Tim Jones, an engineer living with Dupuytren’s contracture, explains how this hand condition affects his daily life and how he talks about it with his family.
Dupuytren’s contracture (palmar fibromatosis) is a chronic condition that affects the connective tissue in the palm of the hand. Over time, this tissue thickens and tightens, pulling one or more fingers toward the palm so they can’t fully straighten.
The symptoms get more severe over time and can affect a person’s ability to do certain activities, such as grasping objects or putting a hand flat on a table.
Tim Jones is a 60-year-old engineer who lives with his family in Los Angeles, California. He was diagnosed with Dupuytren’s contracture 19 years ago. Tim also has type 1 diabetes and Ledderhose disease (plantar fibromatosis), which affects the connective tissues in his feet. Conditions like Dupuytren’s contracture and Ledderhose disease tend to be more common in people with diabetes.
Healthline spoke with Tim about what it’s like to live with Dupuytren’s contracture and how he talks about this condition with family and others. Here’s what he told us.
This interview has been edited for brevity, length, and clarity.
I started having problems with my hands when I was 41. At first, I thought I had some sort of tendon problem, but I went to a hand specialist, who diagnosed me with Dupuytren’s contracture.
I’ve had a slow burn into it. It started as just something I noticed, and as the years went on, it became something I had to manage a little more. Maybe 7 or 8 years into it, it started to interfere with day-to-day things.
Then, in 2019, I developed contractures in my feet, which were always more problematic for me. I walk a lot. I used to be a runner, but I had to give that up.
I have grip issues because the contractures sort of prevent the motion of my fingers. I don’t have a really severe version of it, but my fingers are stiff, and I can’t grab things as easily. It’s like the contractures are spring-loaded, so I have to fight against them.
Even though I have it in both hands, it’s much more severe in my left hand, so I have to grab things with my right hand very differently from how I do with my left. That’s just something I’ve had to learn over the years of experiencing it.
I have to learn by doing! How to hold things, how to adjust my grip, and how my thumb is going to spring back when I let go. That’s not a natural thing people would ever be used to, unless they’ve experienced it.
There’s an inclination to act like it’s not hurting or it’s not affecting you, and I don’t think that’s a good strategy. For whatever reason, a lot of people do that, and then you end up doing things that can cause you pain and problems.
I think it’s easier to be upfront and say, ‘You know what? My hands are really hurting today, so I’m not going to be able to do this, or maybe, I’m not going to do as much of it.’
Mostly, I don’t feel like I’m really limited. I just have to find adaptations for things I do with my hands and feet.
But sometimes, my hands or my feet just hurt too much to do something, and I might have to cancel. And that can be disappointing, when it seems like, ‘hey, you just went on a five-mile walk, and now suddenly you can’t do this thing that I want to do.’ I think that’s the hard part for people to wrap their heads around.
The pain comes and goes, and it can be difficult to understand that sometimes I just need to rest my hands and feet. We’re a family that talks a lot, and it can be sort of a letdown, even though they understand.
I’ve met quite a few people with Dupuytren’s contracture in their hands. I’ve met them through type 1 diabetes groups that I’m involved in. I do a type 1 diabetes hiking group and volunteer for Type One Nation and Beyond Type 1, and because diabetes is a risk factor for Dupuytren’s, there are people I meet who have it.
It comes up quite often. How do I manage my diabetes? And guess what, I also have this other problem.
When you’re with others who have the same condition, it’s really helpful to talk about what you’re doing, what I’m doing, and how we can try this and try that. We’re able to sit around and talk about how we can keep going.
That’s my way through it: Finding a way to keep going, keep doing things, adapt, and move on, instead of throwing up my hands and saying, ‘I can’t do it anymore.’
I understand there are varying levels of severity, but in my experience, there are ways to adapt. It takes a little bit of research, a little bit of trying different things, and not giving up.
I would suggest to anybody who has this, find another way rather than giving up.
Tim Jones is a 60-year-old field service engineer in the biotech industry who was diagnosed with Dupuytren’s contracture in both hands about 19 years ago, Ledderhose disease in his feet about 7 years ago, and type 1 diabetes 49 years ago. He still regularly enjoys hiking and walking.
Tim Jones is a 60-year-old field service engineer in the biotech industry who was diagnosed with Dupuytren’s contracture in both hands about 19 years ago, Ledderhose disease in his feet about 7 years ago, and type 1 diabetes 49 years ago. He still regularly enjoys hiking and walking.