“A Diagnosis Changed Everything… and Nothing” | Kelly Berger (Rare Disease Story)

What happens when you finally get the diagnosis that explains your whole life… and what doesn’t it change at all?

In this powerful episode of ListenABLE, Angus sits down with disability advocate and podcaster Kelly Berger, who shares her journey living with an ultra-rare form of congenital muscular dystrophy, Collagen 6. After years of misdiagnosis, Kelly received her genetic confirmation as an adult, a moment that brought clarity, community and a new sense of direction, without changing who she fundamentally is.

Kelly speaks candidly about the emotional weight of diagnosis, navigating healthcare systems, building community, and what real accessibility actually looks like in daily life. From the realities of infrastructure in the US to the gaps between performative inclusion and genuine integration, this conversation goes well beyond awareness and into what meaningful change requires.

We also dive into Kelly’s podcast 'Wheel Talk', her advocacy work, and how she’s helping reshape how disability, rare disease and identity are spoken about in public spaces.

This is a conversation about resilience, identity, leadership and how visibility changes everything.

• Living with Collagen 6 congenital muscular dystrophy

• The emotional impact of finally receiving a genetic diagnosis

• Rare disease advocacy and disability representation

• Accessibility in infrastructure and public spaces

• Navigating healthcare systems and misdiagnosis

• Disability identity and pride

• Building community with and without disability

• Language, inclusion and allyship

• Performative vs meaningful disability representation

• Creating podcasts within the disability community

• Why visibility matters

Kelly Berger is a disability advocate, podcaster and rare disease community leader living with Collagen 6 congenital muscular dystrophy. She is the co-host of Wheel Talk, a podcast exploring disability, identity and lived experience through honest, accessible conversations. Kelly works actively in advocacy, accessibility awareness and rare disease representation.

ListenABLE is a podcast created to amplify disability voices, challenge stereotypes and explore what inclusion actually looks like in practice. Hosted by Angus O’Loughlin alongside Dylan Alcott, the show brings real stories, lived experience and meaningful conversations into the mainstream.

Podcast: Wheel Talk with Kelly and Averyhttps://www.instagram.com/thewheeltalkpodcast/