So there is a new group in town on Facebook, the Dupuytren's Advocates for Radiation Therapy Group or DART.
The link above will take you to this group. To quote the group information:
Dupuytren's Advocates for Radiation Therapy
(DART) is a new forum which aims to serve the needs of the newly diagnosed as well as members who have already gone from diagnosis to treatment.
Our goal is to be supportive of members who need information about the disease, to direct them to resources and to be empathic providing a sense of community with other forum members who share their stories. We will also strive to work on goals together, such as exploring possible ways to raise funds for a cure, work with researchers on a ground breaking American Study on the safety and efficacy of Radiation Therapy and to broker a collaboration between Hand Surgeons and Radiation Oncologists so that we change the course of patient access to Radiation Therapy care and improve outcomes. It is our hope that Radiation Oncologists will partner with us to work towards our goals. We have an opportunity to change the course of history for millions of sufferers worldwide. We look forward to working with all of you towards achievement of our important goals.
We hope to have spirited debate and discussion about all of the issues facing Dupuytrens patients but our special focus will be on early intervention with Radiation Therapy.
We are going to be the change we wish to see!
This is an interesting idea and something that I have joined, I think that trying to get the word out about a treatment that can stop multiple surgeries or amputations can only be a good thing, at least make people aware of the choice.
Further to the above I will also soon be posting another patients experience on radiotherapy and hopefully have a few other things to come up soon. Of course focus at the moment is preparing for the conference next month!