Welcome to the forum RedHed

Sorry to hear your diagnosis. I'm not sure what to advise about the drug choice with the epilepsy and the link to DD. One to discuss with your GP and epilepsy consultant.

You do have some choices with the DD though, starting with do nothing but monitor it and wait to see how it progresses. Start keeping a monthly photo record. Of course you don't want it to progress to a contracture, and it might not, but you can use some time to plan the first treatment you will have.

There's lots of information here on this site, and the British Dupuytren's Society has produced a leaflet http://dupuytrens-society.org.uk/TreatmentD.html you can use to discuss treatment with your GP.

Radiotherapy Treatment for early stage active and progressive disease has the best prospects of slowing progression down or even halting it. The levels of radiation used are very small, not comparable to cancer treatment, and the depth of penetration is restricted to a few mm only. So your consultant (was it a surgeon?) was probably being pessimistic about the future possibility of successful surgery after radiotherapy. Your difficulty in the UK will be getting RT done on the NHS. The treatment has NICE guidance but very few Hospital Trusts are doing it.

After that, it's a choice between NA and Xiapex, for managing relatively small contracture, and this may keep your hands straight for many years. Surgery has been the gold standard in the UK for many years but the availability of these other treatments means that this is now being left for severe cases almost as a last resort.

In the meantime look after your hands. Wear gloves for many things, driving for example. Try to avoid trauma and strain with your knitting and fine hand work, perhaps via new needles and tools with ergonomic grips.

Best wishes

Hi Redhead,

Welcome to our special club! We're all members and really don't want to belong to the Dupuytren's club, but we're in it together.

You came to the right place. There is a wealth of information on this site and you can use the Search forum option in the menus on the left. You might put in something about RT in the UK. There are others who have been pursuing that. Maybe you can hook up with them.

You can also send Private Messages by clicking on that menu at the top, right of this page.

Sounds to me like you're a candidate for RT. Agree, the dosage is tiny and not deep for this non-cancerous treatment. It disrupts Dupuytren's disease and has a high percentage of success in stopping progression. It is nothing like radiation to kill cancer cells. I had RT for Dupuytren's on my hand. So-oooooo glad I did!

We all have been at the place you are. We didn't know what to do. It seems like you're on a path that you think is right. It sounds reasonable to me. As you research, you'll come up with the best plan for you.

Dear RH,

I also have early DD - diagnosed last October like yourself. I have decided on the RT route based on a study of information on this really informative site. I am really delighted that I have chosen this route as RT is most effective for the early stage DD.

Prof. Seegenschmeidt in Hamburg offers a very cost effective treatment (about 400 pounds per hand I believe) and both hands (if necessary) can be done at the same time.

Can I suggest that you email Prof. S. saying what you posted in your first message to this site. Prof. S. will know if there are any concerns relating to doing RT - based your other health issues.

You will find Prof. S. to be very responsive to emails. Note - Germans like to holiday in August - so it might be good to catch him soon.

I wish you every success in tackling this condition early.

RedHed:

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Thanks everyone for your advice and friendliness.

I`m rapidly coming to the conclusion that RT would be the best course for me, and as I live in north east England, and the NHS RT specialists are way down south, even if I could get NHS treatment its probably just as financially viable for me to hop over to Hamburg.
So I will write to Prof S ASAP. No point in waiting for a second opinion when time is critical.

Is anyone anywhere doing any research on this fascinating condition?

There is also a conference web site

http://dupuytrensymposium.com/program.html