When people with cystic fibrosis look at our futures long-term, chronic infections are the most frightening of beasts. Chronic infections make it difficult to keep our lungs stable. Chronic infections often are the reason we need double-lung transplants. Not only do chronic infections affect our physical health, but the fear that they can cause is another burden we carry.
My sister Alyssa's death from CF, while tragic, is not unlike other stories of people who live with CF. For most of her life, she was in and out of the hospital, undergoing sinus surgeries for rampant sinus infections and dealing with gastrointestinal issues. She tried to remain normal in whatever way she could. She was never able to return to a healthy baseline despite multiple hospital stays a year and spending almost as much time on IV antibiotics as she did off them.
By 2012, my sister's chronic infections recurred enough that our family became concerned that she would not be able to recover her lung function whenever she had an exacerbation. It's no doubt that people with CF have a solid repertoire of medications available to treat infections and exacerbations, but it is a very real concern that we'll eventually reach a cliff, where our current go-to medications that consistently work well will suddenly stop working from one exacerbation to the next. In early 2013, my sister reached that point.
One of the hardest moments of my life was receiving that call. There had always been more options for my sister's infections, but her doctors at the time felt like they had run out. My parents called me, while I was a freshman at Kansas University, to tell me that no options remained. I remember feeling shocked, angry, and heartbroken. It didn't seem like that was possible. We are living in the 21st century. How could it be possible to not be able to treat what appeared to be a simple infection? Years later, I realized how naïve I had been. The fear of an intractable infection remains.
My sister's story took a sharp upward turn in the days after that call. She surprisingly recovered but still eventually needed two double-lung transplants. In March of last year, she succumbed to chronic rejection. Alyssa's last six years of life -- chronic infection followed by lung transplantation -- is something that I hope to avoid. The thought of this has led me to call for better anti-infectives for the CF community and world at large.
It is important that the scientific and medical establishment understand how critical it is for the CF community to have hope for better medications on the horizon. Hope is the lifeblood of communities of people with chronic disease. Hope alleviates fear and improves the quality of life for the CF community.
I believe firmly in the research establishment hearing and listening to the voices of the people in the community.
Because of the urgent need for better anti-infectives, members of the Research Voice advisory group and I felt strongly that the first ResearchCon focus on infections. For the last couple of months, I've been helping to plan this virtual event, and it's been an honor and a privilege.
I'm excited about it mostly because of how strongly I believe in discussing this pertinent topic within and outside the CF community of adults. I encourage people to attend this event; there will likely be opportunities to share your voice, contribute, and ask questions in some of the collaborative sessions. It will be a great chance to see what's happening in the world of research directly from doctors and researchers.
My hope is that, in the near future, nobody has to hear that devastating news -- that their infections have become resistant to all available treatments.
ResearchCon is from 7-10:30 p.m. EST on Feb. 28. The event is free, but you must register.
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