Thursday, 8 November 2012

The struggles of a Ledderhose? Patient

So at the moment I am in regular contact with a really nice guy from the UK. He is a Dupuytren's and Ledderhose patient in the UK and is currently trying to get everything sorted. He has done an interview for me which I will probably post in the coming days and then update in the distant future once his troubles are hopefully sorted. Anyway at the moment he is really just seeking a diagnosis of Ledderhose disease and this is how his most recent appointment with a 'specialist'. went, excuse any grammar etc as he has recently had surgery on his Dupuytren;s and so I am sure you can imagine that typing is not easy (I have correct some of it): 

"Hi Gary

Very frustrating business this Thursday. went to see the orthopaedic 'foot' specialist today. it was obvious he was a general orthopaedic consultant from the start. After ten minutes talk I asked about his specialization and got an evasive brush off...........when I mentioned Ledderhose (several times) he looked like i was 'talking in tongues'.........he just stared blank feigning he knew what I was talking about. He seems to think anti-inflammatory gel is the answer.

He pointed out these fibrous nodules in my feet (plantar fascia) were very small (I'm wasting his time) and the Dupuytren's in my hands was not cancerous! All in all my limited knowledge of possible diagnosis superseded his - which is worrying especially as these consultants earn a lot of money and the NHS is strapped for cash. I went to a private hospital paid for by the NHS so I dread to think of the cost.

He asked what I wanted to do! I mentioned physio he agreed - I mentioned orthotics he hopes the physio will refer me - I mentioned radiation he'd never heard of it. On top of that I went to the physio dept and they only deal with post operative all in all..grrrrrrrrrrrrrr

So back to the GP for another referral hopefully with a consultant who has some grasp of feet...........whilst I suspect i have Ledderhose I would gratefully accept another diagnosis from a learned practitioner.

On lighter note...........I'd love to stand bare foot in the snow as one symptom I'm getting is zinging hot feet.

On a much lighter note............thanks for sharing the image of your little 'un.............that must of filled you with much joy........hope your wife is feeling better.

Oh if you like warm feet I have a pair of these.............goose down duvets for the feet: )

peace matey..............john"

This is not the first and I am sure it will not be the last e-mail of this kind that I get, this is why in the British Dupuytren's Society we are (well the others have been and I am starting to help) hoping to be able to help educate all the specialists and although we cannot get them all to learn all the details hopefully we can get the people responsible for the resources that they are likely to look at to update them and therefore the patients will get pointed in the right direction. 


  1. Each time I read stories like this it makes me sad and angry. Is it really for the public to educate the "specialists"? Why are the medical profession not being educated from within?
    At the same time, I feel proud of you, that you are providing hope, advice and answers for sufferers! Can we consider doing another 5k (or 10 for mad people!) to raise money to support you in this? Maybe Windsor in April?

    1. Why should we pay the entrance fee? Why not just set up a route ourselves and do the run? What we would have paid in entrance fees can then be given as donations and we can do the run whenever and wherever we like so that it is convenient for everyone to join in. Would be great if we could find some why of getting donations from a wider audience. Perhaps those of us not wanting to do a run could do a spin off of the 3 legged race and have 11 legged race or something?

      Who knows, I am trying at the moment of thinking of ways of appealing to more people and being able to generate interest and get donations. All suggestions are welcome/

      Yes it also makes me angry, I think the problem is that the specialists are just hand/feet specialists and the information that they are taught and given is down to certain groups and databases and it is these databases that we at the BDS are in the process of trying to get changed at the moment. A long process but one we are going to try to stick with.

      I feel honoured to be able to help all of these people, and the fact that these people are coming to me and giving such nice comments. Some of them, like this gentleman are starting to become my friends because we all need people in a similar situation to talk to.

      Anyone reading this that wants to get in touch please do.