Anybody else on here suffer with necrobiosis lipoidica diabe

Superchip

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Re: Anybody else on here suffer with necrobiosis lipoidica d

I can't even read that, does it have a more easily understood name ?
What is it ?
 

afc79

Member
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Type of diabetes
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Re: Anybody else on here suffer with necrobiosis lipoidica d

Hi superchip its the doctor version of ulcers that occur on your shins and feet mainly women get so im led to believe.
 

Superchip

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Re: Anybody else on here suffer with necrobiosis lipoidica d

Thanks afc79 clear now !
 

Terry K

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Re: Anybody else on here suffer with necrobiosis lipoidica d

Yes, I have sufferred from this condition since the age of 9 following a wasp sting to my lower right leg.

Now aged 58, both of my lower legs have a number of these blemishes, for want of a better definition, ranging from 0.5 to 6 cms diameter, all of which increase in size over the years; and were and continue to be initiated by any injury to the skin surface.

They are red, with clearly visible blood veins on display, shiny and having a very thin skin surface, are susceptible to further injury.

I refuse to let them, or any other difficulty arising from my 55 years as a Type 1 diabetic interfere with my enjoyment of life - and find their visibility is much reduced if I manage to secure a sun tan on my legs, during the summer months.

They are nothing to worry about, provided you take care of the impacted skin surfaces; in my case the application of "Savlon Antiseptic Cream", if I detect any additional scratches or similar damage.
 

afc79

Member
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Type of diabetes
Type 1
Re: Anybody else on here suffer with necrobiosis lipoidica d

Hi Terry k ive had mine for 18 years since I was 16. I was told originally that it was fungal infection as it wasn't really heard of. My shins are covered and I am very paranoid about them. I was unable to wear the short skirts like my friends as I had to wear compression bandages on both legs. Thankfully now they dont open very often but when they do I get the awful bandages back and take a trip to the doctors every couple of days. I am told manuka honey is very helpful. I find the sun doesn't help mine. They are very painful at times. I was curious to know if there are more like us as I've never met or spoken to a fellow sufferer and wanted to know how different people get them treated.

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Terry K

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Re: Anybody else on here suffer with necrobiosis lipoidica d

afc79

I was always advised that it was unusual for a male to suffer from this condition, and other than the link with a childhood wasp sting, there was never any mention of a fungal infection. It was some years before mine was diagnosed as NLD by a skin specialist (Dr Dowling) who brought all his assistants in to see it on a young lad, when normally only seen on girls.

Mine is clearly less active than yours and only painful when I actually hit or scratch them; I have never experienced them actually opening or ever been advised to wear protective bandages. It was once suggested that I had them injected with steroids, to see if that would make any difference, but that was many years ago and in view of the anticipated pain involved I declined the offer - they were looking to experiment rather than offer a permanent solution.

I have a number of quite old BDA magazine articles on the subject that advise:

"NLD is neither contagious or infectious",
"they can slowly increase in size and may eventually fade although they never quite disappear",
"that it effects up to 1% of all people with diabetes",
"necrobiosis doesn't seem to be linked to blood glucose control",
"the marks are caused by a disturbance to some of the cells of the skin associated with blood flow through the fine blood vessels (capillaries)"
"the patches are usually painless unless they are knocked and become ulcerated"

which suggest your fungal infection diagnosos might not be the case; that we cannot blame ourselves as I originally did for poor blood sugar control; that they may fade which some of mine now are.

The difference between yours and mine would appear to be that none of mine have yet to form ulcers when otherwise injured, for which you have my full sympathy as I can well imagine how difficult that can be!

This leaves me only to apologise for my glib statement on how I won't let any complications impact upon my life, as I had no idea when making that statement how detrimental an impact the condition was having on you.

Have you considered camouflage make-up for which you could probably get medical advice and/or assistance?

