“It takes a village” are the words I carry with me when asked what it is like to have a loved one with cystic fibrosis. For those living with CF and those who care for someone with CF, we know that this journey takes a community of love and support to get through the ups, downs, and everything in-betweens. While all our stories and experiences are different, some of the deepest connections I have made in this community have been through common advocacy efforts for the needs of our CF champions. I have learned as a CF sibling that our stories are powerful agents of change and are even stronger when we come together to use our voices.
My brother was diagnosed with CF at 4 months old after rapidly losing weight and experiencing progressive respiratory issues after he was born. I remember my parents going back and forth from home and to the hospital with my baby brother as they tried to figure out what life for their son with cystic fibrosis would look like and what they could do to help him live his best life. I have fond memories of sitting in the living room with James and our younger sibling every morning before school as James did his breathing treatments and laughed to the robotic hum of his vest. He never let these treatments slow him down and he still doesn’t as he just celebrated his 19th birthday (we are so grateful to celebrate another year!)
In James’s 19 years of battling cystic fibrosis, he has been hospitalized more than 40 times for two-week stays at a time to tune up his lungs. We’ve spent Easters in the hospital pavilion searching for eggs as James ran around with his portable IV pole dragging not too far behind him. Our family has celebrated Thanksgivings together, all crammed into James’s hospital room to share food and great memories from the year. We’ve also missed being able to visit James during flu seasons when hospital visitors were not allowed due to higher risks of infection.
One of the main reasons for his many hospitalizations is the result of lung infections that our family was unable able to manage at home with prescribed antibiotics. Whenever James was admitted to the hospital, he was put on IVs for the two-week stays and they pumped him with multiple doses of antibiotics to try and maintain his lung health -- some of which he is allergic to, but there was no better option.
While there is certainly promising medicine out there for CF patients, there is still a lot of improvement to be done, especially in the realm of antibiotics as my brother’s story shows.
It would be a dream come true to have effective and accessible antibiotics for James to take at home to avoid spending more weeks of his life hospitalized to ensure that his lung function does not plummet.
My brother’s optimism in the face of his struggles with CF has inspired me to find ways to share our family’s story with the hope of fostering change for our community. I had my first CF advocacy experience when I was 16 years old when our local CF Foundation chapter had the opportunity to meet with our congressperson’s office. I remember the overwhelming sense of purpose I felt as I shared -- alongside others in our local community -- the experiences of our loved ones with CF.
Being able to connect our experiences to our policy asks is one of the most important parts of advocacy. It takes the policy proposals that come across congressional desks and makes them stand out by connecting a person and a story to the need. Even better, when we continue to build relationships with our representatives, it helps our lawmakers remember their constituents with CF when healthcare proposals and initiatives arise. Together, we can use our voices and experiences to push for positive change.
Since my first advocacy meeting, I have had the opportunity to meet regularly with my representatives, participate in the CF Foundation’s National Teen Advocacy Day on Capitol Hill, and serve as a Policy and Advocacy Intern with the Foundation. I continue to call, send emails, and share videos with my representatives and get creative with my advocacy during COVID. Advocating for my brother has also inspired me to start a podcast, AdVocation Nation, to help others learn about ways that they, too, can use their stories and connections to support their communities.
One of the greatest lessons that my brother has taught me is resilience in the face of adversity. His actions and positive outlook on life -- despite all the challenges he faces daily -- reminds me to keep hoping and striving for better access to healthcare and an eventual cure for cystic fibrosis. Advocacy is my way of continuing to fight alongside other members of the CF community to bring about positive change in the futures of all people living with CF.
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