Has anyone discussed full thickness skin grafts with you? There are a few people here who have had multiple skin grafts for aggressive disease and have been pleased with the results. There is a video on youtube from the Dupuytrens Symposium 2010 by Dr. Lynn Ketchum where the procedure is described and the success rates discussed. They do encounter disease extension after grafting but one of the patients showcased had all four fingers done in one operation, which seemed to do the trick for him. I have aggressive disease but it's quite tame compared to what you've been dealing with. I hope you find someone who can help.

Hello,

This is a great forum for information. I am so grateful for its contribution. It is also a genuinely compassionate forum that really tries to help all members in the best way possible. However, we got got a contribution recently from a young female who so bravely presented her situation to us in an open an honest manner - and yet she has had no response at all; except for my very inadequate comments. This young girl has given herself the handle 'give me a hand' and yet we did not attempt to give her a hand ( a Tabhair dom do Lámh)!

Is there anything constructive that we can offer?

Humbled,

Lanod

PS - here is her original submission:

Hi all-

First off, I am a 24/F with Dupuytren's and Ehlers-Danlos Syndrome (Hypermobility). I have been symptomatic in my right hand since I was 13 (first tendon release/nodule removal, middle finger MCP joint), with a tentative diagnosis at 17 (repeat release, nodule removal, MCP joint, middle finger), and an definitive diagnosis by another doctor at 22 (tendon release, nodule removal ring finger of right hand) when, six weeks after surgery, the DD reared it's ugly head hard and fast with a chord and a new nodule in the same location.

After failed steroid injections that aggravated the condition further, I decided to seek somewhat alternative treatment and went ahead with 2X weeks of RT down in Los Angeles, CA in April 2012.

The RT covered all of my hand (ct determined involvement in my middle, ring, and pinky fingers) up to the PIP joint, I believe.

For nearly a year, I (and my doctors) believed that the radiation had slowed the progression of the disease (which has since been determined to be the more aggressive form of DD), but it has become clear in the last several months that my disease is again progressing with new nodules in my middle and ring fingers.


I have both a rheumatologist (He's amazing and I see him for both the DD and the hypermobility syndrome) and a orthopedic hand specialist (who I wouldn't recommend to anyone actually trying to seek constructive medical advice) at USC Keck Medical Hospital in Los Angeles.


Every physician I have seen has said I am probably one of the youngest patients to experience symptoms of this disease (starting at 13) in at least the state (CA).

I am dominantly right-handed

Dx'd as stage 4 in right hand ring MCP and pinky PIP (Garrod's pad on my ring finger, only one for now ...).

My father, paternal grandmother, and uncle all have DD in some stage (grandmother passed away in '96 and suffered with a severe case at the time of her death).

My left hand seems to be edging on symptomatic- concerning because I am a reporter for a newspaper and a writer in my waking life, so hands are my money makers.

My questions are as follows:

1. Is there any corollary (whether anecdotal or research based) between Ehlers-Danlos and DD that anyone here knows of? They seem counter-indicated, given that EDS makes all my major joints hyper-flexible and prone to painful over extension, and DD makes my small hand joints look and feel like broken 2X4s in a Home Depot salvage lot.

2. I have been told by 4 specialists and my GP in the last 4 months that NOTHING conventional is available to me and that the sad truth is that amputation is inevitable if I keep progressing with surgery. No one covered under my insurance is willing to remove my fascia or pursue that course of surgery. Part of the problem, as I understand it, is that I am very young and this disease in its most aggressive form will only get worse with time. NA/Xiaflex are off the table due to how easily inflamed my condition is (according to specialists I have seen). To make matters worse, I am probably beginning to experience some post-RT nerve damage that is extremely painful. Two local acupuncturists have even turned me down because the success rate is so low. Massage did little except aggravate the condition. I have splinted 24/7 for months and it was unsuccessful. Best the rheum could offer was some very sincere sympathies, OT hand clinic again, and a note for the insurance to cover voice recognition technology. Lack of function is disappointing, but unchecked and aggressive pain is maddening without solutions (and I personally don't feel long term narcotic prescriptions are a solution). I take the prescription NSAID diclofenac 75mg twice a day, but is there anything anyone can recommend apart from the things I have listed to aid in the diminishment of my physical pain?

3. Is anyone familiar with physicians within California that are used to treating Diathesis or more aggressive versions of DD in young people? Any names and specifics would be greatly appreciated.


I'm pretty level-headed and open-minded. I believe most of my doctors are doing their absolute best to help me, but I cannot function like this for (hopefully) another sixty years. Hopefully I haven't driven anyone away with that wall of text. Thanks so much for all the help and hope you guys provide.

I had surgery on a 90 degree plus little finger and had excellent results (no contraction 12 years later). There was very little pain with the procedure and recovery. The fellow who was the technician for my RT had a similar surgery 21 years ago and his finger showed no signs of Dupuytren's after all this time.

Don't let your hand get too bad before you do something. No need for the amputation talk.

To Givemeahand,

Like the response above mine, I really hope to hear from you. Like others, I empathize with your situation. I know how desperate I feel at age 73 as the disease begins to cripple me, how anxious I feel about the future, the next 20 years as my capabilities diminish, as it gets more and more difficult to type, to hold things, to manage the business of daily life. It's difficult to imagine how hard that would be at your age. There are some great books by and about people with extremely serious disabilities, amputations, deformities, people who manage even so to be productive, spiritually alive and well. I wish that for you, and for all the rest of us too.

Wishing you all the best,
Peacefulbird
Washington state, USA
right hand DD, onset Oct. 2015