Maoko
New member
- Joined
- Sep 6, 2018
- Messages
- 2
- Reason
- Lost a loved one
- Diagnosis
- 09/2011
- Country
- IT
- State
- ER
- City
- ..
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..
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..