Hi,
I was adopted when I was young and did not know my full medical history. I just discovered that the C9 mutation runs in my family. Over the last 4 years, 3 people have died from this - my uncle and aunt from ALS and my mom from FTD. I am unsure if anyone else is currently affected in my very large family.I guess I am just looking for guidance regarding where to go from here as far as getting tested and participating in studies.
I also have a question regarding neurological illnesses caused by the C9 gene mutation. I was told that my mom basically lost her mind in her 40’s. I was told that it was probably due to “late onset” Bipolar Disorder. She was married for two decades, worked as a teacher and was a great PTA Mom to 2 kids. I was told that she suddenly started acting unlike herself, had affairs out of wedlock and conceived me at 45. She was never the same after. Here’s what confuses me: She was committed to a psychiatric hospital in her early 70’s and eventually diagnosed with FTD before she passed. Is it possible that her “breakdown” was FTD all along? Everything I’ve read says it normally is fatal within 15-20 years at the most.
Thank you so much for reading this.
-Lisa
I was adopted when I was young and did not know my full medical history. I just discovered that the C9 mutation runs in my family. Over the last 4 years, 3 people have died from this - my uncle and aunt from ALS and my mom from FTD. I am unsure if anyone else is currently affected in my very large family.I guess I am just looking for guidance regarding where to go from here as far as getting tested and participating in studies.
I also have a question regarding neurological illnesses caused by the C9 gene mutation. I was told that my mom basically lost her mind in her 40’s. I was told that it was probably due to “late onset” Bipolar Disorder. She was married for two decades, worked as a teacher and was a great PTA Mom to 2 kids. I was told that she suddenly started acting unlike herself, had affairs out of wedlock and conceived me at 45. She was never the same after. Here’s what confuses me: She was committed to a psychiatric hospital in her early 70’s and eventually diagnosed with FTD before she passed. Is it possible that her “breakdown” was FTD all along? Everything I’ve read says it normally is fatal within 15-20 years at the most.
Thank you so much for reading this.
-Lisa