They call each other “cysters” and “fibros.” They celebrate one another’s good days, and commiserate over the bad ones—the days of wheezing, of headaches, of feeling too drained to even get up and take a shower. They’re a community of people living with cystic fibrosis, a life-threatening genetic disease that causes persistent lung infections, lung damage and, eventually, respiratory failure. Even though patients are supposed to stay at least an arm’s length away from each other for fear of swapping antibiotic-resistent bacteria, there’s a sense of understanding between them, particularly online.

“We are positive people,” writes Wendy Lumsden, who chronicles her cystic fibrosis journey on her blog The Living, Breathing Wendy. “I’m not sure why. We were given such a cruel disease, but we make the most of it.”

May is National Cystic Fibrosis Awareness Month, which aims to get people talking about the disease that affects approximately 70,000 people worldwide. Symptoms, which vary widely from patient to patient, can be managed with regular treatment routines that include airway clearance, medication, exercise and good nutrition.

Lumsden, who is 24, appeared for a Reddit AMA, answering questions and clearing up misconceptions about what it’s like having cystic fibrosis.

Here’s what she shared.

On cystic fibrosis being an “invisible illness”:

On what a typical day of treatment looks like:

Lumsden’s medications.

On the symptoms and how the disease is inherited:

On her own diagnosis:

On the rising life expectancy (the median survival age is 41, though a baby born with cystic fibrosis today can be expected to live longer):

Lumsden writes, “We don’t talk about life expectancy. Cystic fibrosis looks very different in everyone. That’s why it is so hard to treat. What works for one person may not work for someone else, symptoms look different, and body reactions vary so much. In my lifetime the life expectancy has risen 20 years and they are doing so much more research. I am just hopeful and thankful for how far I’ve made it and what I have achieved so far.”

On the frustrations and health benefits of playing her instrument of choice:

Here’s her performing in her senior recital:



On how people can support friends and family with cystic fibrosis:

On her outlook on life:

Check out the full AMA here. And to learn more about cystic fibrosis, visit the Cystic Fibrosis Foundation.