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, 19 April 2015

Related Conditions survey - Can we find a link?

The results of the associated conditions survey are in, although this is using a limited dataset it could be useful to help guide a more comprehensive study on the conditions we now think might be related.


It will come as no surprise that it looks like frozen shoulder, keloids and knuckle pads seem to show an increased incidence in Dupuytren’s and Ledderhose patients. 



Another condition that has already been shown to have a link is Psoriasis and again this link appears to be observed.  However there are some other examples which I shall going into in more detail.



Firstly please see the graph below summarising all of the results. The public rows that are blank are because I was unable to find a good and reliable figure for the general public.






Raynauds:



This condition is explained better than I could do it on the following link:




The linkage in this condition can be seen when looking at the totals with nearly 20% of all patients having this condition compared to the figure of 10% in the general public. When looking into this condition I noticed that the rates are different between men and women, when this is done on the survey data the results are quite striking. Only 4% of men have the condition (compared to the expected 8%) whilst 26% of women have this condition (compared to the expected 13%). This seems to indicate that there is a gender specific bias for the manifestation of this condition as an associated condition with Dupuytren’s and Ledderhose.



The next step here was to drill down into the results, the starting point for this was to determine whether the link was in Dupuytren’s or Ledderhose patients perhaps both. Given this is a condition of the extremities it could be linked to both conditions so it was surprising to see that when the results were limited to the Dupuytren’s population the percentage of women with both increased to 44% whilst in Ledderhose only patients the rate was down the 26% again (note the in the Dupuytren’s group Ledderhose patients were included). On the male side of things there were no patients with Ledderhose and Raynauds whilst 5% of Dupuytren’s patients had the condition.

Clearly the above data appears to indicate that there is a strong link between Raynauds and Dupuytren’s in female patients, a larger study into this could show whether this is just a limitation of this dataset or a true correlation exists. Based on the information I have found on this condition it is not clear to see why it should have a higher occurrence in Dupuytren’s patient or indeed how one could impact the other.  





Plantar Fasciitis:



This is another condition in the plantar fascia, I have covered this previously and as expected we again see an increased incidence in Ledderhose patients.

(See this linked for previous survey, sorry the graphs are broken I will look into this http://ledderhose.blogspot.co.uk/2014/10/association-of-plantar-fasciitis-and.html)

Scoliosis:


On first reading about this condition I was baffled as to how it could have any relationship to Dupuytren’s, however from the links I could find the figure for the general public was around 3% whilst in this mini survey the patients had a 14% chance of having this conditions.


Due to this I did a bit more research and it turns out that one of the genes / proteins (Matrilin) that has been implicated in Scoliosis has a function in the extra-cellular matrix which is one of the key areas from Dupuytren’s. In theory this could a link between the 2, perhaps there is some crossover in the extra cellular pathways that result in the manifestation of the 2 conditions. This is something I would love to have the time to do a bit more research on as looking at pathways at this sort of level is what I used to do. To give me some idea of any potential link I googled Matrilin and looked at the images and lots of structures/pathways appeared showing Collagen.

It has also been found that a lack of Matrilin 2 increases the risk of Liver tumour development, although not cancer both Dupuytren's and Ledderhose do of course have the development of tumours. 



Fuch's Corneal Dystrophy:



This also seems to show an increase, from 0.09% in the public to 2.17% in Dupuytren’s and Ledderhose patients. This is a condition that impacts the eye but I am unable to see how this could be related to Dupuytren’s from the research that I have done.



Sources:



Friday, 17 April 2015

My Dupuytrens and Ledderhose Disease Story by Leslie Wieslander Rosenthal

To follow up from the DART post I did last week I have the ongoing experience of one of the very active patients and a founder of the above group. This is very detailed and I have more information and picture if people are interested. Thank you to Leslie for giving me permission to post this write up on here. 

March 22nd 2015

I am 57 years old and I have Dupuytrens and Ledderhose Diseases. It’s hard to imagine that one day I would proclaim that I have an incurable disease that is progressive and could render me disfigured and disabled. I cried for three straight days upon learning the news. Once I got over the initial shock and disbelief and had grieved the anticipated losses of lifestyle and function, I bravely and boldly sought to research, make appointments and get treatment. In five months time, I have gone from diagnosis to near completion of treatment. 

I want to share my story with you because I’m hopeful that if you are newly diagnosed, you will benefit from learning about my experience from diagnosis to treatment, and what inspired me to become a patient advocate for early treatment of Dupuytrens and Ledderhose Disease by radiation therapy.

One morning, at the end of October 2014, I awakened with a nodule in the middle of my left palm. It was as hard as a coconut. After consulting Dr. Google, I diagnosed my condition as Dupuytrens Disease (Palmar Fibromatosis). While reading about the disease, I learned that this was related to Ledderhose Disease (Plantar Fibromatosis) which I was diagnosed with at the age 
of 53. It made its appearance following a series of foot surgeries. What I didn’t know when I got Ledderhose Disease, was that I was at risk for Dupuytrens Disease and never even knew what that was! About a week later, I was able to see two hand surgeons in Maryland who confirmed the diagnosis. One month later, I consulted with two more hand surgeons in Florida. 

All four hand surgeons confirmed that the disease affects multiple fingers in each of my hands, although by this time, I only had a visible nodule and a palpable cord which had also developed extending down from the nodule into my palm. I had aggressive disease, but fortunately, it was caught in the very early stages N and N1. My hands started to ache and I had a distinct itchy and tingly feeling. I have come to know that is an early symptom of active disease. 

On November 14th, I joined the Dupuyrens Contracture Facebook Forum as I wanted to consult with other patients about their experience with the disease. Although the hand surgeons I had consulted were not interested in discussing radiation therapy as an optional treatment, I found many on the forum had already undergone radiation therapy with good success and I was very open to learning about it. They urged me to act fast so that I would not lose the option of radiation therapy as my treatment. I didn’t really understand the urgency of making a decision until I read and listened some more. I soon discovered they were right. You probably already know that there are four major treatment options, not including the “wait and see” approach. They are Radiation Therapy, Xiaflex, Needle Aponeurotomy and Surgery. There are many resources for information on these treatments and the disease, however, I think the full description, including risks and benefits of each treatment are very well described in the following links: 

http://dupuytrens-society.org.uk/treatment/TreatmentLeaflet.pdf

http://www.plasticsurgerysf.com/dupuytrens/

I have not included links to other organizations as they are included in our forum’s Pinned Post which I believe is very important to read, start to finish. Also, my intent right now is to only provide the comparison of treatment options. In any event, if you only have a nodule and a cord and no contracture, please do not let anyone tell you that you are a candidate for surgery. Surgery used to be the only treatment available and now it is reserved for only the last resort. Unfortunately, many surgeons in the US have not yet been trained to perform Xiaflex or Needle Aponeurotomy. If you are indeed a candidate for those procedures, you need to find a very experienced doctor to perform them. You can get help on this forum to find a doctor and learn more about these procedures. My focus here will remain on the treatment of radiation therapy as this was my choice and the one I know the most about.

My choice to pursue Radiation Therapy:

Before I tell you about my experience with Radiation Therapy, I want to tell you about my choice to pursue it. My choice went against the best judgement and recommendation of each of the 4 hand surgeons I consulted for diagnosis and treatment. When I joined this forum, I learned that my experience was not an aberration and that nearly ALL of the patients wishing to pursue radiation therapy experienced the same thing and were bitterly complaining about it. WHY? Dr. Charles Eaton, the founder of the Dupuytrens Foundation explains it in his blog: 

http://dupuytrenfoundation.blogspot.com/2015/03/radiation-and-dupuytren-disease.html

I believe the reasons why this treatment cannot be accepted by hand surgeons goes farther than the 13 year Seegenschmiedt study. As my radiation oncologist has explained to me, foreign studies are relied upon all the time to establish a treatment plan and protocol for patients where there are insufficient American data and studies available. It is my opinion that the opposition is due to provincial thinking based on lack of education about modern low dose radiation therapy for benign disease as well as a lack of experience dealing with radiation oncologists. 

