You may possibly have noticed I’m a bit quiet at the moment.
Reason being that typing with my right hand is becoming increasingly difficult and best restricted.
I have had Depuytren’s Disease (which leads to Depuytren’s Contracture) in my hands for several years now but without causing much problem. Right hand much worse than left and in that I’m fortunate as I’m left handed.
If you’ve never heard o fDD (and a lot of people won’t have, including people who have it and just think they have arthritis) here it is
I’m just spreading the word as the more it is known the more chance someone will try to find a cure as there is none at the moment. May also help anyone else who has it.
There is no cure.There is treatment, of a sort.
Most doctors on diagnosing it for you will say “oh that’s not to bad yet. We can operate on that when your fingers have curled in”.
I know all about that as it is hereditary and my mum had it and for the last few years of her 93 year old life could only use a child’s fork and had to have her food cut up. The first operation she had went wrong too … which is why I am fighting now to get sorted so I don’t need invastve surgery later.
Mine flared up a couple of years ago and I got awful cramps in my palm at nights (Doctors will tell you that DD is not painful,… ha ha)… I had a steroid injection. Cramps stopped. Wonderful.
One year later they started again. Another injection. This one ill-placed and deadly.
That was 30th April 2015 and I have regretted getting out of bed to go to my doctor’s most days since (though the cortisone did stop the painful cramps for a few months)…
That needle ‘hit something’. Hand specialists have assured my since that it must not have actually entered the nerve or my hand would be much worse. As it was it took 6 months for my hand to be restored to 95% ok as my thumb and forefinger were badly affected and pretty numb for some time. Only suggestion was, somewhat inexplicably, carpel tunnel surgery but if by this point I had carpel tunnel symptoms they were the result of the injection not the state of my wrist which has never troubled me !
I had 3 months, up to Xmas with everything working almost normally when I realised it was going wrong again, quite fast.
Hand surgeon repeated suggestion for invasive carpel tunnel surgery (??). I declined. Have since discovered that Depuytren’s is often activated by surgery / trauma and have concluded that that injection, a year ago now, did just that. It woke my Depuytren’s and it won’t go back to sleep again.
Thank goodness for the internet. I found a group on Facebook with lots of advice and info. They found me a radiotherapist. An oncologist.
Since I saw him a month ago my hand has got worse and worse and it now about 50% inoperative and it wakes me at night, quite a lot !. Bob is patiently handling my frustration and shortage of sleep irritability.
Today my lovely radiiotherapist measured my right hand and marked it up and on the 9th I have 5 days of radiotherapy.(on the wonderful NHS and I am Very lucky at it is not generally available).
It won’t cure but it will hopefully stop the disease in its tracks and a second 5 day dose 10 weeks later should catch anything missed first time.
So that is why I am quiet and my glass making is a little curtailed as of 2 weeks ago as my right hand grip has become compromised .
If you would like to cross a few fingers for me I would appreciate it as crossing my own is a bit tricky at the moment. This is not life threatening but it is life-style threatening so I would much prefer it if the treatment works.
Sorry this is a bit long but I think it is important to give this disease the attention it deserves. Apologies for typos but I now type without my right first or middle fingers !