This is the talk given at the International Dupuytren Conference 2025 in behalf of patients and patient organisations.
The patient’s first port of call will be either a general practitioner or Dr Google. If patients can’t get a GP appointment or a definite diagnosis, Dr Google is a popular alternative.
If the patient consults Google, they will see scary pictures of bendy fingers and post operative wounds or scars, maybe even hands with fingers missing. They then turn to social media or a charity website.
After a GP diagnosis, the patient normally gets an NHS referral for musculoskeletal assessment
Whether the patient sees a therapist or a surgeon at an early stage, the advice will be: wait and see.
The patient feels bewildered and hurt. “Am I not important? Do I have to wait for my fingers to bend completely and become useless, and just HOPE it will be fixed with nasty surgery?”
So an unhappy patient turns to social media, Facebook and Reddit mainly.
Doctors normally want us to be pro-active
Go for walks or park runs, exercise, eat healthier
Have your vaccinations, yearly checkups and bloodtests, a weigh-in and bloodpressure check. Mammograms, cervical smears, prostate exams..
All meant to ward off the ageing process and stay healthy. Because that is what we do, this day and age.
And now the doctor says “Yes, you have a condition that may go bad, but you know what? Let’s just ignore it and wait until it has gone bad.”
This ‘benign neglect’ is not what the patient expects.
The patient starts looking into home remedies, natural healing, anything that may help.
Physical treatments. These include homemade splints, massage, the Dupuytren wand (available online, made by doctors so must be good).
Diet changes. Patients try low or no- carb, vegan, carnivore diet, cutting out gluten, processed foods, dairy, intermittend fasting..anything.
Supplements: magnesium, turmeric and Co-enzyme Q10 are some very popular ones.
Topical applications. There are a myriad, from ‘Dupuytrensco cream’ – developed by doctors, 91% allergen free – and with 23 different ‘active’ ingredients; to homemade mixtures of DMSO, CBD, castor oil, magnesium, and oils such as frankincense. Vicks Vaporub and Arnica gel are also popular.
Light treatments, laser, and ultrasound, some even buy their own machines for this.
Acupuncture, hypnosis, faith healing, grounding mats.. anything
I spend a lot of my time telling patients not to waste hope and money on things that fall in the ‘snake oil’ category
Patients want to learn more, so they look online, and they find our charity. We get 3-8 thousand hits every month at the moment.
Popular pages are ‘exercises after Dupuytren fasciectomy’ ‘Dupuytren risk factors’ and ’adjustments for living with Dupuytren’s disease’
The questions start. For instance: why did that doctor not seem interested in me? Because that is what ‘wait and see’ or ‘let’s operate if it gets really bad’ feels like to patients.
We explain why.
We also commiserate if the doctor came out with a hurtful or strange remark. Some doctors love patient shaming, and “you like a tipple don’t you” is a very hurtful thing for patients. I even had to talk to someone whose family went through the house looking for the ‘hidden bottles of alcohol’ afterwards because the surgeon had suggested mum was an alcoholic.
Saying ‘Oh you’ve got brown eyes so you won’t get a contracture’ is not helpful either, and doesn’t fill the patient with confidence.
And we say YES it can hurt.
We explain what is safe or not safe to use, how to look after hands and feet and try to minimise trauma to them (padded gloves for instance).
And finally we explain what may or may not happen, reassure that it may never get as bad as Bill Nighy, it may well skip one or two generations so chances are your children won’t get it. And we talk about research being done and how that gives us hope, if not for the present generation patients, then for the next one.
Common problems
Not all lumps are fibromas, not all bendy fingers are contractures. For anything atypical, the mantra is: see a good specialist! It is surprising how many people get told they have Dupuytrens when in fact it is something else.
The patient wants to get rid of the problem. If you remove the lump, you remove the disease? We explain about genetics, risk factors and timing of surgery, and that not everyone gets a contracture
And we explain that surgery may have side effects, so timing is important.
We also assure them that they didn’t ‘cause this’, it is bad luck to get Dupuytrens so don’t blame yourself, whatever anyone else says.
And finally: yes it can hurt. It may not be painful to the doctor, but patients can feel pain. You are not a hypochondriac!
Radiotherapy is our main, if not only, hope to slow the disease.
