Haley Hayes, a Pompe patient advocate, shares why advocating for essential medical equipment and treatment is critical for people living with rare diseases.
Transcript
You are not difficult when you advocate for yourself.
For the wheelchair that I’m in right now, we had to fight for over two years to get it. And I was under the age of 18 at the time.
And so my parents were doing all of the advocating for me. You know, I was doing a little bit of what I would want them to say, but ultimately, they were doing it all for me at the time.
Like, without this wheelchair, I have nothing. Like, I have to have this wheelchair. Like, I cannot walk.
My wheelchair is a necessity, and without treatment for my particular disease, I could die if I don’t have my treatment for a certain amount of time. Ultimately, my health would decline. So all of that is very important.
