Friday, 5 July 2013

Interview with Seph, dual Dupuytren's and Ledderhose surgery patient

Today I have an interview with Seph from the IDS forum who kindly agreed to share her experience with these conditions. One of the few Ledderhose surgery patients who has not had a horrific experience. 

1) Do you have Dupuytren's, Ledderhose or both? How long have you had there conditions and what was your age when diagnosed? 

I have Dupuytren's and Ledderhose. Both bilateral. I first developed LD in my left foot in my early teens. I may have been as young as 10 as I'm sure when it first started but I know I was at junior school. Right foot developed LD in my late teens followed by my left hand and then my right hand in my early 30's. I am now 59. It may be worth noting that I did not know what the issue was or that the feet and hand issues were related until it was properly diagnosed when I was 33

2) Where do you live and do you have a family history of the disease?

I was born and grew up in New Zealand but have lived in Australia for the past 25 years. My family heritage is a mixture of Welsh and Scottish with a few Englishmen thrown in. Father had what I now know was DD in one hand, one of two brothers has LD in one foot and one of two sisters DD in one hand. I am not aware of any other relatives with the disease but I haven't seen any of my cousins in years so I wouldn't know if they have developed the disease

3) Would you consider yourself to be at risk based on any of the other risk factors commonly associated with these conditions?

I drink wine with dinner nearly every day but that doesn't account for the disease starting in junior school. I have some liver damage caused by a bout of Hepatitis A when I was 6/7. I sometimes wonder if this mimicked the effects of alcoholism and acted as the trigger for me. A few years back I developed bilateral frozen shoulder. My father who was skinny developed diabetes in his 60's and my mother who was obese developed it in her 70's. I am a candidate but don't have it yet and am trying to fend it off through an aggressive Gym and sport program (Gym 3-4 times a week with heavy weights plus tennis 3 times per week)

4) What treatments have you received for

a) Dupuytren's

I had surgery on my left hand when I was 35. It should be noted that the DD in my right hand appeared a couple of years after the surgery on my left hand. No signs off DD in my right hand prior to then. I had NA from Dr Badois in Paris on both hands April 2009 and again on my right hand December 2009. Last year I had NA done by Dr Manet-Chopin in Paris on both hand and she will treat my right hand again next month.

b) Ledderhose

Surgery when I was 13/14 since then nothing.

5) How successful were these treatments?

Surgery on my foot did not cause me any problems but the disease returned within months with a broader mass and I wonder if it was the trigger for the disease popping up on my left foot. Surgery on my left hand was moderately successful but I wonder if it was the trigger for the disease then popping up on my right hand. Each time I get NA done I seem to get an immediate burst of DD activity then it settles down again so I get it done again where the action starts and I am right then for a couple of years. I am troubled that of late I am developing a lot more nodules on the palms of my hands and I am wondering if this is triggered by the NA

6) You were treated a while ago, if you were to get treated now would you take the same treatment option? And why?

If I could return I would not have the surgery and I would not have waited so long before starting NA. The surgery achieved nothing other than a temporary fix with the scar tissue limiting my future options. Because I waited too long NA was not able to straighten my little finger on my right hand and surgery did not straighten it on my left hand

I do not agree with the people that advocate protecting hands and wearing soft shoes etc. I have found that by pushing through the skin toughens and the nodules settle down. On my feet I went through years where blisters would form in the arches of my feet where the lumps rubbed but the skin did toughen and the pain went away - now no problems. With my hand no special treatment but I have had to thicken the grip on my tennis racquet to avoid cramp caused by DD and in the gym I do now where gloves a lot of the time to reduce the rubbing on new nodules.