Interior design star Genevieve Gorder wants to live in the light, not in her illness. What does that mean, exactly? For Genevieve, who has both Lyme disease and Hashimoto’s thyroiditis, it means refusing to stake her identity in her health challenges. On today’s episode, Genevieve talks to me about the role that learning plays in her journey with Lyme and Hashimoto’s, how a home can be healing, and how she maintains her sense of positivity and remains mightier than her illness.

Learn more about Genevieve and check out the show notes here.

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Monique Gore-Massy is a lupus survivor living purposefully. At the beginning of her journey, her debilitating symptoms diminished her sense of hope, tested her faith, and challenged her identity. On today’s episode, Monique and I talk the incredible support system that helped lift her out of the darkest period of her condition, her advice for navigating relationships and chronic illness, and why--especially as a woman of color--she feels driven to use her voice to advocate for others with lupus.

Learn more about Monique and check out the show notes here.

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This week, I’m so thrilled to present a very special guest: my mom, Norine Spero, who has been a caregiver for me since I was born. My mom and I are very close, so I found it really incredible that there were parts of her story--and my story--that I had never heard before. On this episode, we talk about the long journey to obtain my Job’s syndrome diagnosis, the doctors who listened to me (and those who had less-than-great bedside manner) and why, above all, she follows my lead when it comes to my health.

Learn more about my mom, Norine and check out the show notes here.

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Nitika Chopra was diagnosed with psoriasis, a chronic skin condition, at age 10. At 19, she was also diagnosed with psoriatic arthritis. On today’s episode, Nitika and I talk about the emotional and physical challenges of growing up with a chronic illness, and how she came to embrace little acts of self-love--even if she didn’t call it that at the time. We also discuss her faith in God, her shift to pivot her business to serve the chronic illness community, and how her heart plays a role in all of it.

Learn more about Nitika and check out the show notes here.

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Gunnar Esiason believes cystic fibrosis drug development is in its golden age, and that’s good news for people like him. Gunnar was diagnosed with cystic fibrosis (CF) at age two, and since then, he’s relied on an intensive treatment regimen to manage his symptoms. On today’s episode, Gunnar and I talk about why he feels a sense of promise around CF research, how he copes with his condition using humor and transparency, and his two jobs, both of which he loves: CF advocacy and coaching ice hockey.

Learn more about Gunnar and check out the show notes here.

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As a physician at the NIH, Dr. Alexandra Freeman treats patients with rare diseases who have exhausted the easy options. On today’s episode, Dr. Freeman and I talk about what makes the NIH so different from other medical organizations--and how that impacts research and medical discoveries. We also discuss the challenging and rewarding aspects of her job, and why patient-focused care is so important to her work as a physician specializing in primary immune deficiencies (Job’s syndrome in particular).

Learn more about Dr. Alexandra Freeman and check out the show notes here.

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While sorting through her mother’s belongings, Becca Skolnick made an interesting discovery: a printout of an article her mother had written. The article mirrored her real life in so many ways; it was advice that her mother had put into practice over the course of her 32-year journey with scleroderma. On today’s episode, Becca and I talk about who her mom was--a person who had a remarkable way of connecting with people--and someone who Becca seeks to continue to honor through her work and writing.

Learn more about Becca and check out the show notes here.

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Akilah has been diagnosed with pericarditis, coronary artery spasms, and orthostatic hypotension, but she’s still searching for a reason why she’s experiencing intense and chronic pain on the left side of her body. On today’s episode, we talk about how why she no longer thinks of her health journey as a temporary bump in the road, why she decided to start talking about her health with clients, and how she advocates for herself, despite the bias she encounters as a woman of color, so she can find answers.

Learn more about Akilah and check out the show notes here.

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In pursuit of answers for her daughter, Tracy Shaw went on a diagnostic odyssey. Thanks to Tracy’s research, using data from Madison’s many hospitalizations and visits with 21 doctors, Madison was diagnosed with common variable immune deficiency (CVID) at age 13. On today’s episode, Tracy and I talk about the judgement she faced as a single parent and caregiver, why she was inspired to tell her story and work for change, and how she navigates her role as a safety net for Madison.

Learn more about Tracy and check out the show notes here.

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In his mid-twenties, Sah D’Simone’s life as he knew it changed in an instant, and he entered the darkest episode of depression he’d ever had. Realizing that his mindset had to shift, Sah embarked on a journey of self-healing and compassion-seeking that led to his career as a meditation teacher, author, coach, and speaker. On today’s episode, Sah and I talk about the moment he realized meditation had opened a door, and why he’s passionate about making his practices accessible to marginalized communities.  

Learn more about Sah and check out the show notes here.

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