Lorraine171
New member
- Joined
- Jan 6, 2010
- Messages
- 9
- Reason
- Loved one DX
- Country
- US
- State
- MA
- City
- shirley
Hi everyone! This website has been a blessing for me. It has also been very difficult. I lost my mom almost 2 years ago to familial ALS. Her mother, her aunt, her grand mother and her great aunt also died from this devestating disease. I was one of my mother care givers, helping her to spend her last 6 months at home and not at a nursing home.That was her wish. That time was the most dificult and painful time of my life, but I also cherish every second I spent with her.
The first night I came across this website I had a very specific question in mind, but then after seeing just one post I've been lost in pages and pages of everyones words. Everyone here is blowing my mind by being so strong and loving and caring. I wish I had found this website 2 years ago. I have spent hours reading blogs, and crying non-stop. But it's been healing at the same time. Painful but healing. I hear what everyone is going through, and it brings me back to the horror that this disease is. I wish I could take it all away for everyone.
Since this gene is very dominant in my family I have felt compelled to be tested for the gene before seriously considering having children. I feel like i am obligated to do so, not wanting to put my children through losing their mother and possibly passing on the gene. I have a 50% chance of having the gene. Recently I have found out that if you have a positive test result for the SOD1 gene (which my mother did have) than health insurance can become very expensive and there are laws that protect insurance companies so they basically have the right to discriminate against you.
My mom begged me not to get tested, saying that you shouldn't live your life in fear. And she wanted to be a grandmother, so dammit, she wanted me to have babies no matter what. I have had a peace within myself that tells me I can handle the results. Part of me thinks that the reason for this is the 50% chance I don't have it, and then I see my own children and life! But I know that if do have it, i will be devestated but I still need to know, so that I have the chance to be a mom.
So my question to everyone is...IS there a way to be tested for the gene anonymously? A way to do it through a hospital or a study that would allow no one but the facilitators of the study to know the results? Any input would be greatly apprechiated! Thank you for listening.
God bless everyone.
The first night I came across this website I had a very specific question in mind, but then after seeing just one post I've been lost in pages and pages of everyones words. Everyone here is blowing my mind by being so strong and loving and caring. I wish I had found this website 2 years ago. I have spent hours reading blogs, and crying non-stop. But it's been healing at the same time. Painful but healing. I hear what everyone is going through, and it brings me back to the horror that this disease is. I wish I could take it all away for everyone.
Since this gene is very dominant in my family I have felt compelled to be tested for the gene before seriously considering having children. I feel like i am obligated to do so, not wanting to put my children through losing their mother and possibly passing on the gene. I have a 50% chance of having the gene. Recently I have found out that if you have a positive test result for the SOD1 gene (which my mother did have) than health insurance can become very expensive and there are laws that protect insurance companies so they basically have the right to discriminate against you.
My mom begged me not to get tested, saying that you shouldn't live your life in fear. And she wanted to be a grandmother, so dammit, she wanted me to have babies no matter what. I have had a peace within myself that tells me I can handle the results. Part of me thinks that the reason for this is the 50% chance I don't have it, and then I see my own children and life! But I know that if do have it, i will be devestated but I still need to know, so that I have the chance to be a mom.
So my question to everyone is...IS there a way to be tested for the gene anonymously? A way to do it through a hospital or a study that would allow no one but the facilitators of the study to know the results? Any input would be greatly apprechiated! Thank you for listening.
God bless everyone.