Thursday, 19 May 2016

An introduction to our story and the Challenge by Katie

This year Gary and I are running and fundraising for the British Dupuytren's Society (BDS). Most people have never heard of Dupuytren's disease and so I thought I’d share our story.

My husband, Gary, has a condition called Ledderhose disease, it is a rare condition that most people haven’t heard of but it is a life altering and possibly threatening condition. He had a non cancerous tumour growing on the arch of his foot pushing on a nerve. Imagine having a solid rock in the arch of your foot, every time you put pressure on it it’s more painful and it’s constantly there, a dull ache and certainly uncomfortable. Gary was in so much pain that he was barely able to walk, he had to use a walking stick and it was a consideration everywhere we went. He loves badminton and running, both of which he was completely unable to do with this condition. Despite being barely able to walk we were unable to get a blue badge and had very little support from anyone. I was having to transport him around and think of the closest I could get to places to drop him off, we didn’t enjoy days out because he couldn’t move and everything was affected, even our wedding.

We, obviously, went to the NHS and the options they gave were very poor. Steroid injection which helped for 6 months, foot insoles to help shift his body weight off the lump (didn’t help a great deal) and surgery. Surgery would involve cutting out the lump but the chances of regrowth are very high and usually it grows back worse. The lump is caused by scar tissue so you could potentially get lumps all the way around the site. We didn’t see this as a feasible option so we were faced with a 25 year not being able to walk or be active for the rest of his life.

At this point I contacted the BDS for help and advice. Through the charity we were put in touch with a private specialist who offered radiotherapy. We had to raise money and pay for this treatment but it was worth it. The radiotherapy reduced the size of his lump so it is no longer painful and no longer a consideration.

5 years on my husband has lost 7 stone, is really active and is able to enjoy the activities he loves again.

Gary writes a blog post about his research and many people contact him each year with the condition. Often people are unable to pay for radiotherapy and so are having to live with this debilitating condition. We’d like to be a part of changing that so others can have the drastic improvement that we have seen.

For the whole of 2017 we will be raising money for the BDS and have certain targets in mind.

Firstly we will both be running our first marathon in April in Brighton. This is something that we never thought Gary would be able to do and has always been a dream of his.

By the end of 2017 it’ll be 6 years since Gary received his treatment so he would like to run 2191 miles throughout the year, this is the number of days since his treatment.

Finally he would like to run a sub 18:31 5Km race as this is the year, 1831, that the first paper of Dupuytren's was released.

My targets for the year are:

Completing my first marathon

I would like to complete 60 races (including parkruns) throughout the course of the year, this is one race for every Gy of radiation that Gary received over the course of his treatment.

And another one yet to be decided

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