The UNO Public Relations Student Society of America (PRSSA) chapter held “Spill The Tea on Cystic Fibrosis” to educate and raise awareness for the hereditary disease that affects the lungs and digestive system. Guest speaker and Cystic Fibrosis (CF) fighter Lydia Sand shared her experience growing up with the disease.
Sand was diagnosed with CF at age 9. When her parents learned what the disease was, she knew her life would change forever.
“When I got that diagnosis, I did twice daily breathing treatments,” Sand said.
Sand uses the high-frequency chest wall oscillation vest, where the inflatable vest attached to a machine vibrates at a high frequency to help loosen and thin mucus. She also takes pancreatic enzymes to help digest fat and protein from the food she eats.
For Sand, growing up with CF was difficult but the support of her parents helped her focus on the positive aspects that come out of the life-changing experience.
“With that, I feel a new appreciation and I’m very grateful for the life I’ve been able to live,” Sand said.
Sand didn’t want CF to hold her back from enjoying her life growing up, but it was difficult to explain the illness to her friends.
“Sometimes I’m secretly taking enzymes at lunch or not wanting friends to ask me why I was coughing all the time,” Sand said “But then I learned that the more I shared and the more I gave awareness to this disease, everyone understood and started showing more compassion for all.”
When Sand attended UNO, she lived in a single dorm room for all four years of her college career. College was difficult for Sand because she had to find a way to deal with her illness while away from her parents in an out-of-state college.
“If you get infections, it can just take a long time to get over them—more than a normal person,” she said. “My parents and I felt that probably the best and safest way for me to go to college would be to have my own single dorm room.”
Sand traveled internationally to several different countries. She focused on being the best advocate for the CF Foundation and helped fundraise for the local chapter in Nebraska.
Sand started a sand volleyball tournament in August and participated in the Cystic Fibrosis Foundation’s annual Great Strides Walk, where Team Lydia raised $37,000 this year for CF.
Sand explained how the new, recently FDA approved drug Trikafta helps correct the defect in the CFTR protein, slowing down decreasing lung function that many CF fighters deal with.
Trikafta was approved by the Food and Drug Administration (FDA) on Oct. 21 of this year and is available for patients age 12 years and older who have at least one copy of the defect CFTR gene, meaning 90% of the Cystic Fibrosis community can take the drug, including Sand herself.
“Seeing my other friends, who have CF across the country, who are taking this have increased lung function, are feeling better, having more energy – just so many amazing things are happening,” Sand said.
Sand said the CF Foundation helped her connect with other patients nationally and internationally, developing a social network for support while finding new treatments to help expand life expectancy for many patients.
Sand said what colleges can do to help support students with Cystic Fibrosis is to provide appropriate living arrangements – like a single dorm room – and the ability to work closely with professors and faculty to prevent the illness from affecting their schoolwork.
“I think letting students feel like they are supported in that,” Sand said, “that it’s hard work having a chronic illness and it’s even harder doing normal things on top of that.”
Sand currently works at the University of Nebraska Medical Center as a Program Coordinator in the Nebraska Area Health Education Center, where medical schools and community health centers can help recruit and retain health care professionals to serve in rural areas.
To follow-up with Sand’s journey with Cystic Fibrosis, follow her Instagram account @inspireinthesandbox where she shares her daily experience.