Another change that happened in 2019 was that I began to use my voice as an advocate for women with PCOS. PCOS, also known as polycystic ovary syndrome, is a complex endocrine and metabolic disorder that I and many other women I know live with. It is common (affecting 10% or more of women and girls), misunderstood, and critically underfunded, and can lead to life-threatening complications such as heart disease, type 2 diabetes, and endometrial cancer. It also comes with a higher rate of depression, anxiety, and eating disorders. And despite all of this, there is no approved medical treatment for PCOS.
In March of 2019, I joined a group of doctors, researchers, nutritionists, and patient advocates on Capitol Hill in Washington, DC. We attended meetings with our representatives and senators and asked them to co-sponsor legislation that funds PCOS research and recognizes PCOS as a public health priority.
In July of 2019, I co-chaired a 5K event in Philadelphia to raise funds for PCOS research, awareness, and education programs. Our event raised over $10,000.
In September of 2019, I traveled to Orlando, Florida to attend a PCOS symposium and to participate in and assist with another 5K event.
As an introvert who would rather do just about anything than talk to strangers, all of these things were WAY outside my comfort zone and frankly, more than a little terrifying. But the experience of advocating for myself and other with PCOS was life-changing. To be able to walk into a room, identify myself as a nurse and patient advocate, and talk to congressional staffers about my experience with PCOS, and have them agree to sign on to the legislation — it felt incredible, and deeply meaningful. Like I was actually changing the world for people like me.