Some surgeons are not sure about it, so many patients only hear about radiation from other patients.
It can slow or stop the disease and postpone or even prevent the need for surgery. Many patients opt for radiotherapy to be proactive, and will go private if they have to.
Adalimumab is not available, and in the UK steroid injections are only used for painful nodules. So the only thing we have available that has medical evidence is radiotherapy, and maybe verapamil gel will become an option.
Our Dupuytren patient now needs to see a surgeon. The contracture has progressed. But who should they see?
We advise a qualified hand surgeon, preferably one with a special interest in Dupuytrens. They may well need this specialist multiple times in their life.
Not everyone offers needle fasciotomy, and not every surgeon offers skin grafts.
Our patient will have to search for a surgeon who can help them the way they want, and try to get referred to that particular person.
Patients help others find surgeons by sharing experiences, and we have lists and even a worldwide map with names of surgeons that are recommended by their peers or by patients.
Seeing the surgeon you want may mean travelling, and long waiting lists if the surgeon is popular. But for many patients that is worth it.
Sometimes patients can’t get the care they want.
Collagenase
Only available in the US still, since 2019.
Patients still ask for it, no matter where in the world they live.
If doctors websites have not been updated since 2019, patients think it is still available
We have to explain that it was taken off the market and why.
There is hope that a new collagenase will come on the market in the future.
Now our patient finds a lump in their foot. Another trip to the GP. And guess what?
Their GP doesn’t have a clue. And when the patient says “Could it be Ledderhose disease’, the GP has to ask Dr Google what Ledderhose is (my own experience).
Treatment options vary widely in different countries.
In the UK, you get referred to the NHS, and usually you are given insoles. Depending on the expertise of the podiatrist, they can cause even more pain than Ledderhose already does.
Other NHS treatments are potluck: shockwave, surgery, steroid injections, one centre offers hyaluronidase injections.
In some areas, radiotherapy is offered.
Verapamil compounded gel is at the moment available from one UK pharmacy, private only. But there are signs that it might be easier available in the UK in the near future.
If a patient was born with a penis and still has it, they could also get Peyronie’s disease.
We don’t get many people asking for help with the condition.
We do have a list of specialised andrologists in the UK
Even the special Peyronie’s patient group we set up is not very active. I can understand the reluctance, but it is a shame as peer support can be so helpful, especially in dealing with the emotional and relationship problems Peyronie’s can cause.
The unhappy patient
Most cases are due to a lack of information or misinformation.
Patients feel brushed off if they are sent away. Offer a 1 year follow up, MSK or virtual.
Mentioning alcohol abuse or the brown eyes thing, or ‘but you don’t work anymore so your hands aren’t that important’ feels uncaring and ignorant. Hands are important.
Don’t dismiss the patient’s pain.
If you don’t want to operate unless the patient stops smoking, explain why! Patients know smoking is bad for the lungs, but not many know that smoking can cause problems with wound healing.
If referral is going to take months or even years, the patient won’t be happy. Offering PNF can mean a shorter waiting time, while still giving the patient a useful finger or hand.
Expecting too much from surgery and not being aware of the real recovery time, size of the wound and the therapy needed after surgery are important factors.
Are opioids really needed for afterpain??
Adverse reactions to surgery. CRPS, nerve damage, infections.. Can’t be avoided but Patients need to know when and how to contact the clinic.
Some surgeons don’t believe hand therapy will make a difference. I don’t know why, as to me it is vital after major hand surgery. Please refer your patient for this, hand therapists can do so much good helping to regain normal sensation and movement, and deal with swelling and wound care. If a patient has problems after surgery, and another patient says ‘but didn’t you see a hand therapist?’, you can imagine their reaction if they weren’t advised about seeing one.
Recurrence or extension of the disease can make the patient unhappy. Minimally invasive surgery causing the least amount of trauma necessary, if required a skin graft, and sometimes radiotherapy after surgery can all lower the risk of recurrence or new disease showing up.
Be honest, tell the patient what might happen!
Ideally, we would like a cure. That may not be feasible in the foreseeable future.
But we hope for a biomarker that can tell when to treat because the disease is active and if treatment is working.
And a medical treatment that slows active disease or reverses contractures would be great.
Ideal would be a simple tablet, but regular injections or a transdermal patch would be great as well.
Thank you
