Not sure why I am revealing this as I don’t share this with anyone, but this is why I hate diabetes the most and why I am so self conscious and hard to be upbeat about this disease. For me it is not just the ups and downs of bgs, or the feeling like crapola, but also the outward physical signs that I have dealt with for 42 years and has made my mood so often sad with this disease. I am part of the 3% of diabetics who also has this all over her lower legs, which for most of my life I have tried to keep hidden, not any easy task, especially when I love, love, love the beach and the great outdoors. Does anyone else suffer from this?
Necrobiosis lipoidica is a necrotizing skin condition that usually occurs in patients with diabetes. In such cases it may be called Necrobiosis Lipoidica Diabeticorum (NLD). NLD occurs in approximately 3% of the diabetic population, with the majority of sufferers being women (approximately 90%).
Mine is not as severe as some of these pictures, but in my head it is.
I have never heard of NLD. I am sorry you have to suffer from this. Can they do anything to help you? is there a cure for NLD? What causes it? thank you for sharing your story! you may be helping someone else out:)
I’m sorry to hear you have to deal with this as well as diabetes Karen, but thanks for raising some awareness about it because I’d never heard of it before now.
I suffer from NLD too. To be quite blunt…it sucks! I’ve been D for 24 years and always in very tight control. Frankly, I would much rather explain my pump clipped to my jeans instead of my shiny shins. The other thing that makes me crazy is the pain. I’ve never claimed to be the most coordinated chick on the block. So, when I happen to run into a chair…it darn near brings tears to my eyes.
Keep the faith and remember that I feel your pain.
Awwww thanks to all that responded. My sisters always tell me you are ridiculous to let it bother you, but you should see how they will point out a blemish on themselves, and I just want to scream at them, but I don’t.
I have often felt the stares at the beach it has been hard. The NLD finally started to fade after about 20 years, but the skin tissue is so so thin, but then I developed some new skin issues on my feet, lordie.
Thanks again everyone, not sure what possessed me to share my tale of woe.
Thank you very much for the info on NLD. I have never heard of this condition before. I will definitely do my research & educate my friends & family with diabetes…
Karen, we each have our struggles and stories. Thank you for sharing yours so that we can help you carry the burden and for educating those of us unfamiliar with this condition.
You are one of the most delightful, insightful, and warmest members of our community. What would you tell me if I had posted this? You would say something to make me feel supported and you would probably make me laugh. But you would also tell me that this doesn’t matter. That it doesn’t have any effect on who I am. That it is one more way that diabetes tries to take away from what is truly important.
I’m a professional singer with transparently white legs and have a huge dark brown birthmark on one leg (larger than a credit card, raised a few milimeters above my skin (so that dermatologists actually call it a mole and it meets all four indicators of future melanoma risk but the removal process freaks me out, so I just watch it)). ANYWAY, I can remember twice in my career thinking I could perform on stage without all eyes going to the dark-spot-on-Jupiter that is my lower right shin. I couldn’t. They did. They couldn’t resist. I don’t work in shorts, perform in short dresses, or even wear capris - but the pool is me-time. You should find the situations where you can feel free to be YOU with all your imperfections. I’m out there arguably too chunky for the bikini I’m in, with my pale skin, birthmark covered leg, and pump infusion set tubing going every whichaway, but I’m out there that day for me. I don’t swim often, but just like before diving in, you’ve got to take a deep breath and plunge.
And sometimes, you’ve got to have a little fun. Once in the sixth grade, I convinced myself to wear shorts one day. Walking down the hallway, a girl seated on the floor pointed and said I had “something” all over my leg. I gave the friend I was walking with a knowing look and threw myself in the floor yelling “get it off me! get it off me!” Totally freaked her out. Tell people gawking at your splotches “I know, right? Last time I’ll use a spray-on sunscreen!” or how about “Mesh pants were a bad idea!” or maybe “You’d think I’d stop planting poison ivy in my garden!”
Karen,
You are great in every way,so forget about this.I have a 13 y old patient with hypoparathyroidism,developed vitelligo all over her beautiful face,she dropped of school because of her peers comments. I persuaded her to go back and to tell the girls that is her fate and she has to accept it and move on.
