MamaT
New member
- Joined
- Jul 21, 2022
- Messages
- 1
- Reason
- Lost a loved one
- Diagnosis
- 00/0000
- Country
- US
Sorry for the long rambling post.
Seven members of my family have died from ALS. The gene that runs in our family is the FUS gene. We thought the disease had mostly burned itself out in our family. However, a cousin was recently diagnosed with ALS at age 26. My grandmother, J, and her sister must have passed on the mutation because they each had a child who died of ALS and tested positive for the FUS mutation. J is the great grandmother of this cousin. His grandmother (J's daughter) recently died at age 79 and did not have ALS. His mother (J's granddaughter) is in her 50's and does not have ALS. His only other relatives who had ALS are his great aunt (J's daughter) and the daughter of this great aunt. Hopefully, that all makes sense.
My mother (J's daughter) is in her late 60's and does not have ALS. The family members in her generation who have gotten ALS died in their 50's. Those in my generation have died in their 30's. I am in my mid-forties with no ALS symptoms. We are both past those benchmarks so we assumed that we were in the clear until this cousin was diagnosed. I have small children and now I'm concerned for their health. The family members in their generation die in their late teens or early twenties.
The recently diagnosed cousin has not had genetic testing done (I think). With the FUS gene, does it often skip generations or is it more the case where if you get the mutation, then you get ALS?
Seven members of my family have died from ALS. The gene that runs in our family is the FUS gene. We thought the disease had mostly burned itself out in our family. However, a cousin was recently diagnosed with ALS at age 26. My grandmother, J, and her sister must have passed on the mutation because they each had a child who died of ALS and tested positive for the FUS mutation. J is the great grandmother of this cousin. His grandmother (J's daughter) recently died at age 79 and did not have ALS. His mother (J's granddaughter) is in her 50's and does not have ALS. His only other relatives who had ALS are his great aunt (J's daughter) and the daughter of this great aunt. Hopefully, that all makes sense.
My mother (J's daughter) is in her late 60's and does not have ALS. The family members in her generation who have gotten ALS died in their 50's. Those in my generation have died in their 30's. I am in my mid-forties with no ALS symptoms. We are both past those benchmarks so we assumed that we were in the clear until this cousin was diagnosed. I have small children and now I'm concerned for their health. The family members in their generation die in their late teens or early twenties.
The recently diagnosed cousin has not had genetic testing done (I think). With the FUS gene, does it often skip generations or is it more the case where if you get the mutation, then you get ALS?