Welcome

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, 23 October 2014

Patient series - Patient 2 Introduction

Today I have an introduction to the second patient on my patient series. 

Initial Background Questions:

Please state your age, gender, country of origin and where you live (if different to origin) and how long you have had the condition?

I'm 54 years old, a female, and from Toronto, Ontario, Canada.  My mother's father was from Scotland.  I noticed a bump on one foot about 5 months ago and they have only started to grow and become painful in the last three weeks.  I did a half marathon on September 29th and my feet were very sensitive after that race which was new for me.

Do you have it in both feet or any hands?

I have it in both feet.  I had an ultra sound done and I currently have one medium sized one on my left foot and three small ones on my left foot.  They are currently growing and are mildly painful when sitting. 

Please detail any family history or common risk factors which apply to you:

My mother has Dupuytren's Disease in both hands as did her sister and her mother.

Please list any treatments you have had, the time since you had them, the progress (or lack of) after treatment and any side effects:

I've only had an ultra sound done so far but I'm seeing a Podiatrist on November 18th who I know has ordered Transdermal Verapamil 15% gel for two of his other clients.  I'll find out from him if the other two clients have had any success with it to decide if I should try it as well.  Because they're mildly painful when sitting I'm worried they will progress from there so I will be looking to have Radio Therapy done and am investigating whether Canada actually has someone that does it or not.

Please detail any other information from your past which you think may be relevant and not covered in the monthly questions:

N/A

Monthly Questions:

1.   In the last month have you noticed any changes in the pain or size of the nodules? Or have any new nodules have developed? 
I started out with one nodule on my right foot and now have three which have grown in the last three weeks.  The one on my left foot has been growing as well.

2.   Please list a) The maximum pain b) the average pain c) the minimum pain you experienced this month and anything that improved or worsened the pain.
I'm still at the minimum pain stage and have only been using Advil to control it.

3.   In the last month what medication or treatments have you had, please describe in as much detail as possible including whether prescribed or home treatment, if applicable where the treatment was administered, by whom, cost (if happy to share) and how this has impacted the condition. 
Nothing at this point but hope to start something.

4.   Please describe how the condition has impacted you on a daily basis in the last month and any new steps (not treatments) that you have taken to try and alleviate this impact.
I was a co-founder of a walking group where we train 3 times a week so this has very much impacted my life.  Aside from staying off my feet there isn't anything else I can do at this point. 

5.   Please describe the level of exercise that you have been able to achieve this month and any specific diets you have used if you think they have impacted the condition. 
I've been doing Plantar Fasciitis exercises and they seem to be help.  I'm also working with my training to find exercises I can do that won't bother my feet.  I plan on starting to swim.

6.   Please list any other information that you think would be useful. 
 Sorry I don't have any at this point.
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Wednesday, 22 October 2014

Patient series - Patient 1 Introduction

This is the first post on the monthly patient series that I am going to be doing. I have a group of patients that have agreed to answer a set of questions for me every month with the aim of giving a wider overview of patient experiences with this condition. 

Each patient will have an introduction post and the monthly updates will all be delivered together as one post. This is the first introduction post: 

Please note that their first language is not English and I have tried to correct any errors but not changed the content of the post. 

Initial Background Questions:

Please state your age, gender, country of origin and where you live (if different to origin) and how long you have had the condition?

I am a 45 year old male. I was born in the south-west of Holland, where I still live. I have ledderhose from the age of 10

Do you have it in both feet or any hands?

I have it on both feet and hands. I also have knuckle pads. It started on the age of 10, when I stepped into a nail.

Please detail any family history or common risk factors which apply to you:

My father has Dupuytren on one hand. It started when he was 12 when he got a snowball (with a stone in it) on his little finger. His sister also has got Dupuytren. I do not smoke, drink 1 or 2 glasses of alcohol a week and do not have diabetes.

