-
サマリー
あらすじ・解説
🎙️ Host: Erin Hubbard
🎤 Guest: Sarah Forsman
📅 Release Date: 2/28/2025
🔬 Topic: Life with Alpha-Mannosidosis and the Impact of Early Treatment
Episode Overview
In this episode of These Kids Can’t Wait, host Erin Hubbard speaks with Sarah Forsman, a patient living with Alpha-Mannosidosis. Sarah shares her personal journey, including undergoing a bone marrow transplant at the age of four, and how this early intervention has shaped her life.
From navigating the challenges of a rare disease to advocating for greater awareness, Sarah offers a unique and inspiring perspective on what it means to live with Alpha-Mannosidosis. This conversation sheds light on the realities of managing a lysosomal storage disorder, the importance of early diagnosis and treatment, and the resilience of the rare disease community.
Key Takeaways
✔️ Sarah’s experience with Alpha-Mannosidosis and her early treatment journey
✔️ The impact of a bone marrow transplant on disease progression
✔️ Challenges and triumphs of living with a rare disease
✔️ The importance of research, advocacy, and patient support networks
Resources & Links
🌐 Learn more about The Lost Enzyme Project: https://thelostenzymeproject.org/ 📢 Follow us on social media: https://www.linkedin.com/feed/
https://www.instagram.com/thelostenzymeproject/
https://www.facebook.com/people/The-Lost-Enzyme-Project/61551541563692/
📩 Contact us: Email us at admin@thelostenzymeproject.org to get in contact with our producer at alex@thelostenzymeproject.org
Sarah’s Blog: https://achievetheimpossibletoday.com/blog/
ISMRD: https://www.ismrd.org/
Subscribe & Stay Connected
Stay informed by subscribing to These Kids Can’t Wait on Spotify, Apple Podcasts, Youtube or Amazon music. If you find this episode valuable, please leave a review to help raise awareness for rare disease research.