Diabetic complications.
The Voldemort of the diabetes world. The, 'he who shall not be named'. Some conditions go hand in hand. A 'buy one get one free' deal. From nerve damage, to eye damage, cardiovascular disease, skin conditions... the list is endless. People with diabetes are thoroughly checked for any warning signs. (Well, at least they should be! It's important to attend regular check-ups.) Neuropathy, retinopathy and nephropathy being common words throughout the diabetic community. I'm here to talk about a somewhat hidden gem... Necrobiosis Lipoidica Diabeticorum. NLD, for short.
A brief overview...
Necrobiosis Lipoidica Diabeticorum is a rare skin condition which can affect insulin dependent diabetics, however non-diabetics can also get it. The condition is most common in adolescent females with T1D. Even so, it's very rare. So if you fit that description, please don't panic. NLD is often spotted by irregularly shaped, dark-red lesions found on the shins. They can be quite sore and inflamed. Although legs are the most commonly affected site, they can also occur on your face, abdomen, wrists and scalp. These lesions slowly enlarge over months or years. The exact cause of NLD is unknown but leading research connects it to damaged blood vessels, which suggests 'better control' would improve the condition. However, other resources say 'better control' would have no effect whatsoever. As NLD is very rare, it can be hard to diagnose. It's commonly mistaken for other skin conditions, especially at an early stage of development. A skin biopsy is often used to diagnose the condition. Necrobiosis is somewhat painless. However, if not looked after it can spread, it can ulcerate and it can become generally unpleasant. (Warning: If you're googling for pictures - these are probably the ones you will see). Treatment for NLD is sparse, challenging and mostly unsuccessful. From baby aspirin and cortisone creams to steroid injections and light therapy, it's pretty much 'hit and miss'. So there is no "cure"? But that doesn't mean it's all doom and gloom, right?
If you are concerned about NLD, I'll happily talk to you about my experience. However, I am not a healthcare professional and I strongly advise you to talk to your GP, DSN or book an appointment with a dermatologist if you are concerned.
My diagnosis story... November 2013. That's when my first lesion appeared. I say lesion, at this point it was a small red dot, no bigger than a bug bite. And that's exactly what I thought it was. It took me until January to think "hold on a second, this is still here..." and that's when I saw a nurse at my local GP. Adamant that it was a bite, she gave me a variety of antihistamine cream. A month later, new bites had appeared and they'd grown in size. I booked another appointment, with a different nurse.
Between that moment and August 2015, I saw six different healthcare professionals, with my 'bites' slowly getting worse. The only reason it got diagnosed? Pure luck.
I was at my seventh appointment. Again, the nurse didn't know what to say to me. This time she decided to call in Dr Harrington for a second opinion. She'd briefly updated him on the situation and the first thing he said when he saw my legs? "Do you have any history of diabetes in the family?"
I didn't answer straight away, I looked at my mom, she was looking at me. It was an 'oh shit' but curious look coming from both of us. "Yes... I'm a type one diabetic".
And that was it. The first mention of NLD in nearly two years of having it.
After "diagnosis"...
This is when the fun really begins. Dr Harrington had referred me to a dermatologist as well as prescribing Protopic ointment. Lesions slowly getting worse... On my first meeting with the dermatologist, he wasn't sure if it was NLD or Granuloma Annulare. GA can look quite similar at an early stage but "isn't as serious". He wanted to do a biopsy but was reluctant due to the possibility of ulceration. He told me he was 90% sure it's Granuloma Annulare and "if it is, I'll have you fixed in no-time". Trying not to be too happy about that outcome, I asked him to do the biopsy. The treatment for Necrobiosis is a topical steroid cream. Granuloma should just go away on its own with no treatment. Steroid cream would make GA worse. So I figured it would be best to just draw a line in the sand and treat whatever it is with the correct ointment.
Within an hour I was at home on the settee, leg stacked on some pillows, enjoying my 'day off work'. Okay, I so may have milked this a bit...
Yes, they did tell me to keep my leg raised... but that was about it. My puppy dog eyes have always worked on my mom. What can I say? Sometimes I like the attention. Four weeks later I had a letter through the post to confirm my biopsy showed Granuloma Annulare. Me, my mom, even my boss could have cried a tear of happiness to the good news. I'd been referred back to Dr H. to continue treatment with him. He didn't believe it, he was convinced it was NLD but went along with the treatment for Granuloma, anyway.
I saw a different dermatologist. First opinion? Necrobiosis. I told him that my recent biopsy had shown Granuloma Annulare and do you know what he said?
