and allow continued suffering for people with Crohn’s disease whilst a potential cure exists.
To date, thousands of pounds have been raised by this team, through fundraising and donations from friends, family, colleagues and even strangers. We are effortlessly working to raise the funds needed to bring the MAP test and vaccine to clinical trial. Every donation, however small, brings us a step closer to discovering if the MAP test and vaccine are the medical breakthrough we are all hoping for.
If you wish to find out more about the Crohn's MAP vaccine and test, please visit
http://crohnsmapvaccine.com/
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.