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Lydia's Story

Lydia’s cystic fibrosis (CF) journey is somewhat unique, as she wasn’t diagnosed until age 9, as a result of several misdiagnoses and the lack of genetic testing at birth. Though now, CF testing is now mandated at birth in all 50 states, meaning it is caught much earlier.

When it comes to CF, Lydia said there is so much work that goes on “behind the scenes,” as the disease impacts the respiratory and digestive systems with thick, sticky mucus. Dealing with her CF requires constant care and time to be healthy, much of which goes unnoticed. “While so many with CF ‘look healthy,’ I think sometimes the severity and the work CF requires is downplayed,” Lydia said. “Staying healthy is a constant battle.”

Lydia describes her daily routine to stay healthy, which consists of twice-a-day vest treatments to clear the mucus from her lungs, multiple nebulized medications and around 20-25 pills a day. “For me, CF has brought so many negative moments and frustrations; however, it has also created resiliency, perspective and gratefulness for life. I truly appreciate life from a different viewpoint than others who do not know what it means to live with a chronic illness.”

Originally from South Dakota, Lydia and her family became heavily involved in Great Strides, the fundraising walk of CFF, after her diagnosis. “I created Team Lydia and raised funds with a letter writing campaign. The first year, Team Lydia and I raised $10,000 and actually doubled the size of the Sioux Falls, SD, Great Strides walk, as I had more than 200 people on my team! Throughout the years, my family and I continued to fundraise and walk as well as serve on planning committees and participate in other CF fundraisers.”

Even after transitioning to college, Lydia continued to participate in Great Strides back home in Sioux Falls and also became involved in events within Minneapolis. Recently, her family was presented with the CFF Spirit of Generosity Award from the South Dakota/Minnesota Chapter, recognizing their support over the years.

She moved to Omaha in 2013 to pursue her graduate degree at UNO and has stayed since. Currently she works as the program coordinator for the Nebraska Area Health Education Center program at the University Nebraska Medical Center, and she is starting to become more involved with Cystic Fibrosis Foundation – Nebraska Chapter.  “I was hesitant to become involved in the Nebraska chapter at first, as it was not a CF community I grew up with.” But she has slowly become involved in the community, and in 2017, she established Team Lydia-Nebraska edition.

Lydia said that she has truly enjoyed becoming involved with CFF across these chapters. “CFF has helped my family have a positive outlet for our involvement. When you have a late diagnosis of CF, you understand what life before CF truly means,” she said. “CFF gave my family a way to continue and try to make a difference in a disease where much is out of your control. We gained a community of friends in South Dakota/Minnesota, and I can only hope that I will soon gain that here in Nebraska.”

But having support within the CF community is challenging, she noted. “Many people don't realize there is a high risk for cross-contamination of germs amongst individuals with CF. As a result, direct contact with others with CF is nonexistent or quite limited,” she said. “The CF Foundation has made amazing leaps forward with online and virtual support for individuals with CF, such as BreatheCon, a virtual conference for adults with CF as well as various other resources. CF is an invisible illness, as to many I appear healthy, so having a community of support who truly understands the implications of CF is needed.”

Additionally, CFF supports the majority of the research and treatment advancements for cystic fibrosis. “There have been tremendous drug advances within my lifetime alone, specifically in the last several years,” she said. “CF affects roughly 30,000 in the United States, a number so small that CF is actually qualified as a rare disease. There is no cure for CF and the average life expectancy is around 40 years old.”

Lydia shares her story and advocates on her Instagram, @Inspireinthesandbox. She also loves traveling, trying new recipes when cooking and hanging out with friends.