Hi, I don't have EB, but I do have Cerebral Palsy, a neurological
impairment that renders me unable to walk at all and requires me to
use an electric wheelchair, personal chair assistance (16 hours per
day). I joined this forum after watching an episode of Extreme Make
Over: Home Edition and learning about Anthony Tom and Johnny Kennedy
The Boy Whose Skin Fell Off. Both of whom sadly died due to their
disease.

I'm writing about a eugenic future, in which most people with
disabilities have been eliminated due to future governmental
policies that only allow for allegedly perfect people to exist.
Disabled people survive living in attics, basements, and autonomous,
hidden communities. The novel is called Sanctum: Seven Stories of
Resistance and features an autonomous community called Haven.

The story features Riley who has EB and is in his mid-20's (or early
30's)and his wife Reyna who has Congenital Insensitivity to Pain
(CIDA), which is is also a very serious disability in which people
can injure themselves seriously like breaking bones or third degree
burns without feeling the slightest things because their brain
doesn't transmit the signal.

Riley succumbs to his disease and Reyna can't deal. She tries to
destroy herself by doing all sorts of dangerous things-jumping off
high things, kicking walls, rescuing people... Her friends help her,
but I'm not sure how the story ends.

I called DEBRA today and talked to someone who told me that it would
be okay if I joined this forum to ask you all questions. Please feel
free to Google me if you wish to confirm that my interest in
disability rights and issues is legitimate.

Some questions I have are:

1) What are the hardest parts of EB?
2) Is anyone here a parter of someone with EB? What effect does this
have on your romantic relationship?
3) How many bandages are needed per day? How much money does this
cost you. I read the EBAN list; I don't think think that's at all
fair!
4) Anything else I should know about EB.

Thank you for your time,
Sincerely,
Martina Robinson