Please list any treatments you have had, the time since you had them, the progress (or lack of) after treatment and any side effects:

  • 1979    First lump under my right foot after stepping in a nail in the middle of the plantar fascia
  • 1979    First removal of a lump under my right foot.The lump was back in three months. Not very painful, was roller-skating after a month.
  • 1985    Second removal of the lump under my right foot. The lump was back in three months.
  • 1995    Third removal of the lump under my right foot. The lump was back in three months. A nerve was damaged during the operation. I had a lot of pain and problems with walking.
  • 1996    Fourth removal of the lump under my right foot. They removed a big part of the fascia plantar and the nerves of two toes. After 6 month of therapy I could walk normal     again without much pain.
  • 2000    There is a small lump under my left foot
  • 2010    My little finger from my right hand is contracting, there are nodules
  • 2010 The lump under my left foot is growing. I have problems with walking. A podiatrist made orthotics for the lump under my left foot.
  • 2011    Partial fasciectomy on my right hand with the use of fire-breaks. Had a lot of edema in my fingers and had to use a pressure glove for several month. During the night I had to sleep with a plastic brace for half a year. The first lump was back after 2-3 months. After 4-5 months my hand was fully operational. I had no pain after using it.
  • 2011 and 2012 I received three injections with corticosteroids in the biggest lump under my left foot. After the first two injections the lump shrank for two to three month. After six month the lump started to grow. After the third injection I had a big bruise under my foot. Walking was very painful. Could only walk on running shoes. I used a special band-aid for under my foot to distribute the pressure. Could not walk far without the band-aid, with band-aid for 30 minutes.
  • 2013   My little finger from my left hand is contracting, there are nodules
  • 2014  Had a needle fasciotomie on my left hand. After 10 days with a cast arm they started with therapy. Recovery was slow. Lump was back in a month. Could use my hand without pain after 5 month. Sometimes still painfulCouldn't sleep with the plastic brace because of the pain.
  • 2014 (June) a nerve in my right hand is giving a tingling feeling. After a day work my hand is beating.
  • 2014 had a fasciectomy on my right hand. After 14 days they removed the stitches and started with hand therapy. Have to sleep with a brace during the night. When my hand is tired during the day I may use the brace for 30 – 90 minutes. Under my left foot I have four lumps. The biggest one is 8 x 5 cm and 1 cm high, the smallest one has the size of a pea.

Please detail any other information from your past which you think may be relevant and not covered in the monthly questions:

The doctor of the Erasmus MC offered to remove the Plantar fascia of my right foot, and use a muscle of my leg to make a new plantar fascia. I think my lumps are to big to use RT, also the health insurance company’s don’t pay for this treatment.

Monthly Questions:

1. In the last month have you noticed any changes in the pain or size of the nodules? Or have any new nodules have developed? 

I feel a nodule in my right hand. The nodule in my left hand is growing. Under my left feet the lumps are growing slowly. I have more pain in my left hand, because I have to use it more after the separation of my right hand. Walking more than 30-45 minutes is painful, can’t stand still for more than 2 hours. On a bad day every step is painful.

2. Please list a) The maximum pain b) the average pain c) the minimum pain you experienced this month and anything that improved or worsened the pain.

On a scale from 0 –10 the maximum pain is 8, minimum is 0-1. The average is 4-5

3. In the last month what medication or treatments have you had, please describe in as much detail as possible including whether prescribed or home treatment, if applicable where the treatment was administered, by whom, cost (if happy to share) and how this has impacted the condition

On the 29th of September the doctor performed a fasciectomy on my right hand in the Erasmus MC, Rotterdam (Holland). I used a mitella for 5 days.  After 14 days they removed 17 stitches and hand therapy was started. I have to practice 5 times a day and received a plastic brace to sleep with. I went to work(office) for half a day 16 days after  the treatment. Pain is getting less. The health insurance company paid for the treatment.

4. Please describe how the condition has impacted you on a daily basis in the last month and any new steps (not treatments) that you have taken to try and alleviate this impact.


I am right handed so the impact is big. Still can’t lift things or unscrew jars with my right hand. Life
is in first gear at the moment.


5. Please describe the level of exercise that you have been able to achieve this month and any specific diets you have used if you think they have impacted the condition.


Went for a walk each day. After 30-45 min walking is painful. Do exercises with balloons with my right hand, the putty is still to difficult/painful.


6. Please list any other information that you think would be useful.

N/A