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New member
May 31, 2006
My question:

Im a woman 49, my father have died of ALS, 78, diagnosed six months before. I've have the suspiction that my grandfather also died of ALS, also at old age (>70), none of my father siblings (4 brothers, 3 sisters) have developed the desease, all of them have reached the seventies and even eighties, although one of them have been diagnosed of Parkinson. What are the odds, in relation to any other person, for me, of developing the desease?

Thanks for any opinion
Dear Al,

I certainly don’t mind about your questions: that is why I am here for!

Please excuse my English: as you probably notice, it is not my mother tongue.

Less then 10% of ALS cases are familial. The other 90% are sporadic cases that do not show heredity. The researchers think that many people who develop the SLA could have a predisposition to the disease which, while entering in interaction with other factors, like environmental factors, could start the disease. Important variety of genetic changes could be at the origin of the SLA.

It is more probable to think that, since you are the only affected person of your family, the form of SLA of which you are affected is of sporadic nature. This does not exclude the possibility of a transmission from this suspected predisposition.

Even if knowledge in genetics advances much, they are still fragmentary. We do not understand yet how the genetic and environmental mechanisms interact.

I hope that answers your question. For more explanations, do not hesitate to ask me more questions.

I will send the material necessary to your participation in research today, should thus receive it next week.

Again, thank you for your interest and your time,

Isabelle Thibault

Coordonnatrice de projets de recherche

Centre d'étude des maladies du cerveau

Centre de recherche du CHUM - Hôpital Notre-Dame

Pavillon Simard, local Z-8911

1560 rue Sherbrooke Est

Montréal (QC) H2L 4M1

Téléphone: (514) 890-8000 #24857

Télécopieur: (514) 412-7602

courriel: [email protected]

Hello bana. Welcome to our forum. Above is a copy of an email I got from a researcher on genetics and ALS. My question to her was as the first person in my family with ALS what are the chances that I was the first of the familial type and would I pass it on to my children. According to what I read i would think your chances are good of not getting it.
Hope this will ease your mind. For the benefit of readers you may contact Isabelle to take part in this important study. All that is required is 4 vials of blood and a questionnaire. Her email address is above. Al.
If your grandfather really did have ALS, the ALSA says your odds of getting it are 50%--the gene is autosomal dominant and the ALSA terms ALS cases as familial if two or more family members have the disease. However, since none of your father's siblings ever developed ALS it's unlikely (though still possible) that his disease is familial--the chances of only one out of eight siblings getting the gene are in the 1% range. If your grandfather did not have ALS and your father did, your chances are the same as everyone else's--about 1 in 450.
Very grateful, Al and Meg, for your information , thanks a lot
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