The Young Women Grappling With an ‘Old Man’s Disease’
In 2021, Leah Stavenhagen, now 32, embarked on a poignant journey by founding Her A.L.S. Story, a platform dedicated to supporting young women diagnosed with Amyotrophic Lateral Sclerosis (A.L.S.). Leah’s own diagnosis, which came two years prior, prompted her to seek connections with others facing similar challenges. A.L.S. is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, leading to a gradual loss of muscle control. Leah’s initiative aims to create a community where young women can share their experiences, provide support, and raise awareness about the disease, which is often overlooked in discussions about health.
Living with A.L.S. has presented Leah with significant challenges, including the reliance on a BiPAP machine to assist her breathing. This respiratory support is critical for many A.L.S. patients as the disease progresses, affecting the muscles responsible for breathing. Through Her A.L.S. Story, Leah not only shares her personal journey but also highlights the unique struggles young women face, such as balancing family life, career aspirations, and social interactions while managing a debilitating illness. Her platform has become a beacon of hope and empowerment, fostering a sense of solidarity among women who often feel isolated by their diagnosis. Leah’s story is a testament to resilience and the power of community in navigating the complexities of living with A.L.S.
Leah Stavenhagen, now 32, started Her A.L.S. Story in 2021, two years after she herself was diagnosed with A.L.S., because she wanted to connect with other young women with the disease. A BiPAP machine helps her breathe.
