concernedwife
New member
- Joined
- Sep 21, 2021
- Messages
- 2
- Reason
- Other
- Diagnosis
- 00/0000
- Country
- US
- State
- PA
- City
- Philadelphia
Hello All,
I have so much respect for the members on this forum and certainly do not want to burden anyone. I am a nurse (although never in neurology) but am looking for some insight from people who have lived through some of these experiences...
My husband's family carries the C9orf72 gene. His father is one of 4 children. 2 of his father's sisters are positive for the gene (this has been confirmed). One has since passed away from ALS, the other is currently living with advanced FTD. Both were diagnosed in their 50's (age 52 and 57 at diagnosis). Of note, their father also died from "dementia" although I suspect it was FTD (he was in his 70's). My father-in-law and his other sister are currently both in their early 70's and healthy and both are adamant about not being tested for the gene. I understand, of course, that this is their decision.
My husband is 36 and we have 2 small children. He feels confident he does not have the gene since his dad is healthy and older than his aunts were at diagnosis. I understand this is probably the case, however not necessarily true. We can only be certain with testing. I, personally, would like him to be tested because I have read about some promising trials should he be positive for the gene. I am hopeful that by the time my children (currently 2 and 4 years old) would present with the disease there would likely be a treatment (or hopefully a CURE!!!!). I want to encourage my husband to be tested, but am not sure how to be supportive and understanding. Has anyone been in this situation? Would it be beneficial to know in your opinion? My feeling it that the science looks SO promising and knowledge is power, but I say that as a healthcare provider of course.
Looking for any insight. I very much appreciate your time!
M
I have so much respect for the members on this forum and certainly do not want to burden anyone. I am a nurse (although never in neurology) but am looking for some insight from people who have lived through some of these experiences...
My husband's family carries the C9orf72 gene. His father is one of 4 children. 2 of his father's sisters are positive for the gene (this has been confirmed). One has since passed away from ALS, the other is currently living with advanced FTD. Both were diagnosed in their 50's (age 52 and 57 at diagnosis). Of note, their father also died from "dementia" although I suspect it was FTD (he was in his 70's). My father-in-law and his other sister are currently both in their early 70's and healthy and both are adamant about not being tested for the gene. I understand, of course, that this is their decision.
My husband is 36 and we have 2 small children. He feels confident he does not have the gene since his dad is healthy and older than his aunts were at diagnosis. I understand this is probably the case, however not necessarily true. We can only be certain with testing. I, personally, would like him to be tested because I have read about some promising trials should he be positive for the gene. I am hopeful that by the time my children (currently 2 and 4 years old) would present with the disease there would likely be a treatment (or hopefully a CURE!!!!). I want to encourage my husband to be tested, but am not sure how to be supportive and understanding. Has anyone been in this situation? Would it be beneficial to know in your opinion? My feeling it that the science looks SO promising and knowledge is power, but I say that as a healthcare provider of course.
Looking for any insight. I very much appreciate your time!
M