Ledderhose's Disease is a rare disorder consisting of non-malignant thickening of the feet's deep connective tissue.
Can anyone name a doctor, in Canada or the States or anywhere, who can diagnose Ledderhose or Dupuytren's in the feet? Please!
Like you, I consider myself well informed in Plantar Fibromatosis. If you think you are disappointed, you should come to Canada, where they still do not have Cryo for Podiatric surgeries. I have a theory similar to you, that this is auto immune related. I think that the nodules are actually stimulated by exercise. They are hyper tissue growth, like a benign cancer. Its the body's hyper response perhaps to injury. When mine started, I was just starting my nursing career and on my feet for 12 hours a day. I walked everywhere. Now, after 16 years, 2 complete resections both feet, and now cryo, I am lucky I am still walking on my own steam. So far, my faith is in the cryo, because as far as I know Xiaflex is not for Plantar Fibromas. I had cryo about 12 weeks ago, and it got me back walking and on less pain meds. Yes, grafting is known to discourage tumor regrowth, but the extensive recovery is not an option, as I have equal problems in both feet. I am glad that you are finding some options. I do not know if you are also part of the Plantar Fibromatosis web group on Yahoo, but there are more members and lots of info. Good Luck! Susan
I'd like to know the treatment options considered by the members here. Please share what you're doing, other than surgery. Below is my own history with the disease. I'm a 46 year old woman with Ledderhose, diagnosed when I was 29 yrs old. My father has Dupuytren's. I am currently hobbling around on crutches as I had 3 tumors removed from my right foot two weeks ago; the size of tissue removed was about 2 1/2 to 3 inches long by 1 inch wide. This time (this is my third surgery with large Ledderhose tumors), I am being treated by a talented young Podiatrist/surgeon who used human tissue (grown in the lab) to replace the space of the tumors. This doctor has had very good success in zero repetition of the tumors after using the foreign skin (of course he also is taking a clean margin around the tumors as well, a well known technique to prevent reaccurance). I will say that I consider myself a near-expert in Ledderhose, since I have needed 3 surgeries in the past 17 years to live a semi-normal life. I have had Hashimoto's disease (thyroid-auto-immune) since I was 19 years old, but it was not treated until I was 38 years old, when I finally got very very sick. I also have the auto-immune variety of Arthritis. My endocrynologist (an extremely talented woman) knows nothing of Ledderhose. I WISHED that there was one doctor who could treat all of this auto-immune stuff (including Ledderhose, which I believe is auto-immune), but I have not found a doctor who could do this. So...the Podiatrist for Ledderhose, the Endocrynologist for the Hashimoto's, and the Rhumatologist for the arthritis. What no one has ever told me (because no one knows) is WHY. I will say that I am quite dissappointed that in the USA, the NIH (the National Institute of Health--the government agency for medical research) has put exactly ZERO dollars towards research of Ledderhose. Other tumors: I should note that I currently have fibroid tumors in my uterous and one of my lungs, and no doctor can tell me why. I do have an appt with a lung doc in Sep 09 to pursue diagnosis. Background: My first tumor was very large (left foot), and at the time I was an extremely fit 29 year old woman, a vegetarian (I do not believe that diet plays any part in Ledderhose) running 6 miles a day 6 days a week. The tumor went from a pea size to 2 inches in one month (left foot); surgery was the only option. The doc took a clean margin of tissue around the tumor. Tumor never reacurred in this foot. My second tumor was in 2004 (right foot), it was about 1/2 inch in diameter on the right foot. The doctor never took a clean margin around the tumor. Tumor reacurred in 2008, in multiples in right foot. Aug 2009 are latest tumors (3 of them) in the right foot (explained above).
Dupuytrens Contracture has a website and gives information on XIAFLEX unfortunately it deals more with the chords not the nodules. So not an option for us. Please take a read though lots of great information. I have both Ledderhose in both feet and Dupuytrens in both hands. I am just a patient but have researched this alot and wished I would have prior to surgery. !!! I hope this helps you.
I was diagnosed with Plantar's Fibroma in 2003 with a tumor about the size of a pea in the right foot with no pain at the time. Since that time, I have a second tumor on the right foot and one large tumor on the left foot. I am now starting to experience pain when standing or walking for an extended length of time. My father had Dupuytren's Contracture in his hand and I guess passed the gene to me. I am now at a time where a decision needs to be made as to surgery or the new injection of Xiaflex. Does anyone know anything about this?
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
Ledderhose began early 90s
Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.
Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.FIND YOUR COMMUNITY
Our rare disease resources include e-books and podcasts
Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.