I have started a closed Facebook group for those of you with Radiation Induced Lumbar Plexopathy and your carers.
For those of us who have RILP it is a very lonely and isolating experience, as there is no support and little understanding. You start to feel like you are the only person in the world with this, but in fact I believe there are more than the medical profession thinks!! Since starting this blog I have been emailing a few other sufferers and our stories are all very similar. They are spread across the world in the US, England and here in Australia. I felt it would be helpful if there was a place we could all “gather” together and support each other, share experiences, vent, find what helps and maybe to raise the awareness of this problem with the medical profession.
It is interesting looking at information from some hospitals on “Pelvic Radiation Disease” that they do not include nerve damage or fibrosis and RILP is certainly not included. The emphasis is on bowel and bladder problems. The issue is that patients can have these problems too, but may also be starting to have symptoms of RILP, which is not diagnosed, so nothing is done to help. Maybe as a group we can get this information added rather than swept under the carpet. I had one radiologist say to me, “It is not possible, I have never seen it!” He was not interested in my case or learning about RILP, with that attitude nothing will change!!
To join this Facebook group you just need a Facebook login. After asking to join look out for a message from me on FB so I can ask a little about you and your medical history … I will then join you up to the group if it is the right place for you. I am also sharing the running of this group with David of People Beating Cancer, he also has RILP. Lets see if we can make a difference together…
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