Regards - Terry
 

TheaP

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Re: Anybody else on here suffer with necrobiosis lipoidica d

Hi there

I was diagnosed with NLD when at uni. I'm not sure exactly where it came from , I think messing around one day led to a stone chip/scratch and slowly developed from there. The doctor didn't know what it was we tried steroid creams etc didn't really have much effect. I then got a much worse cut on the area and it got really nasty. I went to an ulcer clinic and went into full compression to help the wound heal (more intense than compression/flight style socks. It's a bit like a non set cast for a broken leg) for a month and since then I've had no trouble with it. Literally changed it in that month and has been getting fainter ever since.It is much less angry looking and feeling and apart from occasional dry patches with mild itchiness I have no trouble with it at all. The patch I have is around 10cm long, I think this is relatively small?? so not sure if going into some form of compression would help you at all??
Worth a try as it doesn't hurt at all.
Thea :)
 

weeezer

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Re: Anybody else on here suffer with necrobiosis lipoidica d

My mum has had a patch of this on her shin since she was in her late twenties (dx type 1 @24) she's 62 now, occasionally it's got worse but then heals up and is fine for years! Only causes a bother if its knocked.


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manxangel

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Re: Anybody else on here suffer with necrobiosis lipoidica d

Hi. I've just been told yesterday that I may have this on my leg. I've been referred to a skin specialist person.

Any advice or hints? I've only had it for about a year.


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GlucoseHugs

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Hi just seen this post after I posted a similiar question last year and thought I was the only person on here with this condition. I have mine on my right shin and have done for the past 6 or 7 years. Mine started as a small red mark, like a mosquito bite and now covers a large area on my shin. It took several years for mine to be diagnosed. I tried steroid creams which didnt have any effect and seem to spend most of the time covering it with cover creams but as it has caused a large dint in my shin, I am very self conscious about this.

I dont know if anyone has considered a Skin graft?? that was one option a dermotologist gave me.

Not sure if I fancy that procedure I just know that people comment on it when seen (Lack of tact) and makes me feel even more self conscious. I spent most of my days in jeans and trousers but sometimes, i want to feel like a woman and wear dresses without people pointing out the NLD.

Anyone else have this issue??
 

afc79

Member
Messages
18
Type of diabetes
Type 1
Hi I asked about skin graft but was told no as I would end up more scarred than I was already, also even with a graft if you bang or cut your leg it can still ulcerate, cover up skin make up is best I am waiting for my referral now. I to was like you so very paranoid about what people were saying, if they were laughing I thought it was definitely at me. I have decided to ignore them now, if they dont like it tell em to stop looking or to take a pic it lasts longer. I now wear my shorts and skirts in the warmer weather. I find maxi dresses are the best thing if your feeling uncomfortable and still want to be female. I have had nld for 18 years and we all suffer in silence. I hope this helps.

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Jenb85

Newbie
Messages
3
Type of diabetes
Other
Treatment type
I do not have diabetes
Hi, my name is Jenn and I was reading everyone's story on here about NLD. I suffer from it and I'm not diabetic, my grandmother has it as well and she is not diabetic either. It started on my right foot and it looked like a mosquito bite (2009) and now almost the whole top of my foot is covered, it has protruded around my ankle and up my shin. I now have it on my other shin and foot. I just found out what it was this year and the dermatologist that I'm seeing looked at it,looked up at me and says are you diabetic, I said no I'm not, she said does it run in your family, I said no, diabetes don't run in my family. The dermatologist is having me use steroid cream and it doesn't seem to be helping. I really wanted to know what could help it, it is very embarrassing and everyone stares at it. I'm very fair complected and I don't tan well. Even though I really don't care what people say or think about it, it's just really for me myself, it bothers me to look at it. I've used one cream for 3 months and no difference now I'm on to a stronger steroid cream for about a month and not seeing a difference yet. I do know it's very sensitive, sometimes I experience an itch and I'll reach down (not thinking) And scratch it and I'm like uugghh. If anyone could give me some insight about it, I would greatly appreciate it.... Thank you.
 

Jenb85

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Other
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I do not have diabetes
Hi jenb85 are sores open
No, I've had it for six years.... I didn't know NLD could open into sores. My doctor didn't go into detail about anything like that. My skin didn't ever spark a concern to me and one day I was bored and decide to Google it, and I learned what can happen. I was just wondering does it stop spreading? Or can you do anything so it less noticeable?
 

afc79

Member
Messages
18
Type of diabetes
Type 1
As long as you don't bang or cut them they should be fine I have had it 17 years but the docs don't no how to cure or how it starts it is not due to diabetes as I have been told after many arguments I to am very paranoid so I went changing faces and I got given some make up its fantastic you should give it a go
 

afc79

Member
Messages
18
Type of diabetes
Type 1
You can't really do anything I just use moisturising to stop it drying out I find steroid creams make the skin very easy to catch them as it thins the skin