54: Episode 53 - Invisible People: Making the Rare Seen

In this Quest Podcast episode, we chat with a former pharmacist turned singer/songwriter who lives with Generalized Myasthenia Gravis. Dania Quill has devoted her time and expertise to create inclusive spaces for those with disabilities and deliver advice, inspire action, and make us feel closer through song while sharing stories of resilience and positivity. While offering her followers a voice and a new perspective, she joins us to share her experiences, expertise and advice when it comes to navigating life and following your dreams.

Listen to her song “Invisible People” that MG Holistic has chosen for the 5 year Anniversary video and official MG Conference Song: https://daniaquill.com/track/4291421/invisible-people

Transcript

Guests:

Daniä Quill fell in love with the guitar when she was just six years old, but coming from a family of medical practitioners she chose pharmacy as her profession. She was enjoying a successful career as a hospital pharmacist, reserving music for weekend hobby time when it all came to a screeching halt. One Halloween evening Quill fell, then fell again and couldn’t keep to her feet. “I didn’t hurt,” she recalls. “I could feel everything normally, I just couldn’t move.”

For the next two years she saw neurologist after neurologist, some who even accused her of lying, before she was finally diagnosed with Myasthenia gravis. MG is an autoimmune neuromuscular disease that results in intermittent periods of weakness or partial paralysis of the body’s voluntary muscles. Quill’s case turned out to be refractory to standard treatment, leaving her vulnerable to exacerbations and crisis - the loss of the use of breathing muscles. And along with her MG came the rather rare complication of dysautonomia that causes episodic loss of her ability to digest food. Ironically, this resulted in the necessity for IV feeding for the IV feeding specialist pharmacist. Through all this, Quill lost her job. But more devastating to her was the weakness in her muscles that made her believe she could no longer play or sing.

But she became determined to share her music with the world. Lacking the stamina to play long sessions she taught herself to record her songs, coaxing her muscles and voice to sustain long enough to lay down one sound bite at a time. A recent video got over 16K views on TikTok, but the proudest moment for Quill was knowing it resulted in the search for “Happy things to cheer you up.”

Connect with Dania:

• Website: beacons.ai/daniaquill
• Instagram: https://www.instagram.com/dania_quill/
• YouTube: https://www.youtube.com/@DaniaQuill
• TikTok: https://www.tiktok.com/@daniaquill
• Facebook: https://www.facebook.com/profile.php?id=100082825453336
• Spotify: https://open.spotify.com/playlist/37i9dQZF1E4wquf9Gi2WL9?si=NOMIQZkGQYC0S-ndsOrt4g

Host:

Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational