Re: Genetic Link?
From what I've read (and believe me, I've read almost everything I've been able to hunt down, from badly written web sites to detailed, academic listings), there appears to be a genetic factor in dystonia, originating in the DYT1 gene, at least in early-onset childhood dystonia. It is speculated that secondary forms of dystonia are caused by brain injury, environmental stresses and certain medications, but that a genetic tendency predisposes one toward such development.
It's really quite fascinating and no doubt would be more so if I weren't afflicted with the damned disorder.
Hope I've helped.
Cinthia
Re: Genetic Link?
Mike,I wrote you a comprehensive comment regarding this posted question, to your private e-mail. SD, per se (as a focal dystonia), is generally never passed from parent-to-child but neurological proclivities (which could result in Parkinson's, various dystonia's, essential tremor, etc.) are genetic. Often a *trigger* is involved in adult-onset dystonia, which could set off a neurological response that you didn't even know was part of your genetics. Adult-onset cases (such as SD, et al) are deemed "primary" (mine...clearly genetic) OR "secondary" (variety of causes...toxins, viruses, accidents, mysteries, etc.). In 10 years of research, most of what I have learned has been from NSDA symposiums, this BB, Internet searches and meeting over a hundred SD'ers in person. I always tell people I am lucky because I know what caused my SD (definitely genetics...with a robust family-history of Parkinson's). Others wonder about theirs and often say, "why me?" Good luck in your quest. --Lynne
Re: Genetic Link?
My mom has had torticollis most of her life (it's a type of distonia, where her neck shakes uncontrollably, especially when she's stressed). I didn't realize the connection until I read that torticollis was a form of distonia. My SD started when I was 30 years old. I just recently read an article about medications causing (or worsening) SD, and the one medication I've been on daily since I was 26 is listed. It makes me wonder whether I would've developed SD if I hadn't been on this medication, knowing that my mom had a form of distonia, too. It makes me worry about my 14 year old son, who hasn't shown any symptoms of anything, yet, thankfully. But knowing that it could pop up at anytime makes me worry.
Re: Genetic Link?
HI. I've had SD for 30 years and no other family members are afflicated but there are 4 multiple sclerosis victims including my mom. Wonder if anyone else has this in their family. Would rather have SD than MS any day. Worry about my kids a lot and think my 33 year old son has MS.
Re: Genetic Link?
Hi Roxanne,
I am in my 24th year with SD and just diagnosed myself on the internet and found this wonderful bulltin board last year. I spent years going to doctors but never was able to get a diagnosis, now I know where the doctors are who know of SD, thanks to this bulletin board and all the friendly, helpful people on it.
I just wanted to say that I'm sorry to hear of your SD dilemma and of your family members having to suffer with MS. I have accepted the genetic link to SD because of the fact that other Neurological problems seem to run rampant in my family also. I don't know of any other cases of actual SD in my family with the exception of one aunt who had an "odd" voice ( I vaguely remember hearing it long ago) but my brother has MS, 3 uncles and a nephew who have other types of Dystonia and several cases of Parkinsons among great aunts and uncles.
I wish you and your family the best and know that you've found a great place for info and friendship/understanding in this bulletin board.Dawn Smith
Re: Genetic Link?
Mike, I have always been told that SD is not inherited, but my mom was just diagnosed about 2 years ago. I was diagnosed in 1992. She always teases that I gave it to her! Neither of us have any other dystonias or parkinsons, etc.
Re: Genetic Link?
Okay, I'll weigh in on this one (but not with any practical information!) I will say that I understand, from a talk given at UC Irvine by Dr. Mitchell Brin, that there does seem to be a genetic component and that it manifests, as others here have posted, with related dystonias within the family tree.What I've been wondering about is if there is any relationship to Alzheimer's? I have discovered that my mother's family has a very strong genetic trend of Alzheimer's (like every single female who has lived beyond 70 in the last two generations.) I wish you well, Robin
Re: Genetic Link?
Hi Dawn,
Thanks for you reply and information about your family. I too was misdiagnosed and waited 15 years before seeking another opinion at my husbands persuasion. Luckily, the doctor I randomly picked from the phone book had studied at the University of Miami with a doctor who specialized in SD. I got lucky as I could've easily picked a doctor who had no clue! A week after being diagosed, I read an article called "Lost Voice" in my readers digest so I guess it was just my time to find out what made me talk like I did. Went to Miami in '90 and have been gettin botox ever since whit varying degrees of sucess. When they work well though, it's like a miracle and life becomes normal.
thanks again, Roxanne
Re: Genetic Link?
Roxanne,I just had to respond to your post. My SD first started in 1977 or 78 when I was still in my teens. I lived in Naples, Florida..was born and raised there but moved to S.C. in 1988. I immediately set out going to all kinds of doctors in Naples and Ft. Myers from the very first symptom of SD ( had no clue what it was and thank God it was very mild for years). I spent lots and lots of money and time but never got any diagnosis, just guesses with prescriptions for all kinds of allergy meds, valium and other things that did me no good at all. What caught my attention in your post was the doctor in Miami! Naples is approx. an hour away from Miami and I never even thought to try looking for help there! DUH! I hated to go there as the traffic was so bad etc. but the typical trend for Naples residents was to go to Miami when specialists needed to be seen and I just can't believe I never did.
OH WELL. Also, we've had a subscription to Reader's Digest since 1980 but I never recall seeing the "lost voice" article.
Re: Genetic Link?
Hi Mike,
A study done in Australia by Profesor Don Edgar (using SDers and a control group) concluded that it was extremely rare for SD to "run in families" for this group of patients. I was a part of this study, have no history of Dystonia, Parkinsons, and movement disorders at all in my family. I was worried about my daughter geting SD and my ENT, Neurologist and Speech Path have all reassured me that the chances are absolutely miniscule. I'm not really too worried about her, the way medicine is going she wont have a prob even if she does get it - and i'll know all about it , will know what it is, where to go and what to do (unlike my 6 years of misdiagnosis!!). There are people in the study with a family history but they seem to run "against the grain" here in Oz ( and it wasn't necessarily SD, but other forms of dytonia like writers cramp)...so can't really answer your question except to say that I think there's great hope for the "next gen" at any rate, whatever they inherit :)
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