duckquack
New member
- Joined
- Mar 19, 2014
- Messages
- 1
- Reason
- Loved one DX
- Country
- US
- State
- North Carolina
- City
- Raleigh
Greetings everyone,
I am a beginner here but I will quickly mention my situation in hopes that some of you can shed some light on the topic.
ALS runs in my family and I have been aware of this since I was a small child. My father's mother died of it and he has had 2-3 siblings die of it. He was also diagnosed officially last week. This was a bit unexpected because for most of my life he has said he didn't believe he had ALS and was going to be fine.
Well lo and behold he was mistaken and I am now in a bit of a conundrum as to what my own next steps are for my family. My dad said that his mutated gene is SOD1 but he was not sure on any more specifics past that. He did mention that his doctor said he inherited the gene "recessively" but i'm not exactly sure what that means or how easily that's identified.
My brother and I are now at a crossroads as to whether or not to get tested for our sake and the sake of our families (32 & 27 years old). My questions are below and I would appreciate any insight into this:
1) My dad has the mutated SOD1 gene and likely received it from his mother. Now from what I gather, the chances of my brother or I also receiving the mutated SOD1 gene is 50% each. Now if either of us were to get the mutated gene, what THEN are our chances of actually acquiring the ALS disease in our life? Is it ALSO 50% each or is it more like 99%?
2) I've read some information regarding being a carrier of the gene and this being able to pass it to your children, but not actually acquiring the mutated gene...is this any different than the above ?
3) I have also read information regarding how the gene is inherited...e.g. dominant / recessive / XY. What is this about specifically in terms of ones chances of acquiring ALS and a mutated gene?
Thanks for any help in this matter....it's...confusing
I am a beginner here but I will quickly mention my situation in hopes that some of you can shed some light on the topic.
ALS runs in my family and I have been aware of this since I was a small child. My father's mother died of it and he has had 2-3 siblings die of it. He was also diagnosed officially last week. This was a bit unexpected because for most of my life he has said he didn't believe he had ALS and was going to be fine.
Well lo and behold he was mistaken and I am now in a bit of a conundrum as to what my own next steps are for my family. My dad said that his mutated gene is SOD1 but he was not sure on any more specifics past that. He did mention that his doctor said he inherited the gene "recessively" but i'm not exactly sure what that means or how easily that's identified.
My brother and I are now at a crossroads as to whether or not to get tested for our sake and the sake of our families (32 & 27 years old). My questions are below and I would appreciate any insight into this:
1) My dad has the mutated SOD1 gene and likely received it from his mother. Now from what I gather, the chances of my brother or I also receiving the mutated SOD1 gene is 50% each. Now if either of us were to get the mutated gene, what THEN are our chances of actually acquiring the ALS disease in our life? Is it ALSO 50% each or is it more like 99%?
2) I've read some information regarding being a carrier of the gene and this being able to pass it to your children, but not actually acquiring the mutated gene...is this any different than the above ?
3) I have also read information regarding how the gene is inherited...e.g. dominant / recessive / XY. What is this about specifically in terms of ones chances of acquiring ALS and a mutated gene?
Thanks for any help in this matter....it's...confusing