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About Emily's Entourage

Emily's Entourage: No One Should Be Left Behind

THE 2020 VIDEO IS FINALLY HERE!!!!!At EE, we are building a foundation of the future that changes the way and the pace at which drug development is done.We envision a future where nobody with CF is left behind, and we are committed to creating that future for everyone in the final 10% in meteoric speed.Getting there in time and finishing the job for the final 10%—that is up to you.VIEW!DONATE! >> emilysentourage.org/donateSHARE!LET’S DO THIS!!!!!Production Company: Storied StudiosDirected and Produced by: Joanna RudnickAnimation and editing by: Adam Kennedy, Resolution WorkshopArt direction and illustration by: Andrea AmandaContributing Producer: Lindsey Rosin PassmanMusic courtesy of: Score a Score#EEinBloom #HopeLiesAhead #HopeBloomsHere #cureCF #beatCF #CFAwareness #cysicfibrosis #EmilysEntourage #brEEthe #nobodyleftbehind #nooneshouldbeleftbehind #raredisease #orphandisease #careaboutrare

Emily's Entourage 发布于 2019年12月9日周一

Tips from a life of avoiding infection

A local cystic fibrosis patient and advocate has spent her whole life avoiding viruses. In the time of coronavirus, we could all benefit from her experience

A local cystic fibrosis patient and advocate has spent her whole life avoiding viruses. In the time of coronavirus, we could all benefit from her experience

With the coronavirus pandemic unfolding before our eyes, it is hard not to feel overcome with panic, fear, and helplessness. These are scary and surreal times for the whole world, and that fear is only heightened for vulnerable populations who are particularly at risk for bad outcomes from this novel coronavirus (COVID-19).

I have lived with a rare form of a rare lung disease, cystic fibrosis, for my whole life. While nothing we have ever faced as a world in our lifetime compares to this, I cannot help but be struck by some of the parallels between life with CF and COVID-19.

Currently, the world is living with heightened germ awareness and taking infection control precautions that the CF community lives with and follows every day as a result of our chronic, fatal genetic disease. People are avoiding handshakes and crowds, maintaining a 6-foot distance from other people, and feeling fearful at the mere sound of a sniffle or cough.

Do SomethingSounds eerily familiar to everyday life with CF. After all, a simple cold or worse, the flu, has always been potentially catastrophic for the CF community.

Let me be clear, I am not here to complain or conjure empathy. Quite the contrary. I am here because a lifetime with CF has given me a repertoire of tools and tricks for staying safe from germs, but also staying sane during social distancing that I think might be helpful for you too.

Who would have thought CF would pay off in this way?

But first, a few important disclaimers:

  • I am neither a doctor nor a public health official. These are just the precautions I have chosen to follow. If you have a health condition, check with your medical team to come up with the best plan for your circumstance.
  • People with CF represent an especially at risk population, so the precautions I am following are admittedly extreme and not necessarily generalizable to a healthy population. The stakes are high for me, and I am choosing to go to great lengths to minimize my risk. These are my personal choices.
  • I recognize the enormous privilege I have in being able to self quarantine, have access to food and medications, and continue so many parts of my daily life virtually. I realize that is a privilege not shared by many.

And so, without further adieu, here is my plan for staying safe and sane during these crazy, scary coronavirus times:

STAY SAFE

  1. Self isolate. I am voluntarily self quarantining. My family is too. For us, that means not leaving the house aside from going outside for walks. I am minimizing my exposure to people who are not self quarantining as much as possible.
  2. Wash your hands, rigorously (20 seconds or more) and often. When I do not have access to soap and water, I am using hand sanitizer, also liberally and often.
  3. Do not touch your face. This one is hard for me!
  4. Create a ‘staging’ station for clean entry into your house. We created a staging Videostation at the front door equipped with hand sanitizer and alcohol swabs. We are having everyone sanitize their hands and phones when they enter and take their coats and shoes off. We are also sanitizing all packages that are delivered.
  5. Clean your phones. I am sanitizing my phone multiple times throughout the day with 70 percent isopropyl alcohol. Phones are a germ cesspool but they are also very easy to disinfect.
  6. Clean commonly touched surfaces. We are regularly cleaning door handles, sink faucets and handles, and other surfaces and areas that get touched often and by many (i.e. light switches).
  7. Change all non-urgent appointments. For all non-urgent doctors appointments, I either canceled them or switched them to virtual appointments, when possible.
  8. Stock up on essentials (without hoarding). In preparation for a prolonged stay at home, I stocked up on food and checked all my medication and medical supplies to make sure I had enough for a few weeks. Just to be clear, I am not hoarding nor am I advocating hoarding. I am merely ensuring I have the essentials I need during a quarantine.

