In this emotional episode of the podcast, Sierra speaks about her journey as a mother to Jack, who was diagnosed with the ultra-rare Warsaw Breakage Syndrome. She opens up about the complexities of Jack’s medical challenges, including a congenital heart defect, microcephaly, and severe growth restriction, all of which were discovered early in her pregnancy. Sierra emphasizes the importance of trusting her instincts and being Jack’s fiercest advocate in a healthcare system that often left her feeling overwhelmed. She turned her experience into action by creating Librarey, sharing what she learned to help parents in similar situations.

Sierra chose the song Make You Feel My Love by Bob Dylan.

Jamie shares her experience living with Hashimoto's disease, an autoimmune condition affecting the thyroid. She talks about how her symptoms, such as fatigue and joint pain, were often dismissed as normal, leading to a delayed diagnosis. We talk about how difficult it was for her to find a treatment for her narcolepsy, due to the lack of diversity in clinical trials. Jamie also shares how medication shortages are affecting her and others, and how dire the situation is in the US. Jamie is an advocate for more education about chronic illnesses, particularly in recognizing symptoms in children, and she highlights her work in increasing the understanding of autoimmune diseases.

The song that Jamie chose is Fight Song by Rachel Platten.

John lives with inclusion body myositis (IBM), a rare muscle-wasting disease. He shares how his symptoms, such as difficulty climbing stairs and playing guitar, were initially mistaken for aging, and later led to a misdiagnosis of ALS. He describes the emotional impact of living with a rare disease, the challenges of receiving an accurate diagnosis, and the frustration of the limited treatment options available for IBM. Despite these challenges, John remains committed to raising awareness and advocating for research to improve the lives of those affected by IBM and other rare diseases.

The song that John selected is Into the mystic by Van Morrison.