Thursday, 30 August 2012

Ledderhose patient interview

Today I am posting an interview with another Ledderhose patient. This is someone who contacted me through the e-mail address that I provide on this blog. They have shared their story with me and below are some details to share with everyone. When you look over his case and that of all the people I have looked at it is very clear that this condition takes very different paths in different people and who knows if this is due to different causative factors or just different genetics or just environmental differences. Anyway have a read below and see what you think: 

1) Do you have Ledderhose disease and any of the related conditions and do you have any family history of them?

YES - I have LD and I also had an episode with a frozen shoulder in 2005. I see from notes I made there may have been a slight thickening of cords observed on my left hand around this time but no Dupuytrens has become apparent.  I do suffer with 'White Finger' in cold weather even though I have not done manual work for a living. 

2) How long ago did you develop Ledderhose and how old were you and how were you diagnosed? Do you feel that there was a specific or group of trauma events that may have contributed to you developing Ledderhose?

About 8 years ago when I was 50 a small lump formed in the arch of my left foot. I thought at first it was a ganglion cyst and faced with an 18 month waiting list to be seen by an NHS orthopedic surgeon I opted to  see the surgeon privately. I was informed that the condition was Ledderhose disease and more could be found about it on the web. As the condition was not causing pain I was advised not to have surgery but to return should problems develop. He also looked at my hands for signs of dupuytrens -there weren't any. In time I was seen under the NHS and had several sessions at yearly intervals to monitor the situation. Eventually I was told unless I required surgery there was no point continuing to attend as it can take many years for the condition to progress (if at all).
I believe the problem was caused by cycling which I took up at @ 44 years of age (6 years later the first lump appeared).At that time I did not wear proper firm cycling shoes and I believe this caused trauma to the tissues of my feet. Not long after I found  3 then smaller lumps had developed on the right foot.

3) What treatment options have you had and what options have you considered?

I have not sought/received treatment options. All I was offered was surgery,  then only if the condition became painful.  Around 2005 I was considering using Trandermil Verapamil but did not take it up. I have not read about there being much success with this product treating LD albeit some other connective tissue conditions are said to benefit. 

4) I believe I am correct in saying you have been looking into this for a while what are your top 5 links for this condition?

I will send you details in a separate email. My research took place @ 2004/2005/2006.
It then turned to research about prostate cancer.

Here are the links from that e-mail:

These used to do a ledderhose/dupuytrens forum - but not nowadays

A german site that was very much into researching the causes

You will probly be familiar with this one.

A bit about Gilberts Syndrome with some further links contained.

5) What is the biggest problem that you have encountered with this condition? 

I think the biggest problem is being afraid to undertake cycling due to fear of causing further damage to the feet. I do a lot of walking which appears to be beneficial but cycling puts a much greater load on the feet (it is rather hilly where I live!).

My feet used to hurt/burn when I stood around a lot. This does not seem so bad now. Some days I get discomfort if doing jobs which keep me on my feet (e.g. washing the car). I find I need to wear heavy boots for DIY and standing on ladders. 

I was also sent some documents by this person and a couple of these seem very interesting and I may well post about them in the  coming weeks. There is also this paper which I will look to analyse pretty soon.

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