Re: Is this hereditary
Jenny,
There is a page on genetics and BEB on the main BEBRF site. I have included a link below. It might make interesting reading for you and your daughter. There are several posters who have family members with BEB.
Virginia in AL
Related link: http://www.blepharospasm.org/blephar5.html#A1
Re: Is this hereditary
Hi Virginia,
Thanks for posting the link. I've read these pages many times,
and I don't remember reading about the genetics of BEB.
My movement specialist is a geneticist and she believes the answer
will be found in genetics.
Mindy
Re: Is this hereditary
Hi Jenny!Welcome! Wow! 22 doctors...what a nightmare that must have been! I can't even imagine! As for hereditary...well about all I can say is my mother had meige for about a year when she was about 6 due to a stressful family situation. (I don't have meige, just BEB). My brother had Bell's Palsy (which is related to BEB) for about 6-8 months about 25 years ago. I've had BEB for about 2 years now. I'd say it's a bit of a toss up as to whether my BEB is hereditary or not. It could very well be coincidental. Who's to say?
Re: Is this hereditary
That's new one for me. I didn't know Bell's Palsy was related to BEB. My husbands father and sister have had Bell's Palsy. My husband had what the opthamologist thought was a small stroke in his eyes. He had double vision and had to wear an eye patch for six weeks. I'm almost positive his mother has one of the disorders described on the bb. I went to dinner with them last night, and her blinking, squeewing and body movements have become much more pronounced. This has been progressing slowly over the last several years. I really wish she were open to discussing it. Perhaps I need some of the cards to hand out too.
Evelyn
Re: Is this hereditary
I don't know any family members who have had this. I wonder if there are families that are more predisposed, than others. Of course, the cause is for the most part, unknown. I, for one, am waiting to see on that one.
Re: Is this hereditary
For a long time I thought BEB was NOT hereditary, but now it appears that there is a genetic effect, although not as common as genetic tendency toward colon cancer, for example. I now have to face the reality: my BEB probably IS genetic. My Mother had Parkinson's disease, which is related to dystonias, and my daughter has had Bell's palsy, which she might have gotten genetically from either of her parents (I have BEB, my wife had repeated bouts with Bell's palsy).Still, the odds are about 20-1 that this will never develop in your daughter, and even if it does, at least you have the knowledge and tools to deal with it. Annoying as it is, it's never fatal. But get good health insurance for your daughter: Botox IS expensive. --- Lynn
Re: Is this hereditary
Hi Jenny,
In spite of all you've been through with BEB, you sound delightful.
It was a great relief for me to find this board 2yrs. ago.
It finally put closure on the "it's all in your head" thoughts.
How could it be that people from all over the world have the same
symptoms?
As far as I know, there is no one in my family that has this.
Best wishes,
Mindy in NY - we had 6" of snow yesterday
Re: Is this hereditary
Jenny, anyone who questions whether this disorder is genetic only has to come to a restaurant when I go with my mother, brother and sisters and we all fight for the seats away from the overhead spotlight. I have many members in my family currently and can go back a couple of generations to remember relatives with the problem...alan
Re: Is this hereditary
I really hope this isn't hereditary. I have two children whom I wld hate to see suffer as I have.
All I can do is pray they never get this condition.
Priscilla
Re: Is this hereditary
jenny,
I don't know of anyone else in my family that has or had anything even similar to Blepharospasm. The only thing that I can relate any of this to is the fact that my mother, sister, brother and I all choke very easily. On water, air, anything. I've wondered if the choking thing is somehow related or a very mild form of dystonia. Oh, and my choking is getting worse. I'm just full of good news today. I believe that John or someone is going to have to give me another attitude adjustment.
I'm glad that you are with us jenny. We share our good times and bad. Mine just happen to be bad right now. I'm not always such a bummed out person.
Your kids sound like mine. Good naturedly teasing.
I'm glad that you finally got a diagnosis and now know that all your weird, psycho symptoms are all quite normal for us crazy people. :-)Shirley in AR.
Re: Is this hereditary
Hi Jenny ... My mother had BEB and had one of the early surgical "cures" in the 1960's where the 7th cranial nerves were severed at the side of her face just below the ear lobe. She had the surgery repeated three or four times, the last time causing one side of her face to droop and one eye to remain open. She badgers me constantly to "go have surgery," but none of the doctors I've talked to advocate that procedure anymore. They say it had negative side effects.In spite of a mother diagnosed with BEB, many doctors refused to consider that I could possibly have it. Then a neurologist handed me a pamphlet and underlined that it is oftentimes hereditaty. I dread the thought of my sons and grand-daughter possibly dealing with this, but perhaps we can help find a cure and they won't have to. I like your spunky style. Please hang in with us. Slly in North Idaho
Re: Is this hereditary
I've heard that it isn't hereditary as such, but tendencies towards similar eye problems can exist in the same family. With my family it's my sister and my mom. My other sister doesn't have a problem with her eyes.
Good for you that you are taking up drums - lights or no lights.
When my eyes feel more up to it, I'll have to read the other posts on this.graceanne in port orchard
Re: JENNY
Jenny, New Zealand sounds so far away and yet here we are talking on the web - great isn't it?
I've heard both sides on hereditary - it definitely seems to be so in Allan's family. In my family I remember my mother had a turned ankle, so perhaps that was a form of dystonia, but nobody has THE EYE PROBLEMS except me - and I pray that it stays that way.
I think I can hear the drums playing even from Canada - SOUNDS GOOD GIRL - GO GET THEM. Perhaps if you practice enough, you can come to Toronto and play in my husband New Orleans jazz band (I'd have to get permission from his usual drummer-perhaps we could send him over to NZ?) - wouldn't that be something? I'd invite all our bb friends and we'd have a big welcome-to-Jenny party. That would give me LOTS TO THINK ABOUT and I'd forget about beb for a while!
STay as well as possible Jenny
Love
June in Toronto
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