Made Visible

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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When Lucy Wiese was three years old, she was diagnosed with a rare disease called Job's Syndrome (or Hyper IgE Syndrome). For Jan Wiese, Lucy's mom, that was the beginning of her journey as a full-time caregiver. On today's episode, Jan and I talk about the trajectory of her daughter's serious illness and the experimental treatment Lucy received at the NIH, how she and her husband have navigated caregiving for Lucy while also parenting their son Joel, and her hopes for Lucy's future and her own.

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

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When Emily Sause first started experiencing symptoms of narcolepsy in college, she wasn't even sure what was happening. It wasn't until she asked students and professors, who confirmed that she had been sleeping in class, that she realized something wasn't right. She was officially diagnosed with narcolepsy, and since then, has sought both self-awareness and acceptance of her condition. On today's episode, we talk about why she has embraced her curiosity about her condition, mysterious qualities and all.

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

Follow Made Visible on Instagram and Facebook.

Provide us with feedback on the podcast here.

When Emily Sause first started experiencing symptoms of narcolepsy in college, she wasn’t even sure what was happening. It wasn’t until she asked students and professors, who confirmed that she had been sleeping in class, that she realized something wasn’t right. She was officially diagnosed with narcolepsy, and since then, has sought both self-awareness and acceptance of her condition. On today’s episode, we talk about why she has embraced her curiosity about her condition, mysterious qualities and

When Joe DiNardo discovered he'd been living with a brain tumor for almost two decades, he relied on his meditation practice to help him face his own mortality. Several years later, when his wife Marcia was diagnosed for Stage IV pancreatic cancer, he relied on that practice once again to help him find his way as a loving caregiver. On today's episode, Joe and I discuss why brain surgery was life-changing, and how a feeling of unconditional love was at the core of his experience as a caregiver for Marcia.

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

Follow Made Visible on Instagram and Facebook.

Provide us with feedback on the podcast here.

When Joe DiNardo discovered he’d been living with a brain tumor for almost two decades, he relied on his meditation practice to help him face his own mortality. Several years later, when his wife Marcia was diagnosed for Stage IV pancreatic cancer, he relied on that practice once again to help him find his way as a loving caregiver. On today’s episode, Joe and I discuss why brain surgery was life-changing, and how a feeling of unconditional love was at the core of his experience as a caregiver for Marci