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.
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