Strangers often assume that my lower legs, (and areas of my upper legs), have been severely burned. My lower legs are primarily covered in scar tissue and I have some open wounds, (currently only on one lower leg). Most of the skin on my lower legs is brownish-red, and there are some brownish-red spots on my upper legs, also. But the discoloration and the wounds were not caused by any burn. Rather, they resulted from a rare disease called necrobiosis lipoidica diabeticorum, (NLD).
No, I am not diabetic. But most who develop NLD are. Hence, the 'diabeticorum' tacked on the end. I have NL. No D.
Many doctors had told me that NL(D) was incurable. That I was stuck with the brownish-red spots for life. And that was bad, but hardly the worst aspects of the disease. Because in severe cases as I have experienced, NL(D) can be life threatening due to complications.
My own immune system has been attacking my skin, making it weak so that the skin can break open or ulcerate. The ulcers, or open wounds, are slow to heal. Too, they are at risk for becoming infected. And last year ulcers did become infected. I spent month after month on IV antibiotics, only for the infection to become resistant to them. In the end my local hospital sent me home on a final, higher dose of IV antibiotics, siting that there was nothing more that could be done for me there.
Thankfully, a major hospital was able to do more. I was prescribed silver-coated bandages, (yes, real silver), an environment that the bacteria cannot withstand contact with. The bandages have done wonders to fight the infection.
However, infection was only part of the problem. New ulcers and recurring infections were the risk unless I could somehow stop the attack on my skin. In the past that had been addressed with long-term courses of oral steroids. But those had their own horrible side effects. Further, my doctors had told me that it was no longer safe for me to continue taking the courses.
I might have given up, but I refused. Instead, I did all I could to learn more about what I was battling. After all, I was not born with NL(D). The disease had somehow developed. And I thought, what had I done or not done, (compared to others who did not have the disease), that might have caused it?
For me, it came down to diet - despite that so many of my doctors, (and there had been quite a few), had denied a connection between diet and NL(D). Dr Phil's book on changing eating habits, (sorry, I've forgotten the title - but not the information), was one of a few that helped me make better choices about my diet. I gave up junk foods and learned to like an abundance of fresh fruits and vegetables, (most of them in uncooked form). I began to limit, even omit, certain meats, while adding to my diet, such things as nuts, brown rice, cooked dry beans, ect. I stopped adding shortenings and cooking oils and margarines to my diet. I stopped eating refined sugars and products that contained them. I stopped eating products that contained bleached flour. I limited or even omitted certain dairy products.
My legs used to stay swollen most of the time. The brownish-red spots used to be inflamed - they would itch and sting. They would become ulcerated. Not now. Not as long as I watch what I eat.
It's been more than 10 years since I was diagnosed with NL(D), and much of the damage was done before I learned that diet changes would help me. Last year my ex-primary physician was talking amputation because of the resistant infection. This year my left leg is ulcer free for the first time since 1999. And my right leg is getting there.
In severe cases NL(D) can be dibilitating. I've had times of being wheel chair dependent, times of being bedfast. I suffer from post traumatic stress syndrome due to all I endured. But I absolutely refuse to give into the disease process without a battle. So I've seen some so called, "permanent", lesions (the brownish-red spots) fade, or disappear completely, or at least their centers return to the normal color of my skin. That, after changing my diet. Consequently, I no longer believe doctors have all the answers. I don't believe I can expect some pill or treatment to be so effective that I can ignore being responsible for maintaining my own health through diet and basic care of my body.
