Finding A Supportive POI Community Amidst Life’s Storms
Dear Friends,
Five years ago, my wife and I took a trip to Glasgow to attend a medical conference on rare disorders. Representing the Mary Elizabeth Conover Foundation, this unique opportunity allowed us to actively contribute to advocacy efforts for women with POI. Discovering a supportive POI community in Scotland was a journey of shared experiences and reflections.
One evening, we encountered a profoundly moving moment during a walk in Glasgow’s rainy and chilly weather. While navigating the streets in search of a traditional Scottish restaurant, we unintentionally knocked over the tin can of an elderly homeless man. This encounter prompted us to reflect on the shared challenges faced by individuals dealing with rare disorders, regardless of their background. Reminiscent of the poignant lyrics of “A Rainy Night in Georgia,” we couldn’t help but feel that the symbolic rain extends to all corners of the globe for those facing unique health challenges.
The song’s evocative imagery captures the feeling of being enveloped by rain, with neon signs flashing and a lingering longing permeating the night. The narrative resonates with the resilience and emotional strength of individuals navigating life’s challenges, much like those with rare disorders.
As we engage in meaningful conversations and collaborations at medical conferences, such as the one in Glasgow, we remain steadfast in our commitment to amplifying the voices of women with POI and advocating for improved care and support globally. Together, our goal is to build a worldwide network of understanding and empowerment that transcends geographical boundaries. Much like the sentiment expressed in “A Rainy Night in Georgia,” this network reflects the importance of finding solace and connection amidst life’s storms and drawing strength from one another.
Take Action
Women with POI can take specific actions to improve their healthcare encounters:
- Actively educate yourself about POI and its management. It helps to become informed about treatment options, potential side effects, and the latest research in the field.
- Seek out healthcare providers with experience and knowledge about POI, and those willing to engage in collaborative discussions about care.
- Build a solid support network. This can include connecting with other women with POI through support groups or online forums. A supportive POI community is our brightest path forward.
- Effectively communicating needs and concerns during healthcare appointments can lead to more personalized and effective care.
We eagerly anticipate continuing our journey with all of you as we support and uplift one another toward greater awareness and advocacy for women with POI. We remain optimistic about the progress we can achieve together and the hope we can bring to those facing rare disorders.
Take care and be well,
Dr. Lawrence M. Nelson, MD, MBA
Director, My 28 Days® Initiative
President, Mary Elizabeth Conover Foundation, Inc.
