The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives — the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.
Now that I am feeling healthy on Trikafta®, I no longer feel special for thriving despite the challenges of cystic fibrosis. I don’t feel like I belong in the CF community anymore, and I miss that sense of camaraderie that comes from a shared struggle.
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After watching the second plenary of the 2021 North American Cystic Fibrosis Conference, I was incredibly impressed by the level of support the Cystic Fibrosis Foundation is providing to the development of the next generation of therapeutics. Developing genetic therapies -- especially those as complex as gene editing -- will take a long time and a lot of collaboration.
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The COVID-19 pandemic brought great challenges to cystic fibrosis care. As Michelle Prickett showed during plenary 1 of this year's North American Cystic Fibrosis Conference, CF care teams adapted to provide care and keep us safe. It also shows where CF care may be headed in the future.
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My experience surviving a life-threatening infection led to my role as the CF community co-chair of the Cystic Fibrosis Foundation's Infection Research Initiative. Having a room full of leading scientists listen to my story helped renew my faith that we can tackle the complex challenge of difficult-to-treat infections.
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Although 90-95 percent of people with cystic fibrosis are expected to benefit from CF transmembrane regulator (CFTR) modulators, 5 percent of the population will still need alternative therapies to address the underlying cause of their disease. Learn more about the research that the Cystic Fibrosis Foundation is doing to find treatments for the 5 percent of people with these rare and nonsense mutations.
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As both a researcher and a person with cystic fibrosis, it is an amazing experience to watch cells with rare CF mutations respond to drugs in the lab. Knowing the scientific basis for my treatments not only gives me a sense of control, but it encourages me to do my treatments.
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This year, theratyping, the process of matching medications with mutations, enabled more people with cystic fibrosis who have rare mutations to benefit from modulators. In the first plenary at the NACFC, we heard more about how theratyping will be used, as well as other future advances coming in CF treatment.
