On WHYY’s Morning Edition, we continue to check in with individuals in our area to ask them how they’re getting through the coronavirus pandemic.
Host Jennifer Lynn spoke with Emily Kramer-Golinkoff. She’s a co-founder of Emily’s Entourage – a nonprofit advocating for accelerated research into new treatments and a cure for debilitating illnesses like cystic fibrosis, which she has.
Kramer-Golinkoff is an internationally recognized patient-advocate who lives in Ardmore. She was diagnosed with C.F. as a newborn.
Jennifer asked Emily if she ever imagined life without the disease that affects her lungs and digestive system.
No. There’s no point in my life that I remember not having C.F. Being diagnosed at six weeks old, it’s really the only reality that I’ve ever known. It’s so embedded in my events of life and self that I think it’s sort of impossible for me to separate.
Give us a sense of your routine, what you have to do for self-care.
Sure. So, you know, one of the really unique aspects of cystic fibrosis is that not only is it a progressive and fatal disease, but also carries with it a tremendous treatment burden that is almost unlike any other disease of its kind. So every single day I spend about four to five hours on different treatments. You know, I inhale tons of different medications. I do a therapy vest that shakes me to help dislodge the mucus that builds up in my lungs and that’s at my baseline when I’m healthiest. And so as a result of that, I have chosen to take really extreme precautions and try at all costs to avoid any exposure to COVID. So I’ve now been in strict lockdown for about three weeks.
Emily, what does that strict lockdown look like?
I am staying with family and we stay in the house. You know, we take one walk a day where we dodge people and we’ve developed a staging area outside. We leave packages out for a number of days and then we disinfect them with soap and water, then with Clorox, then with soap and water again. And we’re also not seeing any other people. And I really committed to staying COVID-free.
Something else I’ve learned, we spoke a little bit before this interview, is you said you can’t actually be physically with someone else who has C.F.
Yeah, that’s true. People with C.F. cannot be together. We have dangerous bacteria that lives in our lungs and it’s only transmissible to other people with C.F. So it poses no risk to healthy people and to anyone else in the community. So as a result, we can’t ever be with the only other people in the world who are living with the same disease as we are.
But you and others within the C.F. community are pros at connecting virtually on your computers, on your phones. It’s what you do.
A lot of my close friends with C.F. are people I’ve never met and never will meet. And yet, you know, I know some of the most intimate details of their lives, but I don’t know some of the simplest ones.
Emily, your foundation advocates for C.F. education, research and drug development. But much of that is halted, so experts can find a way to stop COVID-19. What are your thoughts on this?
I hope that the world is realizing the critical, lifesaving value of research and drug development, because at the end of the day, when our lives are all in peril, that’s the thing that saves us. People in the C.F. community and other rare disease communities have always known that, and hopefully the rest of the world is realizing that too.
Are you scared right now?
Yeah, petrified. My biggest fear is just needing care for C.F. and not being able to get it or not being willing to get it because the risks outweigh the benefits. For someone like me with really advanced stage disease, I don’t have a cushion. You can become paralyzed with fear and that’s not helpful either. I need my immune system to be strong. So, you know, I try to really focus on what I can control and not drown in persistent fear.
For more information about Emily Kramer-Golinkoff’s foundation, you can go to EmilysEntourage.org.