In this episode of 'Rare Candor,' we shed light on the stark reality that 95% of rare diseases are without treatment. Enter Fasenra (benralizumab)—the newest treatment for those navigating eosinophilic granulomatosis with polyangiitis (EGPA). Sarah, alongside Dr. Jessica Most, dives deep into Fasenra's unique mechanism of unleashing natural killer cells to tackle eosinophils. They discuss the importance of treating patients with respect, arming them with all the facts and data they crave. The duo also navigates through safety concerns, dosing intricacies, and the uphill battle with insurance companies. Pam ends the episode by sharing tips to help your doctor, and insurance, wrap their heads around the unique dosing for EGPA. Bold, unapologetic, and utterly essential for anyone in the rare disease community.

This episode dives deep into the critical topic of second opinions for those battling rare diseases. Emphasizing the often-overlooked value of getting a second—or even third—medical opinion, it compares the practice to seeking multiple quotes for major home repairs. Through a candid conversation with Dr. Samantha Shapiro, a rheumatologist from Johns Hopkins now in private practice doing second opinions, the episode highlights the necessity of expert insights, especially when dealing with complex, rare conditions. The importance of feeling heard, validated, and understood by healthcare providers is stressed, alongside practical tips for securing second opinions, like using platforms such as Second MD and leveraging crowdfunding sources like GoFundMe for financial support. Ultimately, the message is clear: patients deserve comprehensive care and should never settle for mediocre medical advice.

This episode dives into the often overlooked topic of intimacy for people living with rare diseases, chronic conditions, and chronic pain. As the hosts highlight, the surge of issues such as weight gain from medications like prednisone, premature menopause from cyclophosphamide, and caregiver role reversals can all affect one's self-image and intimate life. Featuring guest expert Jessica Szymas, a licensed mental health counselor and certified sex therapist, the discussion covers the importance of understanding stress, managing trauma, and exploring the Wheel of Consent. The conversation offers practical advice, such as recognizing desires, negotiating boundaries, and utilizing techniques like the Three Minute Game to reconnect with your partner. Emphasizing the fierce urgency of reclaiming humanity and connection amidst medical struggles, this episode serves as a raw, candid guide for those who refuse to let their conditions dim their intimate lives.