Angel’s Story: Sharing Knowledge With Others
Speaker 1: Angel and I met in the Marine Corps. We all happened to get stationed in the same area, and the rest is history.
Angel: My family lives in a very rural, upstate New York area. In my immediate family, six out of seven of my grandfather's children have tested positive for hATTR amyloidosis. The closest amyloidosis center is approximately four hours away. That can seem like thousands of miles to someone who is sick with this disease.
It's tough. It's a lot of doctors' appointments and trying to make sure that everybody has what they need. Watching the people you love be affected by this disease is devastating.
Speaker 1: When Angel made the decision to get tested for hATTR amyloidosis, I was unsure how to take it. I tried to keep a straight face and hold strong and just reassure her. We'll just keep fighting for her like you've been doing for your family, and we'll have a new foundation to build on.
Angel: My decision to get genetically tested was tough. Do I want to know? Do I want to put that on my children? After learning that I did not carry the gene for hereditary ATTR amyloidosis, I felt guilty. How did I win that lottery? How do I tell my family?
Speaker 1: It's extremely difficult watching her get frustrated. I'm so proud of the work that she's doing and of the example she's setting for her children to fight for her family and the people that she loves. I know I'm lucky to have her.
Angel: You should always help those in the family who can't help each other, and this is my crusade. Getting the information out, reaching out to the amyloidosis community, and saying, "Hey, can we try this? Can we take this step?"
The Alnylam Act program has been so helpful. Those who were not able to be tested prior to the Alnylam Act have really been able to get those answers. Staying connected with the hATTR amyloidosis community is vital. It is probably the most important thing that can happen.
Speaker 1: Through the support groups, I feel there's hope for my children's generation.
Angel: hATTR amyloidosis devastates a whole family. My hope for the future is my nieces and nephews don't have to go through this. We need research. We hope that one day testing for this gene won't instill the fear that it does today.