[Blindtlk] Extreme photophobia/blindness only in light?

Mon Mar 26 01:34:22 UTC 2012

Hi Peter, Ellen, and Rene,

Just something to keep in mind: while I totally agree with and 
echo Peter's suggestion to send copies of A Definition of 
Blindness to Rene's friend and his family, just keep in mind that 
the article was written in 1962.  So, if he wanted to contact the 
gentleman Dr.  Jernigan describes in the article as a possible 
mentor, he's probably either very elderly or has passed away.

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

"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: "Ringlein, Ellen" <ERinglein at nfb.org
To: Blind Talk Mailing List <blindtlk at nfbnet.org
Date sent: Thu, 22 Mar 2012 10:40:09 -0700
Subject: Re: [Blindtlk] Extreme photophobia/blindness only in 
light?

Here are links to various versions of "A Definition of 
Blindness."

HTML
http://www.nfb.org/Images/nfb/Publications/fr/fr19/fr05si03.htm

MP3
http://www.nfb.org/Images/nfb/Audio/A_Definition_of_Blindness.mp3

Cordially,

Ellen Ringlein
Manager, Independence Market
Jernigan Institute
NATIONAL FEDERATION OF THE BLIND
200 East Wells Street at Jernigan Place
Baltimore, MD 21230
Phone: 410-659-9314 Ext.  2421
Fax: 410-685-2340
E-mail: ERinglein at nfb.org

Support the NFB Imagination Fund by texting the word BLIND to 
85944 to donate $10 via your phone bill.

-----Original Message-----
From: blindtlk-bounces at nfbnet.org 
[mailto:blindtlk-bounces at nfbnet.org] On Behalf Of Peter Donahue
Sent: Thursday, March 22, 2012 12:47 PM
To: Blind Talk Mailing List
Subject: Re: [Blindtlk] Extreme photophobia/blindness only in 
light?

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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