Empowered Patient Podcast History of Living with Spinal Muscular Atrophy with Patricia "Pidgie" Panzarino
Patricia Panzarino, otherwise known as Pidgie, was born with spinal muscular atrophy, SMA, a severe progressive neuromuscular disease. As a singer and songwriter and one of the oldest women living with SMA, Pidgie is celebrating the release of her new album, Just Breathe. Her experience of successfully taking Evrysdi from Genentech has given her more energy and enthusiasm.
Pidgie elaborates, "They didn't know as much when I was born. I was six months old and did not achieve the milestone of crawling properly. My mom took me to the doctor. I had an older sister who had it as well. She was 12 years older than me, so they said, "Here we go again." They called it Amyotonia back then. But as far as a solid diagnosis of blood tests and DNA and stuff, truthfully, that was three years ago. But SMA used to be diagnosed clinically. So I knew I had it, but it was a different way to diagnose it."
"Before the medication, you're talking 61 years of lifestyle—great parents kept me active. My father adapted things for me to participate more fully. For example, we had a boat that you could sleep on with a flying bridge, and he took a Hoyer lift that you use to transfer, put it on the flying bridge, and hoisted me up, so I could pilot this 31-foot boat. I was kept very active, taking vitamins and eating healthily. I never really did drugs or got really into alcohol. I just tried to keep a healthy balance and positivity until the medication. Now I'm still doing all of that because that really helps. You can't take it and just party and not eat well and stay up late and not sleep."
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