You are blessed in every way Karen.Best wishes
Karen I’m so sorry that this has affected you. Me, myself and I haven’t got thar problem but I’ve had diabetes for 45 years now and well you never know! I have never heard of NLD but thanks from all of us that didn’t know about it! I guess I’ll be talking to my Dr about it really soon! Good luck to you dear!!!
I had a friend who also suffered from NLD. I know this is going to sound like a lie, but…
I truthfully, truthfully do not think these pictures are that bad or horrible or ugly or frightening. If I saw someone on the beach who looked like this, I might think she had a funny sunburn or maybe scarring from a real burn, or, in some of these pictures, just a funny discoloration of skin. That said, I do understand your frustration and self-consciousness.
It’s all part of this disease. I do not suffer from this condition but I can empathize with you. I would not think any more or less of you if I were to see it. I think you should enjoy your life and not worry about what others think. I don’t think it takes away from being attractive in anothers eyes; it’s just another human variation.
Thanks again to everyone for your kind and understanding comments.
I have enjoyed my life and have always done beach vacations and will continue to do so.
I just wonder how my life might have been or what I might have accomplished if it were not for diabetes and for some of the physical complications I have endured.
Sitting here with my second low from cutting the lawn and pulling weeds, ahhhh!!!
I know there are things far worse especially after viewing Stand up for Cancer Friday night, but just sharing my little tale.
Here I am Lee Ann! I’m so sorry I hadn’t posted before now but I didn’t log on all weekend.
Karen … I have NLD also. I’ve been type 1 for almost 27 years but have had this for about 17 of those years. When I was about 15 the spots appeared on my legs out of nowhere! We had gone on a field trip with my high school right before they appeared so we thought I may have gotten bitten by something. I don’t even recall how many doctors my parents took me too & I’m not even certain which one it was that finally diagnosed me. They actually took pictures of my legs to put in medical books because they had not even seen any cases of it before mine. The dermatologist tried steroid shots (yes in the shins - yikes) and tape but nothing really worked so they stopped treating it after a while. Mine have gotten much lighter over the years but they are still there and I totally understand and can relate to how self conscious you are about it. I NEVER wear skirts without dark stockings or knee high boots or shorts and when I do go to the beach, I cover up until the very last minute possible going into the water. There is makeup that I used to use but still have … dermablend. Have you tried that? It works pretty well. It does suck but as I’ve gotten older, I’ve tried very hard to let it bother me less. My husband doesn’t care one bit that I have these marks and never has so that certainly helps =) You’re not alone Karen … if you want to, feel free to contact me anytime about this (or anything else of course!)
Thank you so much for responding, and omg, I had all those treatments as well, steroids in the shins as well, lordie. Your total response sounds exactly, exactly like me and thank you, thank you so much for sharing, and yes I have tried the make-up, but not worth the effort to me. The stories I could tell.
Hi Karen! I have NLD also. I was diagnosed with diabetes when i was 9, then got NLD on my shin when I was 12 after scraping it on a swing set. It has grown and shrunken and lightened and darkened over the years. I also was given different treatments from doctors, and was offered the steroid injections, but I declined. They gave me steroid pills instead, which I don’t think was a good idea to be giving to a preteen. Grrr!
One of my doctors along the way gave me Retin-A, the cream made for acne. It made it less red for a little while, but I stopped using it because it seemed to be thinning my already-thin skin, so I’m not sure if it ultimately would have made it go away. I had previously been given all kinds of different skin creams and the Retin-A gave the only noticeable change.
Thanks for posting! I hadn’t thought about how much it sucks in a while, sometimes I forget about it until someone sees it and asks “Geez, what happened to your leg?!”. Then I get to brag about how long the name of it is. Maybe the more we complain about it, a doc will stumble upon a treatment. It is as though the fatty layer of skin is missing, so it seems like it should be a simple fix.
By the way, my last name is Doering too! Small world.
Thanks for responding Michelle, I don’t feel so alone about it, also don’t feel so guilty for being a bit self conscious. I often beat myself up for letting peoples stares get to me.
I’ll email her and let her know.