My Spoonie Sisters

Battling Cushing's: Jewel’s Journey


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What happens when a determined spirit meets a daunting diagnosis? Join us as we hear from Jewel Dukes, who courageously shares her battle with Cushing's disease. Discover the emotional rollercoaster she faced, from the challenges of weight gain, depression, and anxiety to the life-changing brain surgery to remove a tumor from her pituitary gland. Jewel's story is not just about enduring a rare disease; it's about the powerful connection and hope she found within a community that supports and uplifts her.

The path to finding support after a rare disease diagnosis is seldom straightforward. In our conversation, we explore Jewel's journey to connect with those who truly understand her struggles, especially on platforms like Facebook. We dive into the dual challenges of Cushing's disease and Lipoedema, shedding light on the pain and limited treatment options due to insurance obstacles. Jewel shares her wisdom on creating a practical toolkit for symptom management and the necessity of self-care, even when life seems overwhelming.

As we discuss holistic wellness, the episode also highlights the benefits of alternative therapies such as acupuncture and stretching for recovery and performance. We tackle the financial barriers to accessing these therapies and stress the importance of listening to one's body. Moreover, we underscore the need to support our friends who may be silently struggling, and how businesses like Crafted with TLC provide creative outlets and community support. As we gear up for Rare Disease Day, we celebrate the resilience and solidarity that Jewel and others find in shared experiences.

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Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.

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My Spoonie SistersBy Jen Weaver

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