Never seen anyone with BEB?
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Posted by: Moderator-JB ®

02/24/2003, 20:31:49
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Of course each of us have a somewhat different 'look' to our eyes. Perhaps it will help some of you to see what my eyes look like most of the time. My left eye has 'Apraxia' along with the BEB, hence the non-scrunching appearance. It simply slides closed gently and then will open a while later somewhat like the up and down dance of a window shade.

Judy (who must either be brave or ..... to take a photo and post it so all can see what usually is hidden behind wrap-around sunglasses)

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Re: Never seen anyone with BEB?
Re: Never seen anyone with BEB? -- Moderator-JB Top of Thread Archive
Posted by: June in Toronto ®

02/25/2003, 07:57:31
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Thanks for the photo, Judy, I'm sure many of the new postees will appreciate seeing that they look like you and other beb'ers.

June in Toronto







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Re: Never seen anyone with BEB?
Re: Never seen anyone with BEB? -- Moderator-JB Top of Thread Archive
Posted by: rennie ®

04/21/2003, 20:34:40
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Judy
nobody knows what we go through untill your their. I sometimes get very discourage and cry and pray to god to send us some help or fine a cure for this ugly disorder . I started 1 1/2 yrs ago and the eye doctors I saw only told me that the twitching would go away someday. Their are alot of doctors who know nothing about this disease or disorder. And how we managed to get though the days on our daily chores or jobs we have to be able to survive. I can't drive anymore I don't visit anybody like I used to I try to stay home as much as possible very sentive to the bright lights and even with sunglasses with the darkest tint still can't see a thing.
May the good lord guide us always wherever we are doing whatever we do as our best.
Take care.
Love Irene






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Re: Never seen anyone with BEB?
Re: Never seen anyone with BEB? -- Moderator-JB Top of Thread Archive
Posted by: Lynn Yarbrough ®

04/23/2003, 12:32:41
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One of the most helpful things that I did after my condition was diagnosed was to get someone to videotape me in full spasm. What I observed that was most unexpected is that the spasms involve the full facial mask -- that part of the face that is hidden by the Lone Ranger's mask. I had never seen that before (you can't see yourself blink, no matter how hard you try, without a recording of it) and it has helped me to identify and inform other people who have the condition but don't know it yet.

--- Lynn

"Would the gift the giftie gie us
to see ourselves as others see us!"
-- Robert Burns







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