General and plastic surgeons have relationships with radiation oncologists because many of their patients have cancer and their surgery is to remove the cancer. Some have also speculated that there is a financial reason behind the lack of referrals to a different medical specialty. No matter what you believe is the true reason, the fact that these two medical specialties do not collaborate to form a team approach for the care of Dupuytrens patients, affects patient access to care, patient outcomes and leaves the patients feeling abandoned, confused and afraid.Dupuytrens patients really have a difficult time exploring ALL FOUR of their options. They can talk to a hand surgeon about surgery, Xiaflex or Needle Aponeurotomy, but not about radiation therapy. In order to have a conversation with a medical professional about radiation therapy, patients need a referral to a radiation oncologist which many cannot get from either the hand surgeon or the primary care physician. If your insurance plan requires a referral, then you have effectively been blocked from your right to pursue one of your treatment options. 

You have been blocked due to long standing false beliefs by many doctors that radiation therapy causes cancer, fries blood vessels, and makes it impossible to have a salvage surgery should the treatment fail. Many doctors even refer to radiation treatment failures in the 1960’s for blocking your access to alternative care. Making matters worse, the only American Foundation that exists to find a cure and advocate for the disease, has called radiation therapy “controversial” in their recently published educational brochure and there is no representation by a Radiation Oncologist on the Board of Directors. Some radiation therapy patients worry that may influence insurance decisions for coverage in the future, however, now, patients are reporting good coverage through Medicare, Blue Cross Blue Shield and Aetna to name a few. It is considered “medically necessary” for the treatment of Dupuytrens and Ledderhose 

Diseases. 

Why I chose radiation therapy:

I chose to pursue radiation therapy because the treatment just made sense to me after months of research on PubMed and all of the other links provided on the various Dupuytrens websites. I watched all of the You Tube video presentations from the 2010 Miami Conference on Dupuytrens and read the chapters on radiation therapy in the Textbook on the disease. I also consulted with many patients both for and against the treatment to make sure I had the patient’s perspective to supplement my knowledge from published studies. My research was thorough and I was prepared to make a decision. Additionally, I met the criteria for a good candidate for this therapy. I have Diathesis. That means that I have Dupuytrens in both hands and one foot, the onset was early (Before age 70 for women and 60 for men) and although I do not know if I have a strong family history, I do know that I have strong German ancestry and the disease can skip generations. Here’s a little more about Diathesis: 

http://www.ncbi.nlm.nih.gov/m/pubmed/17145383/

The other reason I was a good candidate for this treatment is that I had not yet reached 10% of contracture in any of my fingers. After that time, while you may still have radiation therapy, the success rate of the treatment drops. I decided I wanted to be in that 87% chance of success and get treated immediately. Why would I want to wait until I could not lay my hand flat on a table to go back to the hand surgeon and have a big procedure which has a lower success rate than the radiation therapy does? 

Here is a study that compares the success/failure rates of all of the treatment options 

http://www.ncbi.nlm.nih.gov/pubmed/19803262

Here is a link to the 13 year German Study and protocol which most of the American Radiation 

Oncologists follow: http://www.ncbi.nlm.nih.gov/pubmed/20127225

A study in the UK on Dupuytren's, Ledderhose and Peyronie's, chapter 7 starting page 84. 

