When Deborah Gath was 19 years old, she weighed just over six stone and could hardly walk.
She had been suffering from chest infections and upset stomachs since she was aged 12.
Doctors had diagnosed her with erythema nodosum – inflammation of the fat cells under the skin – and as a result she missed a lot of school.
At 17, her stomach pain really increased, her bowel urgency became intolerable and in her own words: “I just felt ill all the time.”
Her doctor put it down to late teenage depression. Her social life had stopped, but this was only because she felt so ill.
Over the next two years Deborah’s weight plummeted to just over six stone.
Her right knee had started to hurt and she woke up one day to find it so sore and swollen that she could hardly walk.
Deborah, of Hillsborough, Sheffield, said: “I went to the doctor and he just looked at me and said: ‘Oh dear, I think we have a problem.’
“This was followed by blood tests and after initially paying privately to see a consultant - I was told then it could take up to six months to see him on the NHS - my Crohn’s was finally confirmed.”
Crohn’s disease is a debilitating and aggressive form of inflammatory bowel disease. It affects around five million worldwide, including more than 100,000 people in the UK – and numbers are increasing, especially in children.
Treatment options were limited back then for Deborah. She was put on steroids that helped calm the inflammation, but every time the dose was reduced it flared up again.
In 1991, she had surgery to remove part of her small bowel. But in 1992, after she gave birth to her daughter, now 22, things flared up again.
Deborah, 48, said: “As a single mum with Crohn’s and a small child to raise, life wasn’t easy. I have always worked, so this also made life hard.
“My daughter had to learn to live with my disease too.”
Deborah’s health took a turn for the worse again in 1999, and in early 2000 she was admitted to hospital where doctors discovered her bowel had perforated at the site of the previous surgery.
She underwent further surgery and what followed was what Deborah describes as her ‘golden years’. She met her future husband and felt the best she had ever done in her life.
But in 2008 her illness flared up again and things have been downhill ever since.
She said: “After 30 years of Crohn’s I don’t feel I have seen much improvement of the disease care. It is a painfully debilitating disease that can leave many feeling isolated, housebound and very lonely.
“Very few people understand what it is unless they know someone with it. Even then their knowledge of the disease can be very limited.
“Awareness of the impact of the disease is just not very good at all.
“There is very little help out there for people with the disease – no counselling, many turn to forums and Facebook groups as they feel no-one, even their closest family member, truly understand what they are going though.
“But on the same note, Crohn’s patients tend to be hard workers. Many don’t talk of the disease they have because they are embarrassed. It is seen as a pooh disease and subject to many jokes and sniggering. It is much more than having a dicky tum.”
But all hope of a cure is not lost.
Deborah, who works for Places for People Housing Association, is part of a small team of volunteers which is fundraising and raising awareness of a vaccine, which could cure the disease once and for all.
A team of scientists – led by Crohn’s disease expert Professor John Hermon-Taylor – has developed a vaccine that targets mycobacterium avium subspecies paratuberculosis.
Prof Hermon-Taylor strongly believes that Crohn’s disease is caused by the Map bacterium – a distant cousin of Tuberculosis – which is spread through the food chain and survives pasteurisation of milk and chlorination of our water supplies.
Tests have found that all Crohn’s patients tested as part of the research, including Deborah, are carrying the Map infection.
The vaccine has been developed after much of the £850,000 of funding was donated by families affected by Crohn’s.
But in order to get the vaccine manufactured and into clinical trials, a further £300,000 is needed.
With the help of family and friends Deborah has helped to raise more than £3,000 for the cause this year.
She said: “The vaccine is a new therapeutic vaccine that is designed to target and kill the bacteria and offer protection to further exposure of the bug.
“The professor made a particular promise that he would help cure this disease once and for all and we believe that his vaccine could potentially do this. If not a cure for everyone, we believe it will seriously attenuate the disease for many.
“But as is the case with any new development of this nature, funding is needed to ensure the trials go ahead.
“This work is too close to valuable answers about the cause of Crohn’s for it not to be fulfilled to go to trials.”
n For further information and to get involved visit www.justgiving.com/CrohnsMAPVaccine-MEN9150/