We made it to 2020, and, wow, what a crazy beginning we have had! But there are still many things for which to be thankful. I am happy to say that 2019 was a GREAT year health-wise, and I cannot wait to see what the future holds. Towards the end of 2019, I was approved for the newest drug designed to treat the underlying symptoms of Cystic Fibrosis, Trikafta!! I was not sure what to expect because while the other drugs I was taking in the past did help, I was not showing a significant improvement like I had hoped and that researchers and doctors had described. Hey, it just was not the right fit for me. I am just thankful I never got worse! I just simply maintained the same lung function and weight for a while, and I was content with that.
Finally, on December 2, 2019, I was mailed my first 3 months of Trikafta! All I heard was amazing things so I was super anxious to start it and see how it would affect my body. I noticed a difference right away! I was breathing in a way I never thought I would! I was barely tired, staying up past 9 PM multiple nights in a row, and what I felt was indescribable. On February 20, 2020, I had my first Hopkins’ appointment since starting Trikafta, and boy, was I nervous to see the results! Would they match how I felt….AND THEY DID! My lung function increased by 15%, and I gained about 3 pounds!!! This truly is a miracle drug, and I am so thankful my CF mutation was approved for it.
These days I am going strong, working every day, social distancing with my friends/family when I can and giving my puppy lots of exercise because I feel so good! God is truly a Miracle Worker! At 25 years old, I cannot believe I am able to experience life like I never thought I would! The results are mind-blowing!
The threat of coronavirus has changed the way we do things in so many ways. So with that being said, the 2020 CF Great Strides walk in Annapolis is cancelled, but we are still trying to raise money for research. If you feel it in your heart to still give at this time, any amount is appreciated because while I feel amazing, we still need to find a cure for CF that includes all mutations! We are so close to having CF stand for Cure Found!
Thank you for your continued support of Jillian’s Jaywalkers for all these years! Stay safe, and I hope to see you soon!
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.