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:
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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