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.

Sunday, 28 December 2014

A Summary of 2014...

Seeing as it is almost the of the year I thought it would be a good time to do a review of the year, both from my personal point of view and from what has happened with the blog and other related events.

To start with is the more personal side of things, followed by the blog stuff, so scroll down if that is what you are interested in.

Running: 
November last year I ran a 10k and picked up an injury, then Christmas, chest infections, moving house and life got in the way. Over the last 4 months my wife and I have picked this back and up and are again running 3 times a week for 30 minutes and I am pushing the buggy. My foot is still not hurting from doing this and I am still so grateful for how well the radiotherapy worked.

Badminton Coaching: 
At the end of last year I passed my final badminton coaching exam and I am now a fully qualified coach. I am trying to build up the amount that I am doing but normally manage to at least do 4 hours a week. A lot of that time I also spend playing and although my foot is sometimes sensitive afterwards but it never really hurts for long.

House:
This was probably the major event of the year, this year we moved house. This has made a massive different to our lives and it seems like we have been in the house for such a long time.



Mini Manley Bakery: 
My wife started her business after we moved as she now had the spaced required. Her skills have come on leaps and bounds in the last 6 months and her cakes look amazing (see below), I hope the business takes off as she has worked so hard on trying to make her dream a reality.



Feel free to check out her website and blog.

The Mini Manley: 
This year my daughter has grown up so much it is crazy, she walks, talks, sings, signs, asks for cuddles and gives kisses. Seeing her grow up is a wonderful thing and much more enjoyable with the use of my feet. She has already had a taste of badminton after grabbing a racket so perhaps I can combined my love for her and badminton in the future.




My Nan: 
One of the biggest things this year was the passing of my Nan due to pancreatic cancer, it was was quick and a shock for the whole family. She is going to be greatly missed, especially over Christmas and I expressed all of that in my memorial post.



The blog: 

The blog is something that my Nan was proud of and I am hoping to keep on taking it to the next level and help and reach as many patients as possible. This year I have been contact by patients from all over the USA and UK and from many countries including Argentina, Brazil, Australia, Holland, Germany, Italy, France, Hong Kong, Sweden and more.

Facebook: 
Activity on Facebook has increased greatly. The Facebook page has gone from 86 likes to over 275 in 1 year!!!! To me that is crazy but also great as it means that I am reaching more and more patients with the (hopefully) helpful posts I am making. This year we were also asked to set up a group and this now has nearly 200 members. It is a private group and there are lots of great discussions with patients all over the world and the odd doctors. Again this is another way for patients to interact and help each other as a lot of people are on Facebook it is easy.

Contact with the Media; 
Over the last month or so I appeared on BBC South East today and appeared in a couple of local papers. This led to several patients contacting me and I am trying to get the condition mentioned in some higher profile media outlets but I doubt it will come to anything.

I have also had my story written up for the Dupuytren's practice which will hopefully be helpful to any patients that are visiting their site and new Facebook page.

Patient Series 
October / November also saw the launch of the patient series, this is a set of posts about other patients that I am going to follow over the next few months / years to see how their condition progresses. After al I am hoping that my condition will never progress again and so it is better to follow more patients than just me. This already seems to be a hit and receives a lot of attention on the blog.

Patient Interviews:
This year has also seen some new interviews added to the collection with both a doctor and patients linked to laser therapy having been interviewed and patients from RFA and TPA also answering my questions. It would be great to be able to hold some live / video interviews with the patients even if I don't have the facilities to edit the videos.

Patient Survey: 
The patient survey was also launched this year and has been answered by over 2000 patients and is hopefully going to give us some interesting results to look at.

What next? 
Next year we are looking forward to presenting data at the International Dupuytren's Symposium and looking forward to analysing the data and seeing what interesting results have been obtained.

Continue the patient series and monitor what is happening to all the patients, it is so kind of them all to take part.

Hopefully get a few more stories in the news to increase doctor and patient awareness of the condition and the different treatment options.

Who knows, perhaps having some video chats with patients and hopefully interviewing more doctors and patients to add to the ever increasing collection. Hopefully the Facebook page and group will continue to expand.

