EmilyThis 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.”

That same attitude led me to an online CF community in my mid-20s that had been, unbeknownst to me, thriving below the surface for years. It was a community of people with CF who wanted to grab the reigns of their own health and care—just like me. They swapped stories and shared treatment ideas. They learned from their successes and failures. They understood and supported each other. Mostly, they asked lots of questions. This clique equipped me with tools and empowerment to become an active, engaged, and respected partner in my health care and research.

Patient partnerships go two ways though. Fortunately, I found an adult CF clinic that nurtures my desire to partner in care, respects my need for an enriching life that doesn’t exclusively center around CF and embraces my never-ending questions.

The online CF community also opened my eyes to the need for fundraising. In December 2011, my family, friends and I formed Emily’s Entourage, a nonprofit organization that raises funds to help cure CF. Rather than stand by as I got sicker, we could accelerate research and grasp on to hope through fundraising. Affecting only 30,000 people nationwide, CF is an orphan disease, meaning drug development is an unattractive business venture for pharmaceutical companies. Therefore, funding for new CF treatments relies on individual donors. Money funds research and research holds the only hope of saving my life and my CF compatriots. Emily’s Entourage has raised nearly half a million dollars. We have worked with the national CF Foundation to expedite research on my mutation and the bacteria infecting my lungs, both of which are “uncommon.”

Beyond the personal empowerment I’ve gained and the platform that Emily’s Entourage has provided, I’ve had the chance to start making an impact at a bigger level. This year, my siblings and I gave a TEDx talk on youth activism and I shared my story with over 500 people at a CF Foundation gala. I’m also serving as the only person with CF on a communications team as part of the CF Foundation’s five-year strategic planning. These opportunities allow me to channel my hate for CF towards putting an end to a disease that has wreaked havoc on my life and my family, and that has torn too many beautiful people from this earth too soon.

CF may be the binding on my hands, but these opportunities are the muscle-builders for my legs. The truth remains that I wouldn’t have chosen to join a clique where a faulty gene is the membership ticket, average lifespan is in the mid-30s and everyday life consists of lung infections, digestive problems, hospitalizations, hours of daily treatments, and scores of pills. I wouldn’t have picked it, but I don’t get that choice. My choice is how to deal with it and I choose to be a partner in my care, I choose to be a partner in my research, and I choose to be a proud member of the ever-inspiring CF community.

5 Tips For How You Can Become An Empowered Patient, Too

  1. Demand to be a partner in your care. Nobody has more stake in your health care than you. Equip yourself with knowledge to be your own best advocate and find a health care team that values your partnership in care.
  2. Always ask questions. Don’t let anyone quiet your hunger for information or answers.
  3. Seek out a community that understands. Connecting with people who are going through similar experiences empowers you with a wealth of information and support.
  4. Channel negative emotions into productive outlets. Don’t waste time or energy on things you can’t change. Focus on and pursue the things you can do.
  5. Find beauty on unexpected paths. Illness causes unplanned twists and turns. Feel the pain, then shift gears and move forward. Unexpected paths can end up being the most beautiful.

Emily’s Entourage is a 501(c)(3) organization that raises awareness and funds to help find a cure for Cystic Fibrosis (CF). Nearly 70,000 people worldwide with CF are waiting with bated breath for life-saving breakthroughs. We’re mobilizing friends, families and communities to join Emily’s Entourage on our quest for new treatments and a cure. To learn more about Emily’s Entourage visit www.EmilysEntourage.org or find us on Facebook or Twitter