Neurofibromatosis - a different NF

[Twilight]

Ever since I first saw Nerd Fitness shorted to NF, I've had this weird association in my head. "NF" has meant one thing to me for the last five years: neurofibromatosis.

 

Gillian Anderson promotes NF awareness and has a page on her website about it:

Neurofibromatosis, pronounced Neuro-fi-bro-ma-to-sis (NF for short), is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere in the body at any time. This progressive disorder affects all races, all ethnic groups and both sexes equally. NF is one of the most common genetic disorders in the United States (one in every 3,000 to 4,000 births), even though not many people are familiar with it.

 

 

One of my kids has it. She's only five years old, and she's already had more medical procedures than most adults. She's getting four MRIs per year, she went through 70 weeks of chemo, and she's loosing the vision in one of her eyes because she has a tumour on her optic nerve.

 

Fortunately, a lot of the cancer research going on these days is applicable to NF, and my kid has been able to benefit from the big improvements that have been going on in the last few years. It just blows my mind that a genetic disorder that's so common is relatively unknown, so I wanted to start a thread about it, even though it's not exactly a cheerful subject.

 

Education + awareness = progress, and hope for better treatments down the road!

[elsfaire]

What a frustrating condition! I am glad that your daughter's most recent round of treatments has been positive and is currently stable, but how tiring! I am glad that you started a thread - as much as I am into health and birth/baby stuff, I have never heard of this relatively common genetic disorder.

 

Have you ever looked into glyconutrients? They are carbohydrates the body uses in cellular communication and the immune system. There are a TON of studies on the role of individual glyconutrient sugars in enabling the body to identify invaders more readily, including tumors. I was not able to find any specifically on this condition (neurofibromatosis, right? ), but there are a lot if you look up "cancer" and the individual sugars on Pubmed. The 8 sugars considered essential in the body and called glyconutrients are: glucose, galactose, fucose, xylose, mannose, n-acetylglucosamine, n-acetylgalactosamine, and sialic acid (aka N-acetylneuraminic acid). Most people get more than enough of the first 2 in our diets, and the body is supposed to get the rest from fresh-picked fruits and veggies, and make small amounts when needed. Most of us are deficient, though. In addition to fully ripe and fresh-picked fruits and vegetables, glyconutrients are readily available in most medicinal mushrooms, and many supplements are now available, too, at least in the US. I have never looked in a health food store in Canada, so not sure about there.

 

Other helpful terms to search for in the studies are glycosylation, glycoproteins, and glycolipids.