[Blindtlk] Extreme photophobia/blindness only in light?

[Chris Nusbaum]

Hi Rene,

I don't have this condition, and therefore can't share any 
information spesific to this condition which would help him.  In 
fact, I'm totally blind and have been since birth.  However, I 
would encourage your friend to join the NFB and find a chapter 
near him.  One of the great things about the Federation is that 
we provide a great network of resources and support to all blind 
people.  With 50,000 members, I'm sure he could find a member of 
the NFB who has the same or a similar condition.

I also think it would be a good idea for him to go to one of our 
training centers: the Colorado Center for the Blind (CCB,) the 
Louisiana Center for the Blind (LCB,) Blindness Learning in New 
Dimensions (BLIND, Inc, in Minneapolis, MN,) or Blind Industries 
and Services of Maryland (BISM.) Attending one of these training 
centers would teach him the skills and alternative techniques of 
blindness; independent cane travel, daily living skills (done 
nonvisually,) Braille, adaptive technology, etc.  Much, if not 
all of the training is done under sleepshades, so I don't think 
he would have a problem with too much light getting through.  
This sleepshade training also gives the students practice in 
completing tasks nonvisually, and encourages (for students who 
still have residual vision) the use of nonvisual techniques 
instead of using a person's vision.  I understand that he isn't 
blind in the literal sense of the word; not even in the legal 
sense of the word.  However, if I understand your description of 
his condition correctly, he has a condition which prevents him 
from doing tasks with his vision because of his sensitivity to 
light.  Therefore, I think it would benefit him to learn the 
alternative techniques of blindness in a completely nonvisual 
way.  However, I don't presume to know what is best for him or 
what would benefit him; I don't even know him.  I am just giving 
you some suggestions which you can (if you'd like) take back to 
him and his wife, and hopefully they will give him some options 
of things to do.  I hope this helps!

Chris Nusbaum
Email and Google Talk/Keychat (on the BrailleNote) ID: 
dotkid.nusbaum at gmail.com
Skype: christpher.nusbaum3 or search for Chris Nusbaum
Twitter: twitter.com/chrisn98

"The real problem of blindness is not the loss of eyesight.  The 
real problem is the misunderstanding and lack of education that 
exists.  If a blind person has the proper training and 
opportunity, blindness can be reduced to a mere physical 
nuisance."
-- Kenneth Jernigan

 ----- Original Message -----
From: Rene Harrell <rjharrell at gmail.com
To: blindtlk at nfbnet.org
Date sent: Thu, 22 Mar 2012 07:09:04 -0600
Subject: [Blindtlk] Extreme photophobia/blindness only in light?

Hi all!

I have recently become friends with a woman whose husband has a 
medical
condition that essentially makes him extremely photophobic.  He 
gets
debilitating, crippling migraine pain and becomes completely 
blind/loses
all vision when he is exposed to light of varying intensity, but 
especially
direct sunlight.  He stays inside all day long.  If he has to go 
somewhere
during the day, his wife needs to drive, and he sits in the back 
with the
tinted window wearing a sleep mask.  At night, he can drive and 
use his
vision outdoors.  He can also use his vision inside with all the 
curtains
drawn etc.  etc.  to block out outside light, but he's in chronic 
pain from
the constant sources of light that break through.

Currently, he is unable to work or leave his house during the 
day.  He takes
care of their two children while his wife works, but they can't 
ever leave
the house during the day to even hang out and play in the yard, 
and I think
it's starting to wear on them all.  While he is not legally 
blind,
functionally he is in a lot of respects.  His quality of life is 
suffering
significantly and they're going this alone.  I asked if they 
would be
willing to let me reach out and see if I could connect them with 
some
people and resources, and they said yes.  So, I wanted to reach 
out here and
see if anyone has a similar light sensitivity issue that would be 
willing
to connect with him? I really think he could use a mentor that 
could start
encouraging him to think in nonvisual ways/techniques that could 
help him
think outside the box and enhance his quality of life, and by 
extension the
quality of life for his whole family.

Is there anyone on here that would be willing to share their 
contact
information with me to give to him?

Thanks so much!
Rene--- Mom to five wonderkids, including Miss Clare age 10, 
Retinopathy of
Prematurity

--
" I may not have gone where I intended to go, but I think I have 
ended up
where I needed to be."
-- Douglas Adams
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