On a personal note I would love to lose all the excess weight I put on whilst I couldn't exercise because of my foot. This is something I need to do and would love to be able to get down to a sensible weight this year and banish the largest remaining constant reminder.

Finally thank you to all of my friends and family who have always helped and supported the blog and of course to all the patients who have ever sent me a nice e-mail or commented on a post and especially to those that have done an interview etc.

Thursday, 4 December 2014

Patient Series - November / December 2014

This post is the first catch up on the patients taking part in the series of monthly updates. Please note that not every patient will always take part, to see their introductions and all posts related to this check out the following page: Patient Series 

Every 3 months I will try and supplement this post with a second one summarising the experiences of each patient so far. 

Patient 1: 

 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? 

The nodule in my left hand is growing, my little finger is contracting. Under my left feet the lumps are growing slowly. Walking more than 30-45 minutes is painful, can’t stand still for more than 1 hour. 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 1. The average is 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 

I visited the doctor for my right hand (6 weeks after surgery). My right hand is working as normal, no pain, no medication. This was the quickest recovery from the three operations they have performed on my hands. The operation for my left foot is scheduled. I am afraid there are no other options. According to the professor the operation will take 8 hours (microsurgery is involved)

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. 

My right hand is working as usual without pain. My left hand is painful sometimes. The pain in my left foot makes that I can't walk very far or stand on my foot for a long time.

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.

No exercises at the moment, I work 45 hours a week at the moment. Most of the time in the office, typing and working with my hands. Working outside 3-4 days lost month.

Patient 2: 

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? 

No change since my last update.

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. 

My pain has increased but I have just had my first week of RT

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 and how this has impacted the condition. 

I had my 1st week of RT so my feet are very sensitive and are hurting more than normal.  The hospital where I'm having it done are terrific and I get lots of interest from the staff as most of them have never had a patient that didn't have cancer. I start my 2nd treatment on January 5th.

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 a co-founder of a walking group that trains year-round and my life is set-up that I can walk everywhere without having to drive.  I've had to take a break from training with my group and will reassess what I'm going to do after my RT treatment.  I've started driving everywhere or take a cab.

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. 

No diets, if anything I've been eating more, which isn't good since I'm not as active as I was before this. I've been doing lots of calf and leg stretching which seems to help before the RT but not as much now. but I think that's just because the RT has bothered it.

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

I don't have anything now as I'm just working through this one day at a time.

Patient 3: 

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? 
My hands have improved, the nodule and the cord on my left hand have softened greatly. The nodule is almost gone. No pain. My pinky finger on my right hand has more flexibility and can stay straighter. No pain.

The cords in my feet are not as hard, so they are softer. The foot cramping, while not gone has improved and I'm able to stay on my feet longer without having to sit down.

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. 

Improved

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 and how this has impacted the condition. 

N/A

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. 

The only major difference has been using the phosfood. I started that around October 23rd. I also think following a ketogenic eating plan is also helping.

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.

Lol I've been trying to do some walking, but now my knee is bothering me! Hahaha can't seem to win:) 


Patient 4: 

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? 

In the last month, I have noticed no change in number of nodules but the area of the nodules has hardened noticeably and widened slightly.

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. 

After one longish bike ride, I felt pain at about level 2 so no need for painkillers but I have only really felt discomfort not pain before. On average, I felt mainly discomfort this month although again for the first time, I felt discomfort when driving my automatic car with my LD (right) foot on the accelerator. An ice-pack eased my foot burning after the longish bike ride.

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

Same as last month really except less cycling: 

 (Since diagnosis, my lifestyle has changed as follows:
- minimal walking but more cycling 
- very soft shoe inserts from my podiatrist as well as custom made orthotics (not for correction but for soft support under my nodules) 
- instead of about 2 glasses of alcohol a week I now drink very rarely
- I used to take calcium supplements and glucosamine with chondroitin daily - I no longer do so
- I now take vitamin b6 and b12 supplements
- I have a small handheld ultra sound device which I use on both feet twice daily for 10 minutes
- I drink about 2 tspns apple cider vinegar diluted in a glass of water daily

See above for self treatment. - ultrasound and vitamins. I also stretch my feet and toes each morning before putting my weight on them. The ultrasound device was about $180 Australian dollars. The podiatrist I visit is cheaper through community health ($11.50)) per visit) and orthotics made free by her.)

