Monday, March 21, 2011

Say Cheese!



While I was participating in a study about Neurofibromatosis and variablity in families at the National Institutes of Health in Maryland; I had the chance to meet with a group of dentists, who were specifically looking for abnormalities in the mouth, gums, jaw lines and teeth in people living with Neurofibromatosis.

Several studies performed, including the one done at NIH showed results that indicated that those who have NF, also have a higher that average chance for decay, and other abnormalities; such as tumor growth and jaw deformities.

I know for me personally, MOST of my mouth is either capped, or filled with silver.  No matter how much brushing, flossing or rinsing I do...I always seem to have 'something' going on, that requires treatment.


Why is this?  During my visit to NIH, my brother who also has NF1 was examined.  Now he is not the most hygienic, but the clinic noted that ALL of his teeth needed to go...Quite upsetting and embarrassing for my brother, I am sure.

One study I read, said that out of 110 volunteer NF1 patients, the results showed no connection between NF and dental issues....But with me just asking my Facebook NF family about this issue...I got an overwhelming response saying the opposite.

This is exactly the reason that more research needs to be done.  

Please Comment with YOUR Personal Issues Regarding This 
Maybe we can get dentists and orthodontists to take a closer look.

7 comments:

  1. my husband's teeth are ridiculously good...NF kid #1 has ok teeth, NF kid #2 has Disaster teeth...I always just thought it was because her teeth got shunned while kid #1 spent 2 years on chemo. NF kid #2 now also has a palate expander to make her teeth fit in her little mouth.

    Granted, my non-NF sister & brother have awful teeth no matter what they do, so...?

    Very interesting.

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  2. i have nf1 and due to this i have massive overgrowth of skin in the roof of my mouth and also slightly in the bottom of my mouth. They were going to remove it a few weeks ago but decided at the last minute it was too risky as i would probably bleed to death. The overgrowth has meant i have not been able to brush properly as i have large pockets of skin where food has entered and rotted my teeth below the gum.I only have a small percent of tooth left there now on each tooth at that top side. Had 2 extracted a month ago, But have been told if i dont have this skin removed i will end up losing all these teeth, and if it carries on growing possibly all my top teeth. Looks like i have to face up to losing them all as no surgeon wants to take on such a risky procedure.

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  3. I have a high roof of the mouth, as you know, but because of that surgery I had when I was born to crack open the bone between my nose and throat..As far as teeth go, they've been weird, a little crooked...but I think that runs in my family...The thing I ***HATE** hate hate hate hate about my mouth is my gummy smile. I wouldn't be half as self-conscience about my mouth if it weren't for that. So I've been pretty lucky.

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  4. I've got NF1 and have had been having fillings since I was a kid. Now, as an adult (40) I've already had one tooth and it looks like a second has now gone. Could well be a link

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  5. My 5 year old son has NF1 and an optic nerve glioma has very bad teeth! Few have broken off some are brown, no enamel. We are facing major dental work now!

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  6. I also have NF1 my teeth are in really bad shape.I hate to smile i dont show my teeth because they are in such bad shape.i cannot afford to have them all removed.i would love to and get dentures.I wish there was some kind of way.

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  7. I also have NF1 my teeth are in really bad shape.I hate to smile i dont show my teeth because they are in such bad shape.i cannot afford to have them all removed.i would love to and get dentures.I wish there was some kind of way.

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