[Blindtlk] Extreme photophobia/blindness only in light?

[Peter Donahue]

Hello Rene and everyone,

    The situation you describe matches the gentleman Dr. Jernigan describes 
in his article "A Definition of Blindness."He told a group of high school 
students of an individual who had severe headaches and eye pain when he 
ventured in to bright light and had to walk around with his eyes closed. 
Like this individual that man's quality of life was adversely effected. 
Although he couldn't be classified as legally blind he was considered 
functionally blind due to his  need to use alternative techniques to 
maintain his independence and maintain his quality of life. I'm guessing 
that he learned Braille, learned to travel with a white cane during the 
daylight hours, and learned many other blindness skills to allow him go 
function normally during daylight hours. You might want to give this family 
a copy of that article or send him the URL so they can read or listen to it 
themselves. He'll know that he's not alone and that there's value in 
networking with other blind persons who can offer assistance. Hope this 
helps.

Peter Donahue
----- Original Message ----- 
From: "Rene Harrell" <rjharrell at gmail.com>
To: <blindtlk at nfbnet.org>
Sent: Thursday, March 22, 2012 8:09 AM
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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