NLD

[CherryBerry29]

Hi, I’m Charlotte.

I’ve been type 1 diabetic since I was 6 and now I am 23. When I was 18 I started getting bruises on my shins which then later we realised it was the first development of NLD.

This is a massive struggle for me being in my early 20’s. I cannot wear skirts or dresses. Even in unbearable heat, I wear jeans because I’m tired of the questions.

At home, I avoid looking in the mirror and hate anything that involves taking my clothes off including showering and getting dressed or undressed. I even get bathe in the dark so I don’t have to look at my legs covered in horrible scaring which appear to be worsening even though I’ve tried every possible solution such as various creams, steroids and injections.

I find this harder to deal with than diabetes itself, even after all these years. I feel trapped. Can anyone help me with any advice who’s living with NLD?

Thanks

 

[Marie 2]

I am not familiar with NLD at all, but want to give you some hugs. That sounds rough. I hope someone can come along that can help.

Here's a page here on it. It seems that people that have it are commonly diabetics.

https://www.diabetes.co.uk/conditions/necrobiosis-lipoidica-diabeticorum.html

 

[Geordie_P]

I'm sorry to hear about this: my wife has very severe scarring from operations she had when she was a teenager, and while it's not quite the same as your issue, she was very self-conscious about it when she was younger, then grew less and less so: I see them as a sign of strength and survival- that she beat a difficult disease and went on to do a lot of things that should have been impossible for her: if you've been living with T1 all this time, then I think you must be pretty strong too. I know it's not much, and I don't wish to speak glibly on a difficult issue, but your 'battle scars' mark you out as brave to me. I hope you can find some help and relief.

 

[rochari]

Hi Charlotte

I’ve also NLD (type 1 here too) and being a bloke those marks are always covered by jeans or trousers but I fully appreciate and understand everything you say. I have found it difficult to deal with because of the continous pain and irritation. Yup, I’ve had all the treatments you’ve had.

Just a thought but I know the NHS provide quite a few cosmetic treatments and I wonder if there is a skin specialist you could be referred to by the diabetic clinic? They may provide guidance and support and be able suggest/provide some form of ‘medical’ make-up that could be applied onto the marks to match your natural skin colour.

Bill

 

[CherryBerry29]

Hi Charlotte

I’ve also NLD (type 1 here too) and being a bloke those marks are always covered by jeans or trousers but I fully appreciate and understand everything you say. I have found it difficult to deal with because of the continous pain and irritation. Yup, I’ve had all the treatments you’ve had.

Just a thought but I know the NHS provide quite a few cosmetic treatments and I wonder if there is a skin specialist you could be referred to by the diabetic clinic? They may provide guidance and support and be able suggest/provide some form of ‘medical’ make-up that could be applied onto the marks to match your natural skin colour.

Bill

Hi Bill,

If you don’t mind me asking, how severe is your NLD and has it become dormant at all?

I have had make up from the changing faces charity but nothing really works and mine has become indented and dark coloured so it’s extremely hard to mask.

Believe me I’ve tried endlessly with make-up, fake tan and searching for boots that cover it up so I can at least try and wear a dress. I sit there for hours covering up so I can at least try and go out in the sun for a while with it looking a bit presentable.

To be fair mine hasn’t been painful, only itchy at times. I feel like creams help keep it moisturised and the steroid injections slow the spread.

Thanks,

Charlotte

 

[rochari]

Hi Charlotte

My NLD runs from a few inches below my knee down to the lowest part of my shin. I’d say it is roughly 2.5 inches in width, wider in a few parts. I have not noticed any change in size or redness this past month or so, though.

The doctor at the diabetic clinic who diagnosed it said there really was no known cure and sometimes it can disappear as quickly as it arrives. Perhaps mistakenly, I took that statement with a huge pinch of salt. He went on to say that the only treatment at the moment are the creams/injections we have both been using. He did point out that first I should use the steroid cream, wait 5 minutes then on top, place a barrier cream. The major problem I have always had is that when the material from my trousers/jeans etc touches the area it is painful. I also am uncomfortable when in bed because the warmth makes it hurt more. I'm sleep deprived!

I’ve always been a believer in alternative treatments so taking some advice from a friend who specialises in that, I tried aloe vera and later, rosemary. Unfortunately neither worked. One thing that I have a notion to try is light therapy (red or blue types). Months ago, I read on an American forum some comments from folks saying this type of therapy helped a lot with NLD. However, once again and if true, light therapy has its downsides and in some cases can actually cause serious skin problems, not cure them. I’m biding my time with this though as I’m not going to spend a lot of money on something until I have better evidence that it might help.

You know, I've been 56 years on insulin now and this has been the trickiest thing to deal with over all those years.

Bill

 

[CT94]

Hi Charlotte,

I'm 25 and have had it on my shins since early teens. I agree, it's the worst and hardest part of diabetes and wish something could be done about it. I've had the make up but really didnt find it helpful as it wasnt a close match.

Charlotte x

 

[CherryBerry29]

Hi Charlotte,

I'm 25 and have had it on my shins since early teens. I agree, it's the worst and hardest part of diabetes and wish something could be done about it. I've had the make up but really didnt find it helpful as it wasnt a close match.

Charlotte x

Hi Charlotte,

Have you any tips or tricks into dealing with this? Also... do you smoke? I have recently become 1 month smoke free. I often wonder if smoking triggered the NLD.

Charlotte x

 

[SiobhanR]

Hi Charlotte

Reading your post it reminds me so much of myself when i was your age. I developed Type 1 as a 22 year old and by 25 I had the signs of NLD. I also got grannuloma annular (wrists and hands) double whammy. I was traumatised. Looking up Google all i could see were the worst case scenarios. I was so self conscious and didn't want to wear skirts and was afraid of the questions. I scoured the internet looking up treatments. The diabetic doctors didn't really understand my response and how upset I was as a young girl. At the time there wasn't many Chinese Herbal Doctors in Ireland so i flew to London to find someone who had treated NLD succesfully before. I returned from Heathrow with a bag full of disgusting tea. After drinking that and doing some acupuncture, it seemed to clear up. Am not sure if it was a placebo effect or if i just stopped focusing on it but within the next year it all but cleared up. You really had to squint to see it.

Last year I broke my hip and by the summer I have seen the NLD break out again on my left foot and my hand. Also, i have been going through a very stressful time with my father being very ill. So i think the stress and trauma of the hip fracture may have had something to do with it (similar to psoriasis etc).

So it comes and goes and now that I am older I have accepted it as part of me and my story. It doesn't stop me wearing dresses, shorts, skirts etc. I just don't focus on it at all.

I think the hardest thing was having no control over it. As its not related to your BG control and there are no treatments to treat it. You are told is physiological or cosmetic so not really painful. I would try a bit of acupuncture just to see and that way at least you feel you are doing something. There is always Vichy camouflage make up. And for those people that are so inquisitive tell them its a sporting injury that you got while scaling Everest or something.

Chin up and feel free to reach out if you have any other concerns as I realise how upsetting it can be.

Mind yourself