Just what are they researching? (Serious posting)


Posted by Sally - in - Idaho , Mar 29,2001,14:15   Archive
Does anyone have information on specifically what research is being done for blepharospasm? We continually come up with possible connections and trails to follow here on the BB, but are any of the research people taking heed?

One of the strongest ties we keep returning to is that of chronic sinusitis and BEB. Yet the doctors we have mentioned this to just pooh-pooh the idea. We've also had squinting from childhood and the possibility of BEB starting way back then. Just numerous suggestions. Also, the poison in fluorescent lighting that bothers so many of us, not just with our eyes, but seems to seep into our systems.

There is also the genetic factor, which I understand is going to be stressed at this year's conference. Yet, when those of us with other family members who have this have mentioned it to doctors, they seem uninterested. I followed up on the posting on the opening page of this site where it says they are wanting family members to research, and was told they weren't interested ... only in siblings (mine is my mother, myself, and possibly one son developing it). Then Alan, who has several members of his family with BEB, including siblings, tries to be helpful by volunteering for family research and he is ignored.

So ... what do the researchers want? I would be interested in knowing what trails they are following at the present.

Sally in North Idaho




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