How The POTS Project Began: A Mission Rooted in Support, Awareness, and Advocacy
Starting a nonprofit is a journey filled with both inspiration and challenges, and for me, creating The POTS Project was deeply personal. Living with postural orthostatic tachycardia syndrome (POTS) myself, I became all too familiar with the complexities of this condition, from the medical appointments to the daily battles with symptoms that affect every part of life. But I also saw a gap—many people felt isolated, misunderstood, and without the resources they needed. That's where the idea for The POTS Project began.
Understanding the Struggle
POTS, a form of dysautonomia, impacts the autonomic nervous system, affecting heart rate, blood flow, and overall stability. This means simple activities like standing up, walking, or even eating can trigger symptoms like dizziness, palpitations, and severe fatigue. And though POTS can be life-changing, it’s still widely misunderstood by the public and often misdiagnosed by healthcare providers.
Living with this condition, I saw firsthand how POTS affected not just my physical health but my emotional and mental well-being too. The feeling of invisibility, of knowing something is wrong but struggling to find a diagnosis, and the sense of isolation were difficult to bear. I knew I wasn’t alone in this struggle, and that’s what motivated me to create something that could offer support to others in the POTS community.
The Idea Behind The POTS Project
The idea for The POTS Project started small. Initially, I envisioned a space where people could come together, share their stories, and gain access to reliable information and resources about POTS. There’s a vast online community, but there was still a need for a dedicated place that focused on both practical support and awareness-raising.
In the beginning, my goal was simple: create a safe space for people with POTS to connect, share their journeys, and learn. But as I engaged more with the community, I realized there was potential to make a broader impact. We needed more than just support; we needed to educate the public, advocate for better medical understanding, and most importantly for me, provide resources that would make daily life more manageable for those affected by this condition.
Building the Foundation
Establishing The POTS Project as a nonprofit was a challenge, but it was also empowering. I spent countless hours researching, gathering resources, and connecting with others in the POTS community. Through online forums, social media, and local support groups, I found people who were not only eager to share their experiences but also passionate about making a difference.
One of the most rewarding parts of this process was the support I received from individuals who shared similar stories and dreams. Their encouragement strengthened my resolve to take The POTS Project from an idea to reality. I knew that together, we could foster understanding and support for POTS in ways that were deeply needed.
Looking Ahead
The journey of The POTS Project is far from over. We’re committed to reaching more people, creating new programs, and pushing for change in the approach to POTS. Every donation, every story shared, and every new connection made brings us closer to a future where no one has to face this condition alone.
Thank you for being a part of this journey with us. Together, we’re not just raising awareness about POTS; we’re creating a community of support, resilience, and hope.
Whether you’re newly diagnosed or have been managing POTS for years, The POTS Project is here for you. We’re in this together, every step of the way.