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 have cycled less this month and so generally exercised less. With the hardening of the nodule area, I tracked down a Dr Grenfell in Bendigo which is some 200km away (rough guess on km) and received one email in response. He wrote a paper with Dr Borg on radiotherapy. I haven't heard back in response to another email I sent with questions. 

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 am afraid that I cycled less after I experienced a bit of pain post-cycle. (I must do better)
I have cycled a couple of times this month. 

Please list any other information that you think would be useful

Still on HRT. Rather painful shoulder one day for no apparent reason and sore knees after a bike ride so I weakened and took a glucosamine which I know actually helps my knee problems.

Patient 6

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?

Overall a decrease in pain

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.

week 1 Cycled to work and from work (8 miles round trip) 3 days – decrease in pain

week 2 Cycled to work and from work (8 miles round trip) 2 days – still little pain

week 3 Saturday - Went Christmas shopping, increase in pain, couldn't get to sleep that night for the pain.

Sunday - Rested, pain moderate.

Monday - Went to work by car, had a walk out at lunch time, that night the pain was preventing me from sleeping. Tuesday - Went to work by car, struggling with walking around work and having to take extra pain relief.

Wednesday- Cycled to work, pain still bad, cycled home, that night the pain was between low and moderate. Thursday - Cycled to work, little pain and walking so much better.

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

Amitriptyline 20mg a day and codeine to take as an when to help with pain.

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.

As you can see from the answer above, there has been times this last month when the pain has been so bad it prevented me from sleeping and I was struggling to walk. I have started cycling regularly to work and back (8 mile round trip). Yet again proving that for me cycling helps.

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.

Cycling has been the only exercise I have done this month.
I am continuing to eat smaller portions and have been losing 1lb a week

Patient 3: 

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?

No new nodules but I have noticed a fluctuating from day to day in  softness and size.

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.

Pain level is none in the morning maybe sometimes a 2 at night.

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.

Standard process phos food I take about 40 to 50 drops a day. By taking this I have my life back.

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. 


Only distance walking is something I can't do, I was doing 5 miles a day and now only about a 1 mile or so

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.

Still mild exercise compared to before nodules.

No diet change

Patient 8: 

1. Nodule/nodules on left foot continue to change. They have a figure of eight contour and are increasing in size. Right nodule has stayed the same.

2. Maximum pain: acute pain 7/10 when tearing occurs
Medium pain: tolerable 4/10 aching.
Minimum pain: no pain when resting if I have not walked or stood for any length of time.

3. Have new insoles prepared by my podiatrist to reduce pressure on nodule but support the rest of my arch. No cost - National Health Service. The problem is getting them positioned in my shoes properly.

4. Impact on my daily life is pain after a busy day walking or standing. Trying to reduce the amount of standing and I am doing less walking. When I walk fast it produces the most pain so I am using my car more for short trips when I'm in a hurry.

5. I have not walked the dog daily this month but feel I should try to keep this going for health and fitness.

6. I feel that the colder weather increases the pain and aching in my feet. My main challenge is finding appropriate footwear. I have some trainers by Meindl which are great but need replacing. Really flat shoes cause discomfort. I have some new leather boots with a small wedge heel which are very comfortable. They seem to reduce the stretching which causes pain in my arch.

Patient 9: 

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

No, though I did notice that whereas last year this time if I put the balls of by feet together the lumps on the arches almost touched, this year there is nearly a centimetre between them.

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.

Very little pain.

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

Second pair of insoles still slightly less comfortable than the first pair, but not bad really.

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.

Little impact, though I find standing for long periods uncomfortable. Think this was true before the fibromas appeared though.

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.

Flying to the Canaries tomorrow for a Ramblers Cruise and Walk holiday. Last year I had no orthotics, the lumps were hard and painful and I could do very little walking? I am hoping that this year will be different. More worried about my knees holding out!