"Well, Necrobiosis and Granuloma can appear quite similar on a biopsy". He called in the original dermatologist for a second opinion. (At this point my NLD hadn't drastically changed in looks from the last time he'd seen it on the operating table). And do you want to know what he said, after nothing more than a glance at my leg? "Ah yes, I would like to retract my diagnosis. That is definitely NLD". Three years. Three fucking years I've been thrown from one diagnosis to another, from one nurse to another, from one dermatologist to another. Y'know what? I wasn’t even that pissed off because deep down I knew it was the shitty condition all along. The new dermatologist prescribed me with Protopic again. Great. I told him I'd used that for a year with no change but off I went, Protopic in hand, follow up appointment booked for 3 months later (early August). p.s I haven't seen him since - they've had a "severe backlog" and I'll get a letter through the post soon. I'll be sure to keep you updated.
Making friends...
When I was diagnosed with NLD, I knew nothing about it. I found one blog post, I read a thousand articles and I searched the longest hashtag known to man on Instagram #NecrobiosisLipoidicaDiabeticorum. Ha! There are 20 posts. Twenty. And I tried to make friends with all of them, because life is better when you tackle these things together. (Which is exactly why I'm doing this blog!)
When I say it used to be inflamed, I mean the lesions were slightly raised form the unaffected area. If you ran your fingers over my shin, you could quite easily point out a lesion. Now, it's smooth. It's... hydrated! And it feels healthy, if you know what I mean? It's not dry and flaky, it's not sore, it's... good. They are a lot paler too, and I've only been using Cetraben a month. I'm yet to talk to my dermatologist, so I'll update you on his medical opinion. As far as my treatment goes, this is the only thing in the last three years which has had a positive effect on my NLD. All thanks to the internet and the power of making friends online. So now what? I'm going to continue using Cetraben. I might suggest light therapy at my next appointment, or steroid injections. Although, some people with NLD don't recommend either of those, due to complications. Avoid injury. I've never been so paranoid about cutting my leg whilst shaving or worried about grazing my leg in the pool. The smallest of cuts can develop in to NLD. I have a lesion on my foot where my flip-flop rubbed last year, so this year I wanted to bubble wrap all of my shoes. In August I grazed my foot in the pool and spent the next few weeks being paranoid that it would develop in to another lesion. (Luckily, it didn't!). The smallest of concerns are now on my mind. But I'm lucky and I know that. There are people in the world who can't access any of this information or treatment, so even though it's been a heck of a ride, I'm fully aware of how (somewhat) lucky I am. There's no cure but hopefully I can prevent it from getting worse. So that's what I shall try and do. The lesions have recently been mistaken for "badass paintball bruises", so maybe that's the story I'll roll with...
I can only do my best with this condition, so I try not to dwell on it. I can't do anything to get rid of it, I cant change the fact I have it, so why bother getting upset? You've got it. Deal with it.
That's how I'd like to think, anyway. And as with any condition, you have highs and lows. My legs are the only part of my body I don't hate, so I'm not ready to give up on them yet.
I strongly believe that the worst part of any diagnosis is doing it alone.
I hope this post reaches people. I hope people suffering with NLD can see me as a friend and come to me for help. I hope people find it when looking for answers. Because that's what I had, and what I wish I had more of. Also, not a lot of people are aware of NLD. So hopefully this is raising awareness. The more people that are aware of the condition, the better it can be diagnosed.
15 Comments
Kio
14/9/2016 08:50:30 pm
Thank you for a great blog entry again! 😊 I have few things I want to share about my necrobiosis since it is not very well known condition!
