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Type 1 Necrobiosis Lipoidica

NannyPoppins

Active Member
Messages
41
Type of diabetes
Type 1
Treatment type
Insulin
Hi... Does anybody else suffer from Necrobiosis Lipoidica?
 
Thank you... I'll have a read.

Doctors don't say much about it unfortunately.
 
Hi, i have necrobiosis and have had it for many years, i have tried steroid creams etc but nothing has worked and unfortunately it is still with me. If you have any questions (although im no dr lol) please dont hesitate to ask

Laura
 
Lozj82 said:
Hi, i have necrobiosis and have had it for many years, i have tried steroid creams etc but nothing has worked and unfortunately it is still with me. If you have any questions (although im no dr lol) please dont hesitate to ask

Laura
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Hello and thank you... I have had it since I was 14 (I think) it has slowly grew over the years and I was chasing doctors for a diagnosis for a long time but recently found out its Necrobiosis Lipoidica. They said there is nothing they can do and it will just grow and grow...

I hate it, I've never seen anyone else with it and it knocked my confidence terribly as a teenager and still now. I've never worn skirts or dresses and still don't. I'm 27. I have it on my shin... perfect circle, bright red and about the diameter of a tennis ball. I know that it's not that big of a deal but to me it is... Can't seem to get over it. Maybe because I never knew want it was for many years...

I think I'm just curious to how others deal with it? Xx
 
I can see why it would be a big deal to you... I know I would feel the same way. I have excess skin from major weight loss and while it's not a medical issue, it affects my self confidence. I hope you find something that helps. Hugs xx
 
CatLadyNZ said:
I can see why it would be a big deal to you... I know I would feel the same way. I have excess skin from major weight loss and while it's not a medical issue, it affects my self confidence. I hope you find something that helps. Hugs xx
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Thanks CatLadyNZ xx
 
This is mine....like you, on my shin and in a circle, i have another 2 patches on the backs of my shins (one on each).

I like you used to be very conscious and avoid wearing skirts etc but overcame this and decided to tell myself that if people can go around with birthmarks on their face etc, i shouldn't let something that looks like a birthmark on my leg stop me from wearing what i want (i understand this may not help you to come to terms with it but this is how i managed to). Good luck x
 

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Thanks for sharing this picture... mine is very red compared to yours. I'm trying hard to have this attitude and just stop worrying about what people think... I'll get there one day. ☺ xx
 
Mine were very red to start off with (think i have had them about 15 years), i dont know what your hemoglobin is but i think mine have faded since i have my sugar under better control (7.5% is what mine is at, at the moment).

I'm sure you will get there, we just have to be strong! xx
 
I've had it for 13 years roughly. My sister (nurse) spoke to a college and she said it will fade with good control. I'm still waiting...
 
This is mine...
 

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Hey guys. I also have necrobiosis lipoidica and I'm just wondering have you ever tried anything to cover yours up. I have quite a large red patch on my leg and a smaller one on my foot. The foot doesn't bother me as much as my leg
I feel so angry at it when I wanna wear something nice and short.. Say I'm going in town with some friends I have to wear jeans or black tights just to cover it because I hate the way it looks.. Just wondered if anyone has any good solutions. I'm waiting to hear back from a place called changing faces to get some camouflage make up but in the process of a long wait...
Here is a picture of mine . As u can see it's not really a small one due to biopsy and a number of knocks and bangs and ulcers
 
Hi @sally_x

Sorry for the late reply (sure i had replied to this but maybe it didnt post or something!). I did go somewhere to get some special make up for it (cant remember what the place was called though - sorry). They gave me 3 different types of cream (2 colours and 1 base) and then a finishing powder, it covered it up quite well. I did for a while but got fed up in the end and couldnt be bothered with the time it took so only used it on special special occasions. Good look with seeing someone for yours x
 
I get this every so often. It took 6 months for my go to send me to the skin doctor. The nurse came to great me and she said oh you have NL" I get a cream and it disappears in days. I'd strong recommend getting a referral to the skin specialists they are great
 
I have tried numerous creams and nothing worked for me :-(
 
Mine came from the skin doctor I can't find it at no if I do I'll post the name of it but it worked so well
 
I also have this since two years. My GP has never heard of it, he referred me to a skin clinic in Mortimer Market. The professor there showed me off to all his colleagues, students, prescribed a cream and then - discharged me!
This thing is progressing fast on both legs, the ugly patches are bad enough but what really worries me is the thickening of the blood vessels and the already visible destruction of the tissue underneath.

Does anyone have some advise regarding swimming, hot bath or sun exposure please?

Best from London
Irene
 
Thanks but my real concerns are not cosmetic nature and i have seen this leaflet already, one of very few infos available online.
 
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