Polegate dad talks of battle with condition

Gary Manley
Gary Manley

A dad who suffers from a rare and painful condition which left him struggling to walk has spoken of his fight to overcome the disease - and how by setting up a blog he has helped hundreds in a similar situation.

Gary Manley, from Polegate was just 22 years old when he was diagnosed with Plantar Fibromatosis - otherwise known as Ledderhose disease.

The condition sees a painful benign lump grow at the base of the foot. Although not life threatening it can have a debilitating affect on people’s lives. Gary, who works in science, had to give up his love of sport.

Gary said: “One evening after badminton I noticed the arch of my foot hurt and this pain was also present after a run the next day. On further inspection I could feel there was a pea-sized lump in the arch of my foot.”

Gary was told he should start physiotherapy but after a long wait the team said they could not help. In 2010 he was given a steroid injection into the lump which eased the pain for six months but it returned.

In 2011 he tried custom shoe inserts to put less strain on the nodule but they did not work.

Gary continued: “By March 2012, a month after getting married, I was using a walking stick and was told my last option was surgery but that surgery was not a good option. The pain was so bad I was really considering having it done. I was often reduced to tears and was in so much pain I was spending all my free time researching and working on the blog.”

Gary set up his blog as a way to let his family and friends know what he was going through.

“I soon realised I was in an unusual position as a patient as I understood the majority of the scientific information and I started posting analysis of scientific and medical papers and any other useful information I came across.

“Within months I was getting people contacting me and asking for help and sharing their experience. This led me to interview patients, I now have a collection of patient interviews from around the world for all different type of treatments.”

Gary’s blog has been so successful he was made a trustee of the British Dupuytren’s Society and is their Ledderhose specialist. He is also running a patient survey which is the biggest combined Dupuytren’s/Ledderhose survey to date. He will present the results to the medical community next May. His blog has also been nominated for the UK Blog Awards.

Gary can now run and play badminton again after opting for radiotherapy. It was not available on the NHS but a specialist was funded by his grandparents and family and friends.

He said: “By New Year I had played my first game of badminton, and made the decision in 2013 I was not going to use the walking stick, and would try running before my wife gave birth to our daughter. By May I was running 5k and in November 2013 I ran the Brighton Brooks 10k. This was all due to radiotherapy, a treatment option not available on the NHS but widely considered the best treatment available.

“Many patients go from leading full and active lives to being stuck in their homes. I do the blog because when I was really lost, I could find nothing and I don’t want others to be in that situation, ultimately I want to give others hope where I found none.”

He hopes by entering the blog awards it will bring awareness and different treatment options. To vote for his blog: www.blogawardsuk.co.uk/candidates/Ledderhose-Disease-blog-2/ Visit: ledderhose.blogspot.co.uk