Video library

Transcript

Ron Sr: When I first discovered that I had the gene, nothing was going on in my body. I was physically fit. I was running five, six, seven miles a day trying to stay fit and lifting weights and stuff. Then I eventually found out that I had problems climbing up stairs. I'd climb up halfway up the stairs, walk up them, and I'd get tired and have to stop. Even when I was tested, and found out I have it, that's when it really started worrying me about my family. Not so much me. I can deal with it myself. It's my kids. What's going to happen to them?

Sandie: Their reaction? Disbelief. They didn't want to hear it. First thoughts were, "What about me?", of course.  

Don: Of course, I wanted to test for my own kids. Since I have five children, I wanted to know because if I did not have it, then they have 0% chance of having it. So, for me, it was important to know just for the simple fact that I needed to know what the plan was going to be for the children.

Ron Jr: Just knowing it is a big benefit because if you have no idea, and the disease catches up to you, you're going to be lost in the dark.

Ana: Unfortunately, it does cause a lot of anxiety, a lot of fear. To pick up whether someone is disease active or not, it causes a lot of anxiety of, oh, is this, you know, is it amyloidosis or is it something else? And so, you can never get a clear-cut answer on a lot of things. So, definitely it causes a lot of anxiety in my family.

Ron Jr: Testing early and know you have the disease, when it becomes active, you can attack it a little bit better, have a little bit more knowledge, a little bit more confidence that, you know, I know what this is, and now I know who to go to.  

Ron Sr: As soon as you find out, when you're tested, you have it, and then you're tested again to see if it's active in your body, that's when you need to start seeking medical help.  

Sandie: I want my kids to get tested within the next couple of years. I want my kids to experience as much of a regular, full life as they can.