Journey to Diagnosis
Ana: Hereditary ATTR amyloidosis, it's kind of a devastating disease. It's hard to watch your family suffer through it and not be able to do anything.
Don: With the symptoms, I do have some neuropathy in my hands. Like, if I go on a bike ride, two miles in to it, my hands are numb. Simple things around the house, like you know if we wanted to repaint a room, you know, you'll get about a quarter of the room through and you just, I just have to stop and just kind of look at your hands like, you know, work, work with me here.
Sandie: One of the things that really bothered me was my feet. And my hands. I didn't have feeling. Every doctor I've gone to, had to look it up. I haven't had a doctor those past 13, 14, 15 years that knew it when I walked in. And that's disheartening.
Ron Sr: So, we see what this disease does. It's a terrible disease and you live with it. You got to keep going on or you have no choice.
Sandie: My hope is to get the word out there, I think. Make people realize that there's something out there.
Ana: We suggest educating your doctors about the disease as much as possible.
Ron Sr: By us learning about this disease, as much as we can, and educating our doctors, it's helping them, bringing them back in to the field where they think this is very interesting and they're learning more about it. And the more we can help them, the more they can help these new patients coming in with this disease.