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No need to apologise for the long comment! Thank you so much for sharing your experience on my blog :) The more information people get, myself included, the better! :)
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4/3/2017 08:23:02 am
Thanks for posting this article. I'm going to a friends party and I'm going pantballing for the first time, I didn't know what to bring, Thanks
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Kio
28/12/2017 01:29:37 pm
I wandered here again and saw you replied a long time ago! So, thank you for your reply! :) My "spots" are not that sore anymore and I am really happy about it. It might be because I have learned to take care not to accidentally hurt my feet, haha. I have got more spots now though. I also hurt my shin not long after I wrote my last comment and it was horrible. Not sore in any way but it took several months to heal! Using Vetramil (it is a medical honey cream, basically sugar, oh the irony!) and those gel blister plasters healed it at last. Your spots are better at the moment, I heard? That is really good! I bet it takes lots and lots of work! I am trialling Freestyle Libre at the moment. Do you still use it or something else? I might want one but it is really hard to get one of your own. It would help me a lot, it has helped me a lot in a week already! I have a new doctor and it turned out I am getting _double_ the insulin (Levemir) I am supposed to! It really explains a lot... I also am very active so it is really hard to monitor my sugar when I am on the go. I think it would be really convenient if there was a pump/cgm that you could synchronise with your phone! Do you know if there is something like that at all? Oh thank you so much! Feel free to message me if you want to! I don't actually know anyone else with D1 or especially with nld so it would be very nice. :)
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Lauren
24/2/2018 04:48:57 pm
Sorry for the delay (again!) I really need to keep on top of these comments. I'm so glad they healed and it's a lot better! :) Mine are also better than they were, I think controlling my BG better has helped a lot. I used the Freestyle Libre for a while, which I loved. You can actually use the Libre with your phone now! And if you're lucky, some GP's will prescribe it for you. I recently swapped to Dexcom, which I personally prefer because of the alarms. The Dexcom also connects to your phone! Hopefully it wont be long before this technology is widely recognised for how much it really helps people with diabetes! Omnipod are meant to be developing a CGM/Pump/Phone tri-combo but I'm not sure how long it will be before that is available :)
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Danielle Boothe
20/2/2018 08:55:19 pm
So helpful. I am A Type 1 diabetic and doctors kept putting it off and now we’re on going on 5 years. No one took a biopsy or anything. Finally got a biopsy done and my leg looks similar to yours. Mine appeared after an injury/ bruise and started spreading throughout the years. Biopsy results are taking forever. Said 7 to 10 business days. I’m honestly just praying it’s this and nothing like cancer. The biopsy results wait is killing me. I will Know soon and definitely will be seeking out remedies. Dermatologist said to leave it alone if it is this, but I just Don’t see how. Your blog has helped me tremendously!
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Lauren
24/2/2018 04:51:02 pm
I'm sorry to hear you're in this stressful situation, it can be such a horrid burden! Fingers crossed you get your results soon, to relieve some of the anxiety. I'm glad my blog post has helped, if you get your results and have any questions - fire me an email! All the best, Lauren xx
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Cassie Schlesselman
12/4/2018 09:58:08 pm
Wow! I felt like I was the only one out there with this condition. I was diagnosed with NLD about a year ago and have tried many topical steroids with no success. I have been a type one diabetic since 4th grade, I am now 22. I am so curious to try the cetraben to see how it works. How has it worked for you and how often do you use it? Also, where did you purchase it from? I can’t wait to hear back from you!!
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Lauren
29/1/2019 08:26:43 pm
Hey Cassie,
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Allisen
18/2/2019 08:02:28 pm
I was just diagnosed this morning, after a biopsy 10 days ago...she’s giving me a topical steroid, oral steroid, and I start on a baby aspirin regimen. I’m so scared her biopsy will cause an ulcer and further infection! She gave me two other diagnosis pre-biopsy, and was shocked when it came back as nld. Now I’m FREAKING OUT! Thank you for your post, best info I’ve found! My one question...I can get more of these from an injury or bug bite at any time? Lord help me, I’m so clumsy! Not to mention mom of3 and a preschool teacher who lives in mosquito heaven!
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Hi Allisen, I'm sorry to hear this but glad you found my blog!
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Rita
22/3/2019 04:18:13 am
I’ve been searching and reading and searching some more! I couldnt get real answers from anyone and then I found an article, searched some more and then found you! I just had 2 punch biopsies done 8 days ago and the wait for results is beyond painful! Ive been a T1 diabetic for over 20 years. After seeing everything on this condition I would just about bet my life this is what is spreading all over my legs! I’m freaking the fuck out! I called my derm today to tell them to make sure to have the lab check the biopsy for this also and was told someone would call me back! Never heard back and they closed for the day when I called again! I’m so upset right now. I almost can’t calm down!!!! I’m gonna go buy some of this cream you recommend and give it a try. Honestly nothing has helped! Nothing! 😞😞😞 Sorry for going on. I seriously need to calm down. Thanks so much for sharing, although nothing can actually make me feel better right now, I feel better after seeing your pics and hearing your story! Thank you thank you thank you
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Lauren
19/4/2019 05:43:16 pm
Hi Rita,
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Luanne K
27/7/2019 04:59:38 pm
I’m so glad I found you! I have NLD also, diagnosed by biopsy about 12 years ago. I am now 63 years old and NOT diabetic. Some spots have spontaneously faded to a medium brown color on their own but many more have appeared. I’ve been blessed to not have any kind of slow healing or open wounds, it’s just very ugly. Gets itchy sometimes too. Are you still using that Cetraben? I’m off to Google it now. All I’ve been using is body lotion and a steroid cream when it gets too itchy and I can’t relieve it, which is not too often. I’m tired of not being comfortable showing my legs, I want to wear dresses but I just can’t bring myself to do it. I do, however, wear bathing suits and do water aerobics and don’t worry about what people think. I’ve seen people look a little, but never ask. Only once did I have to tell someone what it was. I just said it was an auto immune disease and absolutely not contagious.
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Kate
12/1/2020 05:34:32 am
Hi!
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