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Maoko

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Hello everyone,
I 'm french, my father died of als in 2015, he had done genetic testing but the results went after his death and then nobody told us anything. We all assume that it was sporadic. Then, in 2016 my sister went under a IVF procedure and needed the results, bingo: c9orf72.
At this time our kids were recovering from my father illness and death and we didn't have the strength to tell them out of nowhere.
Now, I 'm 45 and experiencing since a year cramps and fasciculation all over the body and the tongue, I have an appointment with a neurologist.
I will or I will not have als but, I know that I need to tell my 4 children (15 to 25 years old) that we are at risk.
How did you do that? How young people beginning their live receive such a new? Or should I wait and if not ill go testing first? What did you do?
Thank you for your advices and sorry for my english..
 

Nikki J

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PALS
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04/2014
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US
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MA
Unless one of your kids is likely to start a pregnancy before you get tested wait. You are 50/50 so your kids are either 50/50 or no increased risk. Testing here takes less than a month after the blood is taken. There may be mandatory wait times after counseling there. In the UK there is a month before you can have it done.

There are treatments in the works now for c9. Either way your kids are likely fine. I would tell the adult kids if you are positive. Unsure about the younger one(s)
 

Maoko

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Lost a loved one
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Thank you for your answer.
Yes, now it seems the best to do.
I will wait for my neurologist appointment and if good news for now, I will go for testing. The procedure takes 3 monthes with appointment with counselor, psychologist, psychiatrist..
At first I didn't want to know, but when I see that I am perhaps micmiking ALS out of unconcious stress, I understand I have to know. And if negative, I will feel like saving my childrens.
And yes, having C9 means that there is a lot of research done and I truly believe that for next generation things will change.
Thank you for this forum.
 
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