From J D Faccinetti, cofounder and chief editor – My guest today on the Pituitary Podcast is someone I’ve had the pleasure of knowing since 2019, Risa August. Risa is a patient advocate, an author, and an endurance athlete who happens to live with acromegaly. When we first met, she was newly diagnosed and getting ready to ride her bike from the Canadian border all the way down to Mexico which, if you know anything about what these conditions can do to your body, is nothing short of amazing.
In this episode, we talk about what newly diagnosed patients are going through, the challenges that can overwhelm even the most centered person, the potential isolation, and how hard it can be to find good information even when it’s out there. We get into something we care a lot about: the gap between all the great medical research on acromegaly and the practical, everyday guidance patients many times need: how to exercise, how to eat, how to live. Risa shares about the grief of letting go of the athlete she used to be, and how mindfulness helped her find her way back to a fuller life. We focused on things like nutrition, exercise, mental health support, identity grief, learning how to switch your brain to the ‘Off” position with mindfulness, and all the help needed to rebuild a fuller life.
It’s an honest, warm, and genuinely useful conversation. I hope you and enjoy it as much as I did.
Risa August shares her path becoming an advocate. She found that many patients, like her, struggle to understand their conditions and the information available. It’s crucial to demystify these rare diseases, especially when doctors often don’t have the answers. Risa noticed that while there’s more awareness now, patients still feel lost amidst a sea of information. Don’t let overwhelm stop you! You’re not alone in this journey.
Let’s keep the conversation going. What do you wish you’d known sooner?
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