Folksy Ltd

My Hand and Depuytren's Disease

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 :slight_smile:

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 !

Oh Joy, so sorry to hear that. I can sympathise, I lost the use of my right arm in my final year of uni. Wrong diagnoses, wrong treatments, etc, it is frightening and you were so right to keep investigating. I had the carpel tunnel suggested to me until they did the nerve conductivity tests that showed the messages were getting through my wrist, saved long and painful surgery that would have made things worse. Everything is crossed for you and the treatment is successful.

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Oh lovely Joy, I’m so very sorry to hear this, it must be so awful and frustrating for you. I’m keeping my fingers, toes and knitting needles crossed for you and hope things will get much better for you after the radiotherapy.

Sending you lots of love and best wishes

Natalie xxx

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Oh no, Joy, I’m really sorry to hear your news. I must admit I have missed you on the forum over the last few weeks but assumed it was because you were perhaps on holiday, not because of ill health. I’ve just been looking at the link you posted. I haven’t heard of this before but have seen people with hands that were obviously affected in this way - I’m afraid in my naivety I presumed it was severe arthritis, but I guess that’s not the case.
I will be thinking of you as you start your treatment and wish you all the best.
Take care, Di :bouquet:

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So sorry to hear about your news Joy.

I’ve not heard of Depuytrens Disease, but it sounds awful and the pain must be terrible.

I’m so glad you found support online. I’m always surprised how much help and guidance there is out there with others who share the same problems.

I hope all goes well with the treatment.

Hugs

Karen
X

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:frowning: oh no, Joy that’s not good. I’ve never heard about it either and I do hope things improve with the treatment.

So glad you did that research and found the group to help you get proper and correct treatment.

All the best and let us know how it goes.

I do hope you get more peaceful sleep.

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So sorry to hear about this Joy, hope the treatment goes well. Liz x

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Sorry to hear what a rotten blow you’ve been dealt and fingers crossed that the radiotherapy halts this disease for you. Be kind to yourself Joy. X

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Oh Joy, I do hope your treatment deals with the problems for you. How wonderful to have found someone who could suggest and implement a treatment other than invasive surgery for you. I can understand how frustrating it must be when your hands wont let you do the things you want to. I’ll be keeping fingers crossed for you.
Wishing you well. Lynn x

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All the best Joy - I hope the radiotherapy brings you some relief - I have heard of Depuytrens as it can also affect the feet (I am a chiropodist in my other life!), not heard of this course of treatment though but sounds far better than invasive surgery. Good luck.

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Hello Joy, I know we don’t really know each other on here but I have admired your beautiful work (especially over on FB where I don’t really go as much these days). I really hope that this treatment works for you and will be keeping my fingers crossed! Having read this I now have so much more admiration for you and your work. Wishing you the best of luck, Angela xx

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That sounds awful. I wish you all the best and hope the radiotherapy works. Got everything crossed for you!

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Wishing you all the best Joy. I know all about health threatening the thing you love to do most and it’s no fun. Fingers very firmly crossed for you. xx

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Good luck, having had a life style altering disease I know how gut wrenching it can be facing an uncertain future and not knowing what treatment will be on top of any suffering from symptoms. I ended up having radiotherapy too, the bit they didn’t warn me about was how long my skin would stay photo sensitive for post nuking, once you have finished treatment it might be worth getting an extra high factor sunblock for your hands so they don’t get burnt (should we ever get some sun).
Hopefully you’ll soon be back in the garage with your glass.
Sasha

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So sorry to hear this Joy. I’m glad you managed to find a helpful group that could point you in the direction of some treatment. I really hope it works for you and that we can continue to enjoy your wonderful glass creations.

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Really sorry to hear this Joy, I also hadn’t heard of this. Hope all goes well with the radiotherapy and I’ll also keep everything crossed.

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I used to be in a nurse in an orthopaedic theatre so have seen many people with Depuytren’s, it must be very difficult and frustrating for you. I hope the radiotherapy goes well.

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So sorry Joy and hope the treatment is successful and gives you some relief. I love your work and look forward to buying more in the future.
It is hard to get a diagnosis from GP I am having neck and back problems they just give me ibuprofen gel saying it’s age related wear and tear, think they have written me off.

Gill x

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Thank you, all of you for your support and lovely comments.
I’m very optimistic. Indications are that I’m having the treatment at the most beneficial time for it to be effective - while it is active and mine is positively aggressive.
Off now to make a piece of glass as “as long as I can I will”.
That could be my motto :slight_smile: :).
We already do our motorhoming on the basis “do it while you can”.

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I have ‘dormant’ Lederhose Disease in my right foot too. Not a problem as long as I leave it well alone / no injury or surgery allowed !. I