Neurofibromatosis and the DoD

[ChazII]

http://www.digitaljournal.com/pr/836618

Thanks to the Dept. of Defense more money has been awarded for NF research.

[phantom power]

1. I'm always happy to see more NF research, as my wife has it...

I admit I'm scratching my head over why the DoD would be interested in funding such research.

[ChazII]

2. Thank goodness for the DoD

They have been sponsoring research for over a decade. Without them there would be very little funding.

My son and I have NF1. My son is somewhat severely affected by it as he has a plexiform tumor that is on the left side of his face. Vision, jaw and hearing are impaired.

When I read folks here at DU wanting to slash the DoD's budget I cringe. It makes me wonder if folks know that the DoD's funds are not spent only on weapons.

Hope that your wife is healthy and that NF does not severely impact her life. Have you been to CTF or any of the message boards for NF. If you belong to FaceBook you can find information and support groups there as well.

[phantom power]

3. My wife spends some time on NF related groups and online resources

Her tumors were on her spinal cord (I think it's NF2-like, although it defied normal classification). On her 2nd operation, the surgeon removed two tumors the size of a grapefruit. There was spinal nerve damage from the surgery itself, and she'll live with that the rest of her life. Sometimes the pain is hard to witness. There's just nothing I can do to help her. But it's only intermittent. Her life is mostly normal. I'm extremely grateful for modern neuropathy drugs (and having health insurance that allows us to afford them). I'm not sure she'd choose to live with the pain if it was 24/7, and I don't want to ever find out.

I guess the "bright side" is that her tumors are internal, there's no cosmetic disfiguration involved like there is with some varieties.

I wish you and your son well. It's not an easy disease to live with, and medical progress on it is slow.