Welcome to the Ledderhose disease (plantar fibroma) blog.

My name is Gary and I am the author of this blog. I am a ledderhose patient from the UK. I am an ex-scientist and hold a degree in Molecular Genetics and I try and put this experience to good use exploring this condition.

I have pages here about the treatment options, patient experiences including my own, insights from medical professionals, explanations of the science and whatever else I think may be useful for fellow patients. Through the blog I have made contacts with many patients, professionals and charities and now work as a trustee for the British Dupuytren's Society.

Hopefully you can find the pages you want using the navigation menu above or use the search box to look for specific information.

Hope you enjoy reading the blog and please contact me at ledderhosedisease@gmail.com or leave a message on here to get in touch. All information will be kept private unless you tell me otherwise.

Thank you for visiting.

Thursday, 24 July 2014

Interview: Ledderhose surgery patient from Ohio

Today I have a patient interview with a Surgery patient from the States. 

1) Where are you from? 

I am from Ohio USA

2) Do you have Ledderhose and Dupuytren's?, How long have you had them? 

I am a 49 year old woman and I have both Ledderhose and Dupuytren's. I have Ledderhose on both feet. I have had Ledderhose since I was an infant. My Mother first noticed the nodule on my left foot when I was less than a year old. She doesn't remember more specifically how old I was. So in answer to the question I have had Ledderhose for 48 years. It wasn't until much later that I noticed the nodule on the right foot. I have only had that one for about 8 years. I have only had Dupuytren's for about 6 years.

3) Do you have a family history of this condition? 

As far as I can find I have Absolutely NO family history.

4) How did you find the medical awareness of these conditions? 

Most of what I know about both conditions I have learned on the internet. The surgeon that removed the first nodule is the one that told me what it was called. I didn't get much information from him but I was only 16 and don't really remember much detail from the experience.

5) You had surgery, were you made aware of the risks of having this?

Yes, I have had surgery twice on the left foot. I was only told that it could come back. I was not told much else.

6) What condition were you in when you had the surgery? 

Looking back, I wasn't in bad condition at all. Knowing what I know now I would not have had the surgery then. The condition was stabilized and it had not grown for years. I was involved in things in high school that was most likely putting more stress on the foot and causing it to hurt more. 

7) Could you please describe the surgery process and recovery? 

The first time I had surgery (both surgeries were on the left foot) the incision was only about an inch long (twice the length of the nodule) and went across the width of the foot. They only removed the nodule and the surgery only took about 40 minutes. The time on crutches after the surgery was about 2 weeks. The second surgery was was about 5 years later and the foot had become very painful. Mostly because of the scar tissue from the first surgery but I also had a new nodule. The incision for that surgery was lengthwise of the foot and was approximately 5 inches in length and slightly curved in an "S" shape. They removed the new nodule that was about the same size as the first one. They also removed scar tissue about 1 1/2 x 1 x 1/4 inches. The surgery took about 70 minutes and had the same recovery period of 2 weeks on crutches.

8) How successful would you say the surgery has been? 

I am convinced that the first surgery only made things worse. I am also glad I had the second because I am sure if the nodule grew much more I would not have been able to be on my feet much at all. The second surgery didn't result in the large scar tissue formation like the first. Although in the 26 years since the second surgery I have another nodule and it is twice the size of the ones removed. 

9) What other treatment options are you looking into?

I am very interested in the Radiotherapy that has been discussed. I would like to know more about it and where it is offered in the United States. 

9) Is there anything else you would like to share with the patient community?

Picture on the left is the left foot. This is the one I have had two surgeries on. This nodule is about  26 years old. Picture on the right is the right foot. No surgeries. Nodule is about 8 years old.

Picture on the left is left hand. Not as noticeable since the nodules aren't as large as the foot but you can see that I have a pit of some sort. 

The picture on the right is also the left hand but the hand is turned sideways so you can see a bit more of how large the area is. The first nodule in the hand was noticed 5 years ago. Thankfully the right hand seems to be free of any nodules at this time.

Friday, 18 July 2014

Patient Survey

I am happy to announce that in association with the International Dupuytren's Society and the British Dupuytren's society we are running a patient survey. 

The aim of this survey is to collect as much information as we can on patient experiences with different treatment options for Dupuytren's and Ledderhose and to see whether, as some examples: 

  • We can confirm the increased risk seen in those that drink 2+glasses of wine a day (see Lanting et al, 2012). 
  • See what age people develop Dupuytren's / Ledderhose and is this age younger in those with a family history. 
  • Are patients happy with the treatments they have been given? 
That is just some of the useful questions that we hope to be able to add some patient data to, however we can only do this if we have a good turn out, I would ideally like a joint response (from DD and LD patients) of around 1000, this is a lot to ask but these are the sort of numbers that are used in medical publications and it would be great to be able to compare our numbers to theirs. 

Importantly, here is the survey link