STAY SANE

  1. Stay busy… virtually. Thank goodness for digital technology that enables virtual collaboration, discussions and meetings, and work. It is easy to get swept up in the panic of the news cycle. Staying busy keeps me focused, productive, and in a better head space.
  2. Get physical activity. Anyone who knows me knows I am very attached to my Fitbit and religious about my 10K daily steps goal. Despite the quarantine, I am not wavering in my fitness goals! The outdoors is coronavirus-free (for the most part)! I am taking multiple long walks a day to get exercise and work my lungs, and also to clear my head. Moving is good. Moving outdoors is even better. Nature heals!
  3. Establish structure and a schedule for the quarantine life. Routine is helpful. I am trying to frame this as a temporary new normal and lean into the alternative WFH life rather than begrudge it. This includes good sleep hygiene. This is also a hard one for me. Working on it! (Turns out not even a coronavirus pandemic cures a forever night owl of her late night tendencies.)
  4. Practice self care. People often talk about baths, yoga, or even skin care. Everyone should do what works for them, but self care can also take the form of knowing yourself, knowing what elicits panic and anxiety, and deliberately choosing to avoid those triggers (guilt-free). For me, that means limiting my exposure to news about COVID-19. I am deliberately limiting what I read and watch. I am taking significant precautions as it is. Knowing whether there are 35 or 55 confirmed cases in PA does not change my approach. I promise, you hear the important updates anyway!
  5. Maintain social connections with friends, family and coworkers—but in alternative ways. In these times of quarantining and social distancing, connection is paramount. You just have to get creative! The CF community has lots of experience with this. Since people with CF carry bacteria in their lungs that are only transmissible to others with CF (not otherwise healthy people), people with CF cannot safely be near each other. So, the CF community has become accustomed to virtual conferences, happy hours, and hangouts. Last night, I did a Zoom conference with a group of my CF friends. We joked around. We laughed. Those moments of connection are cathartic and grounding. They bring familiarity, levity, and comfort at a time when things feel scary and uncertain and we need it most.
    Hanging out with CF friends. Courtesy of Emily’s Entourage
  6. Create boundaries. When working from home, one of the most challenging parts is separating “home” from “work” when it is all happening in the same confined space. Decide on your schedule and stick to it. When you are not working, disconnect and do things that allow you to decompress. It is a perfect time to catch up on TV shows, or if you are more like me, binge on awesome podcasts! Lately, I have been into Rebecca Minkoff’s “Super Women.” I love a good podcast series on entrepreneurs and women. If you have any “recs,” please send them my way as I am quickly running out!
  7. Finally, find gratitude. There is a lot to be scared about these days. But instead of drowning in fear and feelings of deprivation, I am choosing to flip the fear into opportunity. I am focusing on changing up my routines (as a total type A resistant to change, this is refreshing and good!), feeling gratitude for the abundance of things I have, learning some fun new skills (making a killer latte!), and creating good new habits. This tactic of transforming adversity into advantage has been a winning coping mechanism through every challenge I have faced up until now and it has never let me down. I encourage you to try it too!

Everyone’s plan for tackling COVID-19 will look a little different, and that is okay. As you develop your plan, I urge you seek advice from trustworthy sources, do what feels right to you, and consider not only yourself but our collective community.

Read MoreFlattening the curve, the act of taking preventive measures like social distancing early to reduce and delay the spike in the rate of infection and the burden on the health care system, is critical for saving lives—and it is up to us. Social distancing and smart, precautious behavior is the only way we will get there.

Remember, everything is temporary, and this too shall pass. In the meantime, I encourage you to take control of what you can, and then, hard as it is, surrender that which you cannot. I promise that focusing your energy on productive outlets, on the things you can do, and the many things you have to be grateful for will get you a lot farther and leave you feeling a whole lot better. At least for me it always has.

Emily Kramer-Golinkoff is founder of Emily’s Entourage, which helps to accelerate research into nonsense mutations of cystic fibrosis. She is an internationally recognized patient advocate and speaker who was named a White House Precision Medicine “Champion of Change.”

Header: Courtesy Emily's Entourage

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