00:00:00:06 - 00:00:20:13
Maegan
When I first googled “PNH,” there was like maybe one article that came up. You know, it was something, and I clung to it so much. But really, like what I'm excited about for the future and with myPNHteam is to have other people who have PNH to bounce things off of because it’s so rare. There’s really not a lot out there,

00:00:20:13 - 00:00:56:01
Maegan
and I think having friends that also have it could make a huge difference. Even if you’re not fortunate enough to have family assistance or assistance from friends, like there are pathways forward to at least having some form of self-determination. Medical providers and social workers helped me settle a foundation on which I could get government assistance. I could be in the situation that I’m currently in.

00:00:57:00 - 00:01:27:05
Maegan
I’m trying to take the time to rest and to just enjoy existing in my body. Even if I can’t, you know, have a job in the traditional sense, and I have dealt with financial troubles because of that and because of my illness. But right now, I’m lucky to have an amazing support system. I feel like, in a way, I’ve been blessed because this time where I’m not working in a traditional sense has allowed me to actually dream big and prepare myself to follow those dreams.

00:01:27:05 - 00:01:46:04
Maegan
I really want to write a book about my experiences. I really want to be an advocate for disabled people, and I’d like to be a little bit better at guitar and bass. I would like to show my paintings in galleries and just get all of the practice that I can and really just live a life where I’m doing what I love.

00:01:47:22 - 00:02:02:02
Maegan
There’s a beauty to living on and being strong and taking care of yourself, even if your life is different than other people’s. My name is Maegan Voss. I’m a writer. I’m an artist, and I am a member of myPNHteam.