Necrobiosis Lipoidica - Treatments

(Georgina) #1

Hi

I am newly diagnosed with this, I don’t have diabetes or at least I don’t yet although the doctors say the likelihood is I will get it eventually.

I am looking for any help/ support with successful treatments, I haven’t managed to stop crying since finding out. I have searched everywhere but keep hitting dead ends.

I would also like to know if anyone knows if you can still Ski with this disease. I was almost a competitive skier and it is a big part of my life. I know that contact sports can make the marks worse and I with skiing of course you are in a tight fitting boot and prone to hard falls. I am worried because at this stage I don’t think I could loose this part of myself too.

any tips or help my appreciated.

(Pascale) #2

Hey, i just saw your post. I am 20, and i have it for 3 years. One year ago i went to the doctor and found out what it was. Since then i got some treatments. First they started with a cream but it didn’t helped me. I started getting injectection with watered down corticosteroids. I had them a few times on a part of my spot. It really seemed to help but it is a slow proces. On one half the injections were too much for me and it caused my spot to have an even thinner skin. It is like paper and i have the feeling my veins under it can pop any minute. My skin color vanished on that half and like one centimeter around it too. On my ‘normal skin’. But the good part is the spot on that half complety stopped growing and isnt inflamed anymore. I am planning to get another injection on the other half, because my spot is hidious anyway. But at least the growing will stop. My spot is now about 4x3 cm and i am not diabetic too. I haven’t expiereced other spots forming on my leg. Even though i hit my legs too sometimes. I think that depends on your body and the seriousness of your condition if i read other stories. I am carefull when i got outside in shorts and protect them with a small bandage. The doctor told me if i really wanted a skin transplant i have to think about it. The scars would be even bigger, and i will have another scar somewhere else on my body where they take the healty skin off. It can only happen when they spot completey stopped growing. But there is a high risk the spot will come back on the new healty skin after the transplant. Others options? I don’t know. But we will probably never loose the spots and it is really makeing me insecure. I hope to also find some new methods.