PRESENTATION NOTES
Disorder of the nervous system
· Affects how nerve cells grow
· Causes tumors to grow on nerves
Genetic
· Can be inherited or from a gene mutilation
Type 1 and type 2
· Type 1 = skin and bone deformities, potential learning disabilities
· Type 2 = problems with inner ear
Treatment
· No cure
· Surgeries can at least temporarily remove tumors
Living with Neurofibromatosis?
· Sense of isolation
Interview w/ girl and mother
Doctors: “She’s going to look like the elephant man in a few years”
Girl: “Other kids pick on you”
“People stare”
Mom: “It’s not contagious”
“She gets touched by evangelists”
Others: “People like that shouldn’t be in public”
Woman on Oprah
There have been several times when little kids see me and they'd just start crying
I built up a wall
I just pretty much secluded myself from people.
I would leave my house maybe once a month.
I thank [my family] now because I don't know what I would have done if I would have been secluded.
I want to let people know there's help and let parents know not to shelter their kids or people that are older not shelter themselves from society.
Steps of action being taken to improve living with NF1
· Support groups, awareness
· Many report that becoming actively involved in raising awareness for NF can bing an added sense of hope, community, and empowerment
· To an extent, change must come from outside NF community
Disorder of the nervous system
· Affects how nerve cells grow
· Causes tumors to grow on nerves
Genetic
· Can be inherited or from a gene mutilation
Type 1 and type 2
· Type 1 = skin and bone deformities, potential learning disabilities
· Type 2 = problems with inner ear
Treatment
· No cure
· Surgeries can at least temporarily remove tumors
Living with Neurofibromatosis?
· Sense of isolation
Interview w/ girl and mother
Doctors: “She’s going to look like the elephant man in a few years”
Girl: “Other kids pick on you”
“People stare”
Mom: “It’s not contagious”
“She gets touched by evangelists”
Others: “People like that shouldn’t be in public”
Woman on Oprah
There have been several times when little kids see me and they'd just start crying
I built up a wall
I just pretty much secluded myself from people.
I would leave my house maybe once a month.
I thank [my family] now because I don't know what I would have done if I would have been secluded.
I want to let people know there's help and let parents know not to shelter their kids or people that are older not shelter themselves from society.
Steps of action being taken to improve living with NF1
· Support groups, awareness
· Many report that becoming actively involved in raising awareness for NF can bing an added sense of hope, community, and empowerment
· To an extent, change must come from outside NF community