We’d like to say a massive thank you to Maryna Kolochavina, PharmD, PhD, PMP and Director of the Five Voices Consortium, Ltd. for the phenomenal illustrations of our Season 2 guests!
Maryna has created these illustrations on a voluntary basis for The Rarely Heard Podcast and has illustrated:
Rebecca Butcher – Episode 1: Poland Syndrome
Bodies and boobs from adolescence to advocacy
Rebecca was born with a rare condition called Poland Syndrome, which caused one of her chest muscles to be deformed, leading to only one breast being developed.
Rebecca spoke about her experience with diagnosis and interacting with healthcare professionals; and how her belief that Poland Syndrome didn’t really affect women led her towards advocacy and connecting with a wider community of people like herself.
She wants to see a world where those with ‘deformities’ like hers are represented and visible.
Erin Paterson – Episode 3: Huntington’s Disease
Hard choices, pursuing motherhood and seeing the good side
Erin is a Canadian author and public speaker, who tested gene positive for Huntington’s Disease (HD). Shortly after, she began suffering from depression and learned that she was infertile. Despite this crushing news, she stayed determined to have a family and live a joyful life.
Erin is the author of All Good Things: A Memoir About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness. She is also the founder of Lemonade Press, a publisher that’s focused on empowering people by helping them write and share their own journey in inspiring anthologies.
Erin lives in Toronto with her husband Daniel and her daughter Emma.
Kevin Schnurr – Episode 5: Alport syndrome
When your life changes overnight: finding hope, taking action and giving support
Kevin experienced renal failure at age 26, which turned his life upside down overnight.
He talks about the experience of diagnosis, subsequent dialysis for two years and receiving a living donor transplant from a close friend.
Kevin’s desire to help the rare disease community led to him becoming involved with the Alport Syndrome Foundation in 2014 before taking on a full-time position in 2019.
Art influences the way we think and the way we feel. The influential American artist, Jeff Koons, expressed this nicely in comments on teaching about art and creativity. He said, “The art is never in the painting that you’re looking at or the surface of the sculpture. The art is inside you. When the lights at the museum go off, nothing is happening there. But within you everything exists.”