I was born with Nerofibramatosis and was diadnosed with NF. Is there anyone out there with both conditions? i know we are very rare.
Hi Den, just googled NF1…not too good, eh?
See it is a genetic disorder. My condition could turn out to be genetic too.(HSP) It is also quite rare…3 in 1,000 I think.
Like with NF1 there is a 50% chance of offspring developing it.
Do you have a support group for NF1?
My link is very tenuous. My father died of a rare (but not rare enough!) cancer that only follows asbestos exposure. However, I gather the neurofibromatosis (NF) genes strongly influence who is susceptible to this type of cancer. It’s NOT everyone who’s been exposed to asbestos.
Dad didn’t have neurofibromatosis itself, and was never tested (that I know of) to see if he did carry the faulty gene. It is likely most people with his type of cancer do, though.
I’ve often wondered if there was any link with MS. Have you been told there is, or is it just very bad luck?
Two female relatives on my father’s side had neurological disease - one was MS, and the other Parkinson’s. So I definitely think there was something up with the genes on that side. Then again, someone on my mother’s side died of Crohn’s, which I believe also has links with MS - so maybe I got a bad deal from both sides?
On the face of it, you wouldn’t think my dad’s rare cancer, and my MS, had anything to do with one another - especially as we know his was caused by asbestos. But if you look deeper, it might not be complete coincidence.
Hey Dan, I also have NF1 and PPMS but and yes it is very rare