Tuesday, 22 May 2012

Meeting with a Dupuytren's patient

So the treatment today went pretty much as expected but I didn’t get the pictures that I wanted and I shall explain why. When I arrived I was told by one of the nurses that Dr Shaffer had an appointment on Monday with a Dupuytren’s patient who was getting radiotherapy but they were starting to develop Ledderhose.  Dr Shaffer had told her that he had a patient who had Ledderhose and whom he knew had done lots of research and as it turned out my appointment was directly before hers. So they asked me if I would be willing to stay after my appointment and chat with this lady. I of course said yes. How could I not? What I would have given to be able to talk to someone about this when I had it in the early stages. So after my appointment I waited round and then this lady and I had a chat.
I have stuck the above logo in to demonstrate Dupuytren's, as you can see one of the fingers has contracted.

She started by explaining that she had DD and was getting RT and was starting to show LD but was not in pain at the moment and asked what had happened to me. I went through the usual story and all the different things I had tried and we learnt that we had both considered going to Germany for the treatment though I had got further in the process and we agreed that the cost of going was only worth it when you had more than one extremity that required treatment. We were both very happy with the treatment that we were receiving.

She was in her second week which was about 6 weeks after her first and it was reassuring to hear that she can already see improvement from the first time. Her only thoughts were that she wish she had got it done sooner and that was why she was asking me on my thoughts on Ledderhose. I said that I didn’t think it was worth getting it done until it was painful, sure getting it done earlier might help and it might delay progression but you don’t know that you are going to progress to the point where it is painful and therefore why should you spend that money and get the dose of radiation when you might not ever need it.

Annoyingly I picked up a different bag this morning so I didn’t have any leaflets with me but I said just Google Ledderhose Disease Blog and you should be able to find it easy enough and that is what she said she would do. So if you are now reading this then hi!

I am thinking of taking some of my leaflets with me tomorrow and the only thing is that I wish I could change it so that the radiotherapy bit said not approved for use on the NHS rather than in the UK but the leaflet does direct to this blog where that information is explained and I even have a link to Dr Shaffer on the helpful links page.

I have ordered some E45 to come this evening so I can start using that and I am sure that in the coming weeks I am going to see a change for the better, well I hope so anyway.