http://www.rcr.ac.uk/docs/oncology/pdf/BFCO(15)1_RTBenigndisease_web.pdf

International Dupuytrens Society endorses safety of Radiation Therapy (board members of IDS - Wolfgang Wach, Charles Eaton, Heinreich Seegenschmiedt)

http://www.dupuytren-online.info/radiotherapy_side_effects.htmlAND

American Study on the safety and efficacy of Radiation Therapy:

http://www.redjournal.org/article/S0360-3016(14)02661-3/pdf

This paper is one I refer to all the time – very well done! It is one man’s account of his journey to Hamburg, Germany to be treated by Dr. Seegenschmiedt: 

http://www.pushandpullman.com/dupuytrensradiotherapy.html

You may also see a 50 minute You Tube presentation of Dr. Seegenschmiedt’s presentation at the 2010 Miami International Dupuytrens Conference here: 

https://www.youtube.com/watch?v=oXR_NOAaSa0

Self referral to a radiation oncologist:

Having done my research, I was ready to consult with a radiation oncologist. In the face of opposition from a number of hand surgeons to my first choice treatment option, I sought to self refer to a radiation oncologist to discuss the treatment directly with him. 

My doctor is Dr. Gopal Bajaj: http://www.virginiaradiation.com/bajaj.html

I knew that doctors are morally, ethically and legally required to disclose all alternative treatment options and it was my absolute right to do so. I was prepared to fight for the opportunity to get a referral if I had to. Fortunately, my insurance allowed me to self refer. 

I wanted to have the ability to talk to the doctor, ask questions and decide with him, the doctor who knows far more about the treatment since he administers it and was trained in it, than the doctors who were not trained in radiation therapy and do not administer it. I wanted to determine with my radiation oncologist, if it was the correct and appropriate choice for me and ask him directly about the safety and efficacy of the treatment. This whole struggle made me feel very disappointed in the medical system, and the hand surgeons I had consulted, because I wanted to have a team approach to my care. I wanted the hand surgeon, who examines hand patients every day and who had more experience palpating hands to identify the location of the nodules and cords that had not yet appeared, to draw my radiation map. Absent that collaboration, I relied on my radiation oncologist to draw my maps and to treat me, with no hand surgeon consulting or following my disease or my care. I think he did an excellent job locating the disease and drawing my maps. However, since this treatment is fairly new to the US and Radiation Oncologists have limited experience treating Dupuytrens and Ledderhose patients, I believe you should still try to have a hand surgeon draw your maps. If he refuses, see if your radiation oncologist can call him to request that. Here is a picture of my right hand radiation map. The circle represent nodules and the double lines represent cords. The long continuous line around the outside and the lines on the joints of my fingers is the outer margin of the treatment field. 

Early results:

I have just completed round 2 on my left foot and my left hand. I still need to complete my treatment on my right hand. So far, my result is remarkable. The pain, in my foot, that was awakening me out of a sound sleep is gone. Erased. The achiness and itchiness in my hands was gone after the third day of my first treatment. I had only very mild sunburn sensation for maybe a day or two, but for the most part, I felt great during my treatment with very mild side effects. My aftercare instructions were to keep my hands and foot out of chemicals for a few weeks after treatment. Also, it was suggested that I apply a thick moisturizer like Aquaphor on the treated area daily. I bought some little white cotton gloves to wear over my hand to protect fabrics and other things I would touch while I had my hand all greased up with lotion. Finally, I was instructed not to do anything that would create mechanical stress on my palms – no rock climbing, golf, using a hammer – you get the picture. Typing is fine. 

While no treatment will last forever – Dupuytrens and Ledderhose comes back – I hope that by catching it early, with a non-invasive treatment, that I will be able to enjoy many years of halted progression. There are members on the forum who had their treatment 6 years ago and still have not progressed.

That’s my story! I’m happy to answer any questions that may not have been covered here. I have been a mentor in a past life, and will gladly help guide you through the process. Private message me and we can exchange information. Sometimes it’s just easier talking on the phone than sharing lots of information over the newsfeed. We must all “Pay it Forward” and I am anxious to help anyone new since so many helped me when I was newly diagnosed.

Wishing you the best possible experience both here on the forum and with your treatment outcome. https://www.facebook.com/groups/1622748151282109/

A great write up and I have more details and picture to upload in the near future.