This is a guest blog from Emily Kramer-Golinkoff. I was lucky enough to meet her about a year ago & even luckier that she asked me to help her make a big impact with her final thesis for her Masters in Bioethics. Her story, insight, and strength are worth your time. She’s hoping to leave a big mark in understanding how to leverage the asset of empowered patients to advance science and healing. She’s working to integrate patient communities more intimately in the health system. Her post is about why she chose to be an empowered patient and it’s fairly clear why she’s attracted an entourage…
Truth be told, belonging to a disease community isn’t my clique of choice. An artist community, a running club, even a yogi enclave sound more appealing. But I’ve learned that when our hands are tied, we’re better off building muscles in our legs than spending all our energy trying to wrangle our hands free.
That’s the philosophy I’ve embraced as a 28-year-old with big eyes, a bright future, and an advanced, incurable and fatal disease called Cystic Fibrosis. Cystic Fibrosis (CF) is a progressive genetic disease that primarily affects the lungs and digestive system. It causes thick mucus to build up in the lungs, leading to life-threatening infections.
My winding path to patient empowerment started as a headstrong, sassy little girl who clashed with my pediatric CF clinic’s authoritative culture. My perpetual questions of “why?” and efforts to integrate my disease into my life were met with disdain and labeled “difficult.”