January 10 2016

Neurofibromatosis Type I (NF1) is a single gene disorder associated with cognitive and behavioral deficits. While there is clear evidence for poorer social outcomes in NF1, the factors underlying reduced social function are not well understood.

Am J Med Genet A. 2016. Long-term treatment of neurofibromatosis 1 with ketotifen. A report of three cases.

My wife was diagnosed with neurofibromatosis. She has the kind that causes her severe pain on a daily basis. Doctors say she has NF1, but she shows all the signs of having Schwannomatosis. The only thing that gives her some (very little) relief is the pain medications the doctors have her on. The doctors have no answer for any cure, or any permanent pain relief. So we research the web frequently. The latest thing I found that looked promising was several articles about Bee Propolis. I immediately went out to buy some. So far, no improvements that we can see.