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, 30 October 2014

Patient series - Patient 7 Introduction

This time I am introducing a patient that I have already interviewed. It is great to have so many helpful patient on board for this project and hopefully we can really provide something that will be useful to all the new patients with this condition. 


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?

48 female. Norwegian and Swedish.

Do you have it in both feet or any hands?

Both feet.

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

None I know of.

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

radio frequency ablation. Blood platelet injections.

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:

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, old ones are softer.

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.

Great improvement, maximum pain being 1 out of 10 it was 2 at most.

Average pain is around a 1.

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 Started standard process supplements 2.5 months ago.
Phos food , 60 drops a day on average and about 2 times a week 90 drops a day.
Zypan, digestion from standard process. 3 with every meal. But have forgotten to take it also.

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 been in my old shoes and started walking again.

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 stopped the high protein diets. This month I could walk 1/2 to 1 mile a few times a week which is great because i was having so much pain I was walking only as necessity.

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

Nothing else.

Wednesday, 29 October 2014

Association of Plantar Fasciitis and Plantar Fibroma?

Thanks to everyone on the Facebook group and the Facebook page I have results from over 50 patients on a small survey about plantar fasciitis. On the group we noticed that there seemed to be a high percentage of patients with plantar fasciitis and thought we could  have a quick look and see if the numbers added up. 

So as graph 1 below shows of all the respondents with Ledderhose 45% had plantar fasciitis, bearing in mind that reference 1 says that the average for the States is 10% this would appear to be a meaningful number. 

Graph 1: Percentage of Ledderhose patients with Plantar Fasciitis
On the patient survey that we are conducting (over 2000!!!! responses) frozen shoulder was only present in around 20% of patients and knuckle pads in 13%. This suggests that the above could be a true link. The problem is that the conditions could linked not because they are from the same genetics or pathways (as is thought to be the case with Dupuytren's and Ledderhose) but because one can trigger the other or just coincidence but as a former scientist I don't think that is likely.

Graph 2: Distribution of Plantar Fasciitis onset in Ledderhose patients
If we think about these 2 conditions a link due to proximity could make sense. Plantar Fasciitis is an inflammation and or swelling of the the same tissue as plantar fibromas form on. Plantar fibromatosis is the formation of lumps on this tissue, surely the formation of a lump that is not supposed to be there is likely to cause some swelling and inflammation?

So it could be that rather than patients having plantar fasciitis on its own what they actually have is early stage Ledderhose which presents symptoms highly similar to fsaciitis because of the additional strain put on that part of the body. The results shown in graph 2 indicate that 80% of patients that had the plantar fasciitis start either at the same time or before the Ledderhose which is what we would expect if one was a factor in the other condition. 

On the Facebook page I also had a comment making a good point. The point being that potentially more patients with Ledderhose could have this condition but it has not been diagnosed as any pain etc is being put down to the Ledderhose. This is potentially the case but how can we know? I know that I was told that pain with Fasciitis is when you first get up and first start walking whilst (at least in the initial stages) the pain with a fibroma is likely to build up over the course of a day and get worse.

The results of this small survey are clearly not conclusive however it is certainly interesting that such a high number of Ledderhose patients have this condition and of those that have it most get it either before or at the same time as the Ledderhose.

References:
Reference 1: http://www.aafp.org/afp/2005/1201/p2247.html