Necrobiosis Lipoidica

[rbeckska]

Hi there,
This is my first time on the forum, my daughter is 12 years old with type 1.
The other day i noticed a lump on each shin in exactly the same place, i thought they were bites, however i pointed them out today to her consultant at her 3 monthly check up, and he said it was possibly Necrobiosis.
Has anybody else been through the same thing, there seems no cure, and im worried in case they turn to ulcers.
Any advice would be much appreciated
worried mum

 

[Sonnyb2]

Yh if she going in the same place to do her injection she will get fatty lumps so she need to go arms legs tummy and bum I have type 1 since September 2013
Thanks sonny bluck
X


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[afc79]

Hi I have had necrobiosis since I was 15, I was told it was due to very bad control of my blood sugars they have since changed there minds and dont know what causes it now. Both my shins ulcerated after the shiny areas grew a bit, it was very very painful. They dont really know how to treat it but they used compression bandages and inadine (iodine mesh) on mine which worked sometimes. My legs are now ulcer free but very badly scarred if I knock them or cut them slightly 9 times out of 10 they ulcerate. The best thing she can do is to be careful not to sratch them. Its very difficult to shave your legs with these I dont know if your daughter does this yet but if she does never use a brand new razor as you are more likely to cut yourself, never let her wax for lots of reasons not just the ulcers. Mine legs dry out quite alot so I moisturise mine which helps (scent free) keep the skin from flaking off, as she gets older she may get paranoid over them and not wear the shorts or short skirts in summer the best thing she can do is just make out that they are not there and stand proud. People will stare at you just ignore it. If she does get bad scars the red cross do a skin make up to help cover over them. I hope I was some help.

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[rbeckska]

Hi I have had necrobiosis since I was 15, I was told it was due to very bad control of my blood sugars they have since changed there minds and dont know what causes it now. Both my shins ulcerated after the shiny areas grew a bit, it was very very painful. They dont really know how to treat it but they used compression bandages and inadine (iodine mesh) on mine which worked sometimes. My legs are now ulcer free but very badly scarred if I knock them or cut them slightly 9 times out of 10 they ulcerate. The best thing she can do is to be careful not to sratch them. Its very difficult to shave your legs with these I dont know if your daughter does this yet but if she does never use a brand new razor as you are more likely to cut yourself, never let her wax for lots of reasons not just the ulcers. Mine legs dry out quite alot so I moisturise mine which helps (scent free) keep the skin from flaking off, as she gets older she may get paranoid over them and not wear the shorts or short skirts in summer the best thing she can do is just make out that they are not there and stand proud. People will stare at you just ignore it. If she does get bad scars the red cross do a skin make up to help cover over them. I hope I was some help.

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[rbeckska]

Thank you for the info, since i last posted, i have been rubbing in E45 cream and they have slightly faded

 

[cheata]

Hi mom.... i am a 31 year old woman. I have lived with diabetes for 29 years, I have a beautiful daughter who will be 6 in May. Much like Ur daughter I got my first spot at age 14. It was devastating, to both myself and mother. We live in a very small town in Maine. NOBODY could give us any hope, not even a diagnosis. It was scary. I am sure u feel helpless, please don't. 17 years I have lived with these spots and have had very little problems. Some itching. People don't accept what isn't "normal" right . All you can do is continue seeing her doctor but just as important let her know everyday how beautiful and unique she is. I chose the name cheats because I was a counselor at Clara Barton Camp one summer and one of my campers said my spots where cool, they made me look like a cheata I'm sorry any child and mother have to face stuff like this but its truly how we handle it... good luck, and smile.. u guys will be ok

 

[cheata]

I just wanted to let u know I shave twice a month. Never any pain in 17 years of having this. I wear my spots proud. Love my shorts and that's why its so important to teach her self confidence

 

[mumof3boys]

Hi, I have had a patch of necrobiosis on my left shin for 14 or 15 years and it has faded since the birth if my third child (I don't now why) but it has never been a problem for me. I have been waxed, sugared or epilated regularly too with no adverse effects (although this wouldn't suit everyone)

When it was redder in colour if people asked what it was (which they rarely did) I just told them it was to do with my diabetes and no-one has ever been horrible abut it.

Hope this helps x x

 

[suskyna]

This necrobiosis can it look a bit like a cigarette burn? Im new to this, my 5 year old was diagnosed 2 weeks ago. A couple of days ago a small sore appeared on the side of her knee, she didn't know where it had came from so no accident at school or anything. It hasnt changed. X

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[Indiana91]

I've got it too, I'm 22 and have had mine for about three years.

You can get referred to a dermatologist who can prescribe creams to stop it from itching and growing.

You can also get special make up for it. It's part of the nhs and you can get it on prescription. You go to a special clinic and they match up the make up exactly to the colour of your skin to cover it. It's really good, it water proof and lasts for up to three days!
This is what I use and when I'm wearing it no one has ever pointed it out.

Hope this helps.

Indiana x



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[afc79]

The make up is no gd for me, my legs are very badly scarred and indented on both shins so I am unable to cover mine but they did start looking like a small burn

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[zebs]

I've had necrobiosis since a year after I was diagnosed type 1 (now over 25 years ago). At first it was very itchy, red and bumpy, and grew for about first 5 years - so about 6in long by about 2in wide on both shins. The doctor gave me the option of steroid creams but said that this thins the skin and may make it more prone to ulcerate...so I never used them.

Since then it has slowly settled, become less lumpy, and less sore and less red *looks more like a bruise).. Just have to be careful if I scratch or cut it as it does tend to ulcerate a little due to the poor blood supply to it - the skin looks shin and now quite numb. Had no treatment other than a bit of cocoa butter to stop it going dry - not really that noticeable now. But if its a bit scaly I remove them with selotape. The only problem is cosmetic and people being shocked when they see it - esp at first... asking if I've had skin drafts or burns. I think they are a bit disappointed when i tell them that its only a skin condition.

I would say not to worry, it doesnt have any real impact on my life - the only thing it stopped me doing was kick boxing on account of direct blows to the shin and I wear slightly thicker or patterned tights if i feel self concious about them

 

[David147]

Necrobiosis lipoidica diabeticorum ("NLD") is a rash that occurs on the lower legs. It is more common in women, and there are usually several spots. They are slightly raised shiny red-brown patches. The centers are often yellowish and may develop open sores that are slow to heal. Often a biopsy is needed to diagnose NLD.

NLD usually occurs more often in people with diabetes, in people with a family history of diabetes or a tendency to get diabetes. Still, the exact cause of NLD in not known. A similar condition that is often confused with NLD is granuloma annulare. Similar to the association of NLD and diabetes, it appears that a high percentage of persons with disseminated granuloma annulare have diabetes mellitus. The individual spots typically consist of a circular array of reddish to brown and slightly translucent bumps.