These are my hands. They haven’t always been like this but my mother’s were, in her later years, and at the time I really didn’t understand the implications. Somehow, I managed to believe that not uncurling her fingers was almost wilful and that she could if she really wanted to. Now I know she couldn’t. See the tiny nodules and pads on my right hand, white against pink? They’re quite new, the disease is active. See my left hand? If I fell off a cliff I could dangle from that pinky for hours because it doesn’t move and nor would it hurt. Left to my fate, I would eventually be a skeleton held defiantly and comedically in place by just that one finger.

The cause is over-enthusiastic connective tissue which first forms nodules, usually in the hands but sometimes in the feet where it’s called Ledderhose. These nodules gradually expand to form cords, and the cords tighten over time like a pulled thread in your best sweater, dragging the finger down into the palm. What causes the nodules and the cords though is anyone’s guess. There are indications of an autoimmune component with a genetic predisposition linked to north European heritage.

Treatment includes using a needle to disrupt the cords (needle fasciotomy), collagenase injection (an enzyme that dissolves the affected tissue), open surgery, and in some instances, radiotherapy.  For many people – maybe most, the results are temporary. This disease won’t be messed with. Upset it and it’s back with a vengeance ready to make you stick your finger in your eye when you wash your face, turn putting on gloves into a wrestling match, and leave you with a two-finger salute you never intended. Right-handers struggle with handshakes – do they avoid them and risk seeming stand-offish, or carry on regardless and hope the weird finger-in-the-other-person’s-palm thing doesn’t freak them out? Mugs are hard to hold, anything you aim a grab at can be knocked away by the curled-in digits before the remaining ones have got a grip, your typing skills go AWOL, and just try applying sunscreen, shampoo, or moisturiser.

There is no cure.

On the positive side, it isn’t life threatening, it doesn’t seem to affect any other body part (but cf feet), and give or take the inconveniences of grip and grasp, it’s hardly on the map when it comes to disabling conditions. Or is it?

Professionally, for me it wasn’t a problem beyond the fact that I couldn’t use a mouse so had a graphics pad installed on my computer. This was fine until hot-desking became a thing and, reminiscent of my own failure to appreciate my mother’s problems, managers serially failed to grasp that I couldn’t, well, grasp and needed a dedicated PC.

But what about other professions where hands are critical? I’ve heard of musicians having to give up playing, a physiotherapist unable any more to apply therapeutic manoeuvers, a vet who found himself without the rounded full-palmed touch he needed both for diagnosis and making an animal feel safely held. There is research but it isn’t very high profile and more participants are needed.

So here’s the question: if you have Dupuytren’s and you’ve had to give up your work or something else important to you, would you warn your children about it, suggest they choose a different profession or interest, one that wouldn’t be affected if it turned out they had the condition? Or would you let them follow their dreams and then wish you hadn’t if they had to give it all up because of some rogue tissue not enough people were interested to help figure out how to stop? If even a smidgen of that is a ‘yes’, then please consider contacting your professional body if you have one, and asking how many of its members are affected and how many have had to give up or reduce their professional activity as a result. Let me know what you discover and I’ll see what can be done with those data by way of raising the profile of the condition and making it a meaningful thing to people it doesn’t (yet) concern.

Please also consider becoming involved with research towards understanding more about this ridiculous disease and eventually putting it back in its box.

This is the UK register.

This is the British Dupuytren’s Society.

This is the International Dupuytren Society

This is the Dupuytren’s Disease Support Group on Facebook

[edited 24th April to add International Dupuytren Society link]