E27: Gracie's Song
Mary Parker

E27: Gracie's Song

Gracie van Brunt – singer, songwriter, and rare disease survivor – was surprised when everyone in the world joined her in quarantine.

“Never, ever was I expecting anybody to be able to relate to that in the exact way that I felt, but now everyone's here,” she said.

In their own words: Young adults with rare disease logo“Everyone's in quarantine and everyone has to follow the same precautions and everyone has to have this dark cloud of the coronavirus hanging over their heads. And I'm so baffled sometimes because everyone is literally in the same boat that I was in for so long.”

Gracie, who was diagnosed at a young age with the rare disease Shwachman-Diamond Syndrome (SDS), started quarantine in June 2019 after a bone marrow transplant. Just as she was ready to emerge, COVID-19 struck, pushing everyone into quarantine with her.

Luckily for Gracie, she has a wonderful outlet: her music. She wrote and recorded her new EP “Day Zero” in quarantine, and recently released it to the world. The lyrics reference her experience living with and fighting SDS, and her music video for “Run, Run, Run” even features footage from her treatment.

Gracie is accustomed to sharing her story as part of her work as a patient advocate. She has helped many people, especially parents of children with SDS, to come to terms with the disease and how to talk to doctors who are unfamiliar with how the disease presents. She has also worked with the digital health company TREND Community to help them gather vital data on rare diseases, potentially helping even more rare young adults in the future.

To learn more about Gracie’s journey, listen now to her episode of Eureka’s Sounds of Science.