Avery's Journey To Breathe: How Avery Engelman is changing the way people discuss Cystic Fibrosis



(Image courtesy of Avery)




My blog is a place where people can find hidden gems. These gems usually are products or services in a variety of industries. Yet, as the holiday season rolls around, I want to be able to shine a light on people who make a difference in their community. Avery Engelman is one of those people. She bravely faces Cystic Fibrosis (CF) as she tries to live every day to the fullest. I will never forget how she kindly answered questions about CF to anyone who would ask. I wanted the people that read this blog to have the same experience as I did when learning about CF. So, I had the opportunity to catch up with Engelman and learn more about her journey to breathe.




1. What is CF?

Cystic Fibrosis is a genetic disorder that affects the the lungs, digestive system and other organs in the body. The body produces mucus 24/7 like I have a cold and clogs my lungs & passageways throughout the entire body.



(Image courtesy of National Heart Lung and Blood Institute (NIH). Image states the following, "Figure A shows the organs that cystic fibrosis can affect. Figure B shows a cross-section of a normal airway. Figure C shows an airway with cystic fibrosis. The widened airway is blocked by thick, sticky mucus that contains blood and bacteria." You can find this image at https://en.wikipedia.org/wiki/File:Cysticfibrosis01.jpg )


2. What is your CF journey?

My CF journey began at birth. I was diagnosed with Cystic Fibrosis the day I was born and have been fighting it for 23 years. I grew up as a normal child: attending school, going to sleep away camp, and playing sports. Things were challenging as I got older and sicker, but I continued to live my life as best as I could. By the time I hit high school, my lung function was significantly decreasing. I was homeschooled from 10th grade on and needed to take a break my senior year to fight for my life. At 16% lung function, I needed a double lung transplant to survive. My dad and I moved across the country to St. Louis MO in hopes of receiving this amazing gift. Coming up this February of 2022, it will be my 6 year lung transplant anniversary. I am extremely grateful and fortunate to have received this amazing gift. Since my transplant, I have had a few hick-ups, but nothing has slowed me down from living. I was diagnosed with Cystic Fibrosis Related Diabetes, Osteoporosis, Migraines, IBS, Anxiety and more.

(Image courtesy of Avery)





3. What are things people should know about people with CF?


Although I have a life threatening illness, I am just like you. I am an average girl that wants to live her life no different from you.







(Image courtesy of Avery)









A fun fact about CF is that people that have CF are not allowed to be within 6 feet of each other. The disease is very isolating because being close to each other makes one another sicker. P.S. check out the movie 5 feet apart!








(Video courtesy of CBS Films)


4. How has COVID-19 impacted your overall health?


COVID has drastically affected my life and health. Since the pandemic started, I have had to remain extra cautious to not get ill. This in turn has isolated me from the world that I desperately want to be apart of and brought my back to a period of PSTD when I was extremely ill. Luckily, I have not gotten COVID and stayed safe, but I would most likely have been one of the patients living in the hospital if I did. Most people had to adjust to washing their hands, wearing masks, staying distant… not me. This was my entire life before COVID. It’s more strange that the world can get a small glimpse into what my world is like without having my illness.



(Image courtesy of Avery)

5. What are ways people can give back to CF causes? You can volunteer, participate or donate to the Cystic Fibrosis Foundation at anytime! They have wonderful events like an annual 5k walk/run in every city.









Me on my first day of graduate school

Rachel Huss

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