What you need to know about having Necrobiosis Lipoidica Diabeticorum

So you have heard me mention NLD recently, and you probably want to know what the hell it is I am talking about. Or maybe you’ve just found out you have NLD and now want to know exactly what you’re in for. Either way, here’s a post letting you know all about it:

Firstly, this post is based purely on MY experience of this chronic medical condition. I am in no way medically qualified and I highly encourage you to speak with a GP or dermatologist if you have this condition to find out what treatment options are available to you.

So, what the hell is NLD?

Necrobiosis Lipoidica Diabeticorum (say that three times in a row!) is a condition with no known cause or cure, and where treatment options vary from person-to-person. It is a skin condition where raised, hardened spots appear on the skin. These can take many forms and are frequently lesions, rashes and ulcers. They most commonly appear on the shins or legs; however, there are cases where these appear on the feet, arms, face and more delicate areas of sufferers.

The name is a bit of a mouthful so I’ll refer to it as ‘good old NLD’, only without the ‘good’ and with a fair bit of the ‘old’. Haha.

NLD is a rare medical condition; however, there is research that shows that it is more common for Type 1 Diabetics to have NLD, although they are unsure why. It is also common enough for an NLD sufferer to be diagnosed with Type 1 or Type 2 Diabetes and it is believed that approximately 0.3% of the diabetic population have NLD. The condition is also linked with those who have rheumatoid arthritis, and sufferers of NLD are warned that they may also develop rheumatoid arthritis.

Despite popular belief, NLD is not caused by poor diabetes control. In fact, my diabetes is the best it’s ever been and my NLD is at its worst. Fantastic diabetes control can help with the healing process; nevertheless, the cause of NLD is not reliant on how well you actually are.

How painful is NLD?

It’s hard to explain the pain of NLD. If the lesion or spot is just a raised, red scar, the discomfort you’ll experience is just an itch or like a rash or dermatitis. However, if you’re like myself and have ulcers that like to open up, the pain is similar to anything from a second to forth degree burn. When my ulcers are open, I generally have a sharp pain in my leg, which is made worse by standing or walking. It’s at its worst when I first wake and it is normally not until lunchtime (and with lots of sitting) that this pain subsides. This pain quickly reappears if I’ve walked too much during the day, or will hang around all day if I’ve slept weirdly on my leg.

How to you treat NLD?

Good question! Treatment options vary with each individual and, from what I have read on some online support groups, there’s no one way that has been entirely successful in clearing up a person’s NLD. There’s suggestions of steroid shots, treatments with topical cortisone, even tanning (what the?!) as ways to treat the condition. I won’t be able to seek a more long-term treatment until my NLD spot has healed completely into a scar again – this could take years – so for me right now it’s about the regular cleaning and dressing of the wound. I find that, for me, the best products to use on a daily basis are Betadine (the iodine in this helps kill any nasty bacteria) and Solugel (this protects the new healthy skin growing across the ulcer and helps immensely with the itchiness!). I am a massive fan of using an Adaptic gauze – which has a slight coating of Vaseline which helps the creams settle in place – and then covering the lot in a cohesive bandage which allows the ulcer to breathe a bit easier than other types of bandages, plus it’s a beige colour which isn’t as noticeable.

Is there a cure for NLD?

In short – no. Not yet. NLD fits into a myriad of other chronic immune conditions where the cause and cure are relatively unknown (or a definitive answer hasn’t been discovered). I’m a bit of a lucky-duck: having three conditions that are all chronic, immune, and based on unknown cause with no known cure. Because of this, many doctors seem to hypothesise that the cause is related to a dodgy immune system (I won’t even try to explain or justify this, as I have no idea), but all medical professionals I have seen have agreed that this condition does not go away. I will have this red, protruding mark on my skin for the rest of my life. When it is closed and ‘healed’ it is similar to a port wine stain in appearance and I know I must one day become accustomed to having yet another aspect of my physical appearance grabbing people’s attention.

What can you do to help someone with NLD?

While having NLD really blows, there are people going through life with worse conditions or experiences to deal with. If anything, NLD has helped me become more compassionate, especially towards those who have medical conditions and are in similar situations and even more so if it’s chronic or immune related. I feel enormously for anyone who, like me, tends to get sick all the time thanks to having a terrible immune system. Naturally, most of us are pretty tough cookies (or we pretend to be); however, it’s really nice to receive support from those who care. So, how can you help someone with NLD, or a similar chronic immune condition? Everyone is different, but I do know the following: those suffering from a chronic illness or condition don’t want sympathy; they want you to understand. Take the time to research and read up on the conditions so you can really acknowledge what the person is going through, as well as considering how this impacts on their day-to-day lives. Knowing that someone has cared enough to take the time to learn about what you have to deal with on a daily basis and to tell you that they ‘understand’, and especially knowing that it’s honest and genuine…that is such a wonderful thing.

This post was polished by Page & Parchment.

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