When I initially wrote this series, I named it ‘Empowered Patients’. However, I quickly realised that the title wasn’t adequate or descriptive enough for the people I wanted to feature. I think you will agree that these women are nothing short of superheroes. That couldn’t be more true about today’s interviewee who isn’t just her own superhero but a superhero for the entire CF community. Emily Kramer-Golinkoff is a passionate advocate for the cystic fibrosis community and founder of Emily’s Entourage, an organisation which has raised nearly 2 million dollars to help find a cure for cystic fibrosis with a focus on rare mutations. In July, 2015, the White House named Emily a Champion of Change for Precision Medicine. Emily’s story has been featured on People.com, Time.com, CBS’s nationally syndicated television program The Doctor’s, The Philadelphia Inquirer amongst others. Emily’s mission to live a life bigger than her own honestly gives me goosebumps and it is people like her that make me grateful to be part of the CF community.
Emily, tell us a bit about what having CF has meant for you?
Always a hard question to answer because I don’t know much about life without CF. But in general, I think that living with a fatal disease crystallized my priorities in life at a very young age. It has made me laser focused, tenacious and hard working. I won’t stop at anything for the things I want – sometimes to a fault. I’ve learned to be creative and agile and to channel my energy into productive outlets.
The uncertainty of life with CF has taught me to not wait. You never know what the next day will bring, so I try my hardest to seize opportunities when they present and make the most of them. That’s true for everyone, but it’s especially true for those of us living with CF.
What does your daily CF superhero routine look like and how do you make sure you stick to it?
Each day, I do about 3-4 hours of breathing treatments and airway clearance, take about 30 pills, and do 4 insulin injections — and that’s when I’m healthy. It’s been well over a decade since I’ve missed a treatment. I feel better when I do my treatments and they slow the progression of CF and minimize its intrusion on my life, which means more quality time doing the things I love and making the changes I want to see in the world.
Beyond your treatments and medications what other things do you believe are important to staying well and being a CF Superhero?
Managing CF is tough. There’s no way around that. The things that keep me motivated and engaged and empower me to rise above the adversity are community, purpose, and agency.
My family and friends are the reason I work so hard to stay healthy and it’s because of them that I can continue to live such a rich and full life despite the advanced stage of my disease. My community extends beyond that innermost circle though too. I am extremely fortunate to be part of vibrant, invaluable online CF communities that provide me with information, guidance, compassion, support and camaraderie. They are a lifeline.
Emily’s Entourage, the nonprofit foundation that I started, as well as patient advocacy provide purpose and agency. We’ve raised nearly $2 million to fast track research for new treatments and a cure for rare nonsense mutations of Cystic Fibrosis (like mine). We’re also working hard to define a new role for patients, families and foundations in the biomedical ecosystem where rather than be the passive beneficiaries of biomedical progress, we’re active partners in driving it. The mission of Emily’s Entourage is my life’s work.
If you were stranded on a desert island which five treatments would you want to have with you?
3. Hypertonic saline
What is the hardest thing about being a CF superhero and what strategies do you have for dealing with it?
The hardest part of my role as founder of Emily’s Entourage and patient advocate is balancing my time and energy along with managing my health. I have big eyes and a burning desire to do so many things in the world and the thing holding me back is my disease. I work very hard — and it’s a constant battle — to not overextend myself and, mostly, to get enough sleep. I try to remember that it’s a long game and I need to sustain myself so I can stay in it for the long haul.
To make the most of the time and energy that I have, I stay super organized and I’m all about efficiency.
What is your favourite empowered patient quote?
“Don’t bemoan that which you can’t change. Channel your energy into the things you can. You feel better and get further.”