Last weekend, I attended the 2014 National Cystic Fibrosis Family Education Conference, in Redwood City, California. Experts and leaders from the cystic fibrosis (CF) community presented the latest on research and care of this genetic disease.
What is cystic fibrosis?
Cystic fibrosis, or CF, as it is more commonly referred to, is a hereditary disease which causes a thick, sticky mucus that clogs the lungs and obstructs the pancreas. It is the most common lethal hereditary disease in the white population . Approximately 70,000 people have been diagnosed with CF worldwide . In the 1950s, people with CF did not live long enough to attend elementary school, but thanks to advancing medical research, the current median predicted age of survival is early 40s .
I spoke to many parents and relatives of CF patients attending the conference. Due to infection risk, it is difficult for people with CF patients to attend events where other CF patients are present. The family members I spoke to were all extremely knowledgeable about the latest clinical studies for CF treatments. I was in awe of how close knit the CF community really is; it included not just the patients and family members, but also the researchers, academics, volunteers and the health providers.
It was wonderful to hear Isabel Stencel-Byrnes speak about resilience, and the importance of adapting to change as a CF patient. At 41 years old, Isa is a thought leader in the CF community. She shared her coping mechanism with us, using events from her life, both the ups and the downs. Isa incorporated many inspirations quotes in her talk, including one of my favourites:
“Today is the tomorrow you worried about yesterday.”
Isa is half Japanese, like me. My Australian husband carries a CF gene, so hearing Isa’s talk was a big wake-up call to me that although CF in Asian populations is very rare, it is not impossible.
The session I enjoyed the most was the panel discussion, ‘Adults with CF: Tips for Living an Extraordinary Life’. Five adults living with CF generously answered questions about growing up with CF and how they overcame the transition into adulthood. Activities we don’t think twice about, like travelling overseas requires meticulous planning if you have CF. The panel shared valuable advice with us, such as packing 1.5 times the medicine you need for your trip, and making sure you carry an explanation of CF written in the local language.
I also had great conversations with people working hard to care for the CF community, including representatives from AbbVie, Electromed’s SmartVest and CF Services Pharmacy. Everyone is genuinely passionate about making the lives of the CF community easier, and raising awareness for CF so that some day soon, we can find a cure.
 http://emedicine.medscape.com/  http://www.cff.org/