I noticed a lump under one arch at least 5 years ago. It doesn't seem to be progressing and I've quit worrying about it. I run too so I know what you mean. Hand problems can be worked around, but foot problems can be disabling.

Several posters here have linked DC with glucosamine and it appears that if you stop taking it, the DC may stop progressing.

Brian,
I find this interesting as I also have a "thickening" on the top of my feet -- as opposed to the normal affliction on the bottom sides. My Dad and 2 of his 4 brothers had really bad DC in both hands. After suffering with my feet for 7 years(no thought that it could be related to my Dad's DC), I suddenly developed the nodule in the palm of my hand -- bingo! I finally made the connection. My doctors(even the orthopedic surgeon who operated on my Dad's hands) never associated my problems with DC -- until I asked. Being a female, I had been told it was unlikely I would inherit this. When I pointed out the "thickening" on the tops of my feet, the surgeon just sort of shrugged it off -- however he cannot find anything else in my feet which would be causing my "claw" toes(misdiagnosed as "hammer" toe). I am so very grateful I had declined to have the surgery recommended by the podiatrist. The orthopedic surgeon has declined to operate as he says it would most likely cause it to spread. I get a burning sensation in the skin on the tops of my feet. Do you also have this?
JoAnne

Hi!
I'm a 29nine year’s old girl from Sweden, and I have Ledderhose's disease. I found my first nodule jan-2001 and I've got it removed by surgery in April same year. After that my feet’s were fine for 2 months. Then it started growing again and I've got 1 nodule for every year. The biggest one is about 3 cm in diameter. It hurts to walk and to run, but I can still run, which I'm grateful for. My orthopaedist says that surgery can make it worse so I will wait until I can’t run anymore or the pain can’t be relieved by painkillers.

My question to all of you out there with LD is, when are we going to get a cure? When are we going to be treated as if this is a disease? The orthopaedists in my town doesn’t understand my problem, and they are not interested to find a solution.

Please contact me if you have any advice!

/Kajsa

Hello,

The disease (DC)on the feet is called LEDERHOSE. I unfortunately developed Lederhose on the sole of my left foot at the tender age of 11 years. It is called Juvenile Lederhose. It first appeared after I had an accident and the ensuing trauma brought on the lump which turned outto be Lederhose. I had an initial operation at age 13 but it grew back event bigger! I had a second surgery at age 15. The surgeon did a 'radical' removal of the affected fascia but did not nor do they remove the tendon or the ligaments...only the fascia.

The second surgery was successful and I have not had any Lederhose'e disease on that foot since. I have developed DC in my hands as of the age 17. At first it was but a small knuclepad on the first finger of the left hand. At age 29, it started spreading to other fingers and to the other hand. I have 6 of my 10 fingers affected with either knucle pads or DC in the palms, on the tendons.

I am now 46 years old. About 4 years ago, I started noticing two lumps in the plantar region of my right foot. It was quite painful at times and I decided to have surgery to remove it....infortunately it grew back but much bigger! From two small nodules, it grew back the size of mu thumb. It is quite uncomfortable in the mornings...the foot is stiff and the first 15 steps are uncomfortable.

I would really advise anyone to think twice about surgery if the pain and discomfort is tolerable...

At this point, I am tempted to have surgery again but the concern is about possible complications and damage. As the second surgery on my left foot was so sucessful, that is the main reason that I went ahead with the surgery on my right foot.

****************8

I have done research in both allopathic and natural medicine. In the allopathic area, I have learned quite a lot and decided to do some nutritional modification of my diet. Naturopaths have mentioned that cholesterol can be a catalyst in the advancement of the disease for someone who is genetically prone to this disease.

So, I am working on balancing my cholesterol level and cholestero ratio. I also read several place that alcohol could and can be a serious catalyst as well...

So, I decided to abstain 100% from alcohol since a year now. All that I can say is that it seems that the disease that was getting quite agressive in the last four years seems to have stabilized and that to me is quite good news!

I will wait again a year or two to see how things develop in my right foot to see if I want to risk surgery again..


argon