31 Days of CF: Perspective From a Fellow Rare Disease Patient

Photo courtesy of Bonnie Ong

Day 27 of 31

This is Bonnie Ong’s story:

My friends with cystic fibrosis are now in their 30s. Something that eluded so many for so long is now considered the “average life expectancy” for people with CF. But I don’t want the average statistic for my friends. I want them to live long, happy, beautiful lives. Even with significant medical advancements, the reality is that they live with a lifelong, progressive, terminal condition.

The truth is, I’m scared for them. I’m scared that their next procedure might be that one that tips the scales. That the next complication could be their last. I know that numbers are just numbers and that each case is different, but it still makes me pause. 

As a fellow patient with a rare respiratory disease, I understand more than most when it comes to living with limiting conditions. However, my experience could still never truly encompass the CF experience. Despite similar treatments, meds, and protocols, the CF community collectively shares a narrative, a story that is not mine.

As a friend and rare disease patient, I hope to do what I can to lift up my CF friends and amplify their stories. I hope to share their highs, lows, and everything in between. Perhaps a new breakthrough is around the corner — I certainly hope there is. Regardless, I will cherish their totally wonderful, anything-but-average lives.

Cystic Fibrosis News Today’s 31 Days of CF campaign will publish one story per day for Cystic Fibrosis Awareness Month in May. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofCF, or go here to see the full series.