Patient & Physician Narratives

Explore compelling narratives of resilience and triumph over rare medical conditions, where individuals confront the complexities of their health with courage, hope, and the pursuit of effective treatments.
Patient Video – Living with hATTR Amyloidosis

Meet Diane, a resilient individual living by the mantra “Where there’s a will, there’s a way.” Diane’s life took an unexpected turn when her family faced the challenges of Hereditary ATTR Amyloidosis, also known as TTR Amyloidosis. This rare inherited condition can impact various body systems, posing a significant burden on patients and their families. Diane shares her journey with TTR Amyloidosis, explaining the impact on her energetic lifestyle and how she discovered hope through treatment. Diane underwent Onpattro, a medication designed for Polyneuropathy TTR Amyloidosis in adults, which involved regular IV infusions. Despite experiencing some infusion-related reactions, such as nausea and cramping, Diane noticed positive changes. With Onpattro, she found relief from fatigue, reduced burning and tingling sensations, and regained the ability to carry out daily activities. Now, as a massage therapist and horse enthusiast, Diane continues to celebrate life and inspire others with her unwavering spirit – proving that with determination, one can overcome even the most challenging circumstances. Learn more about Onpattro and Diane’s journey, understanding that every day is worth fighting for.

Physician Video – Impact of Alopecia Areata

Step into the poignant world of individuals grappling with alopecia areata, as revealed by a compassionate clinician who has treated over 200 patients in the last five years. Alopecia areata, an autoimmune disease, extends beyond mere hair loss, delving deep into the realms of identity. This condition, marked by the body’s assault on its hair follicles and sometimes nails, goes beyond physical symptoms, causing psychological distress and a profound sense of loss. The unpredictability of appearance and the longing for a return to normalcy characterize the daily struggle. Even in those without overt anxiety or depression, the emotional impact is profound, with some patients experiencing such distress that they contemplate drastic measures. The clinician emphasizes the importance of education and understanding, aiming to guide patients through the relentless cycle of uncertainty. With evolving insights into the causes of alopecia areata, there’s a hopeful outlook for the future, aspiring to transition from mere acceptance to reliably effective therapies, offering a lifeline to those navigating the complex landscape of this autoimmune challenge.

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