Is this hereditary


Posted by jenny , Feb 22,2001,23:52   Archive
HI EVERYONE.
This is Jenny from NZ. I hope this finds you all well 'N' happy. It is raining here and we are all hiding inside for now.
My daughter is 16 and is dreading ending up with, as she puts it "mum's eyes" I have read several postings mentioning BEB affecting family members. As no-one else in my family has BEB we figured it wasn't hereditary. It's not very commom to have families affected by it, IS IT?
I was 32 when my eyes first went "bad" After seeing 22 Doctor's, I was diagnosed with BEB. First, I was told I had Myasthenia Gravis and treated for it. Of course the treatment didn't work. For three years everyone just thought it was "in my head" and I just blundered thru' losing friends who couldn't understand. So my story is really a carbon copy of most BEB mates.
We don't seem to be as well informed over here, as you all seem to be.
I had to learn all the tricks by myself as the Dr's only know how to treat it, not how to live with it and were no help at all. I had the injections in Auckland for 5yrs and they only lasted a few weeks, I thought that was just how it goes. Then we moved to Christchurch, in the south Island, and the Dr there was great, he studied my eyes and put the jabs where they were needed and then I could go 3mths between jabs. Now I go back to Auckland, but to a different Dr and they are still good. I do wear dark glasses all the time tho'.
You all have been very helpful to me and I thank you for that. It has been great reading pages and pages of postings and realizing that how I feel about things and how I have dealt with things is really very common. Thankyou everyone.
This bb should be made compulsory for everyone who beleives we are not for real. You could most likely all write a book on how you have been treated since you joined the blinky parade. Things people say like, Oh I can do that to, you can see when you want to see, it's in your head, you need anti depressants and the list goes on. The people who have had to live us could write an equally funny book. Well I'm sure my kids could. I took up playing the drums, I have always loved them but it's one thing I didn't need eyes for. The kids would try and shut me up, by turning the light off, Ha ha, that only made it better for me.
Well I better stop going on now and wait for a reply on my HEREDITARY thing.
Cheerz! from ya new blinky pal jenny nz. xx



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Re: Is this hereditary

Re : Is this hereditary --- jenny
Posted by Virginia , Feb 23,2001,08:13 Top of Thread Archive
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



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Re: Is this hereditary

Re : Re: Is this hereditary --- Virginia
Posted by Mindy , Feb 23,2001,14:40 Top of Thread Archive
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



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Re: Is this hereditary

Re : Is this hereditary --- jenny
Posted by Shanasy in IL , Feb 23,2001,08:53 Top of Thread Archive
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?




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Re: Is this hereditary

Re : Re: Is this hereditary --- Shanasy in IL
Posted by Evelyn , Feb 23,2001,17:08 Top of Thread Archive
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



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Re: Is this hereditary

Re : Is this hereditary --- jenny
Posted by joanne johnson , Feb 23,2001,10:10 Top of Thread Archive
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.



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Re: Is this hereditary

Re : Is this hereditary --- jenny
Posted by Lynn Yarbrough , Feb 23,2001,13:10 Top of Thread Archive
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




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Re: Is this hereditary

Re : Is this hereditary --- jenny
Posted by Mindy , Feb 23,2001,14:35 Top of Thread Archive
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



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Re: Is this hereditary

Re : Is this hereditary --- jenny
Posted by Alan Phair , Feb 23,2001,15:16 Top of Thread Archive
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



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Re: Is this hereditary

Re : Is this hereditary --- jenny
Posted by Priscilla R , Feb 23,2001,19:43 Top of Thread Archive
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



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Re: Is this hereditary

Re : Is this hereditary --- jenny
Posted by Shirley-Arkansas-USA , Feb 23,2001,20:25 Top of Thread Archive
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.




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Re: Is this hereditary

Re : Is this hereditary --- jenny
Posted by Sally - in - Idaho , Feb 23,2001,22:11 Top of Thread Archive
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




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Re: Is this hereditary

Re : Is this hereditary --- jenny
Posted by grace anne , Feb 24,2001,01:30 Top of Thread Archive
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




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Re: JENNY

Re : Is this hereditary --- jenny
Posted by June in Toronto (June Floyd,June in Toronto), Feb 24,2001,06:36 Top of Thread Archive
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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