How To Heal Necrobiosis Lipoidica

Strategies, Coping, and Understanding NL and NLD

Let’s Find A Cure

Darren-Cover

Hello!  My name is Darren and I have a skin condition known as Necrobiosis Lipoidica.  This condition becomes a real drag when it comes to every day life, and even minor cuts and abrasions can threaten life and limb.  I started this website as an encouragement to people who are not satisfied with a diagnosis of “wow you’re stuck with that… bummer.”

 

-Darren

read my story here

Also check out the resources page for Facebook groups where you can connect with others who are dealing with the same things as you.

The effort to rid myself of Necrobiosis Lipoidica  has definitely been a marathon and not a sprint.  My approach really has not changed significantly over the past few years.  Basically, I’m just refining and optimizing my strategy as I improve my overall health.

here are some frustrating facts

  • You can have a BMI in the normal range and still have NL / NLD.
  • You can be non-diabetic and not pre-diabetic and still have NL / NLD.

but..

  • When our BMI is higher than expected we are statistically more likely to deal with other health problems.
  • If BMI is high, reducing it to normal makes sense as the first step in improving our metabolic performance.

There are probably many layers to this issue, but for me BMI is something I can change so that’s where I’m working right now.  The last few years have shown me some success, and that the process takes time.  Dedication to the end goal and willingness to adjust strategy over time are vital to success.

Current strategy:

  • Aerobic exercise (jogging) 30 minutes 3 times weekly
  • Ketogenic Diet
  • Make a note of BMI at least every couple of weeks

Nothing fancy here.  Just consistency.

The ketogenic diet has been helpful over the last couple of years, because it helps me to achieve results and has proven to be a plan I can stick with over time.  I think that’s the key to an eating plan.  Something that yields results, and something we can stick with over time.  If you’re interested in a ketogenic diet, I recommend researching it thoroughly and connecting with a great support network.

Research is important.  Because you have NL / NLD your health profile is already complicated.  Many people use a ketogenic diet as a fad diet to drop weight.  Your journey is more serious, and your metabolism is unique.  Choose carefully and deliberately, and pay close attention as you go.

Ruled.Me Keto Website

Down 2 Keto Facebook group.

 

 

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I continue to operate under the assumption that something’s not quite right with my body’s ability to handle glucose.  My research on NLD always takes me to the radical hippie regions of the interwebs — and i’m fine with that — so today’s research sends me to websites that echo the notion that people with NLD tend to fall into the groupings of people with (from highest to lowest occurrence) Type II diabetes, Type I diabetes, and those with strong family histories of either of the types of diabetes.

This condition and diabetes go hand in hand.  Okay. I get it.  As one of those in the smaller grouping I consider myself a wildcard.  And regardless of whether my circumstances are self-made or luck of the draw I am heeding the warning signal that my physical body has offered me.  My approach is two-fold:

  1. I am trying to understand both T1D and T2D better, as well as the conditions which may precede development of either.
  2. I am vigorously attempting to reverse decades of poor diet and exercise habits, with emphasis on anything I can do to improve the way my body deals with glucose.

This year I switched my exercise routine from walking to running, hence the running shoes at the top of the page.  Originally I was stuck at a certain BMI and couldn’t break past it to the next goal on my way to the BMI recommended in the Newcastle study.  So running quickly helped me to break through that barrier.  As I’ve been doing it though, I’ve noticed an improvement in breathing and circulation, stamina, energy, etc.  It seems to have widespread benefits beyond burning calories.  And that’s giving me hope.  I’m hopeful that these changes are all in the correct direction – that somehow through changing my metabolism we can get the body working the way it was before this NLD showed up.

Improving glucose tolerance may just be scratching the surface, or may be misguided.  This could be a pancreas function thing, or a compatibility thing where my particular body isn’t liking something I’m putting in it.  It could be neither – I may be completely wrong, but why not focus as much energy on this idea as possible until a better idea comes along?  At this point I do not intend to acquiesce in my current state of being.

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A couple of weeks ago I had the opportunity to take some photos at an old barn that was being torn down.  Fantastic opportunity, and I dressed appropriately, but still ended up getting a minor cut on my NLD.  We all know that even minor cuts can be serious business with NLD so I’m watching the area closely and am ready to call the wound care center at the first sign of trouble.

With that said, it seems to be healing well so far.  Here’s how I’ve treated the wound:

  • Gently cleaned it with a DRY sterile gauze sponge within 30 minutes of getting the cut
  •  Covered it immediately with a Mepilex border
  • Began keeping it completely dry at all times

I’ve kept it dry even when bathing, and have changed Mepilex borders every couple of days as it has closed up.  Today, after about 8 days it seems to have closed up for the most part.

I hope this will be helpful to someone.

This post is provided for informational purposes only; please consult your medical professional for anything relating to wound care.

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5 Comments

  1. Keep up the interesting work. Great job starting this forum. Maybe by thed numbers people can come up with something demonstrative.

  2. Mieszkam w Polsce. Mam diagnozę necrobiosis lipoididica. Mój stan jest poważny. Mam zajęte podudzia od kolana z przodu a na lewej nodze też z tyłu. Od czterech lat lecze rany . W listopadzie 2014 zastosowano leczenie : Dapson, cyklosporyna Novartis, Sildenafil 100/doba. Rany zaczęły się goić, ale zmiany NL zeszły juz na kostki. Ktoś ma taki stan? Co będzie dalej?

    • Darren Taff

      July 8, 2015 at 3:21 am

      Ja przepraszam za opóźnienie w udzielaniu odpowiedzi . Niestety nie znaleźliśmy lekarstwo na ten stan , ale jest wiele osób na facebook wymienionych grup na stronie zasobów , a może się okazać, że przydatne pomysły . Mam nadzieję, że jest to pomocne dla Ciebie .

      http://www.necrobiosis.org/resources/

  3. Hello! Have you heard of the Newcastle Diet? It was a study done in the UK to reverse diabetes type 2 by severely reducing calorie intake like those who get gastric bypass surgery. The idea is that when you eat so few calories your body goes to stored organ fat like the liver and pancreas. It is said to reverse diabetes. I have had NL on my lower legs for about 5 years now and I’m going to try this diet to see if once my liver and pancreas are unclogged of fat if the NL improves. Stay tuned!!! In the mean time research the UK Newcastle diet for diabetes.

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