Art for the cure
Looking at her, a pretty, green-eyed woman, you wouldn’t know that Joslyn Newens is one of only 30,000 Americans diagnosed with cystic fibrosis, a rare genetic disease that affects the lungs and digestive system. Photographs by Cole Allen documenting Newens’ treatment will appear as part of Vox Sacramento’s A Call to Action art exhibit for May’s Second Saturday.
I’m sorry to ask, but what’s your life expectancy?
Right now, they say 37 years. I turn 31 next week.
Were you hesitant to be part of this exhibition?
No, I wasn’t. I’m in this time of my life where I’m really open to wanting to make people more aware. Probably because my own stage of the illness has progressed. This is something really difficult to deal with, and there’s this small number of us, so we don’t get the publicity in the media that cancer or AIDS does, because those are higher numbers. Not that those aren’t tough diseases, but this is tough, too.
Are you working or going to school?
The last two years since the disease progressed, I’ve had to evaluate what I can do and cannot, so I’m not working right now. I am trying to go to esthetician school—which is skin care—this June. Just something to do and keep my mind busy.
How does that impact your treatment?
It’s going to be hard. Cystic fibrosis is taxing. It takes a lot out of me: My body gets very tired, and I have to get a certain number of hours of sleep. I wake up in the afternoons because I do treatments late at night. People ask, “Why can’t you get up at 8 in the morning?” You know, it’s really hard to change a routine that takes three hours to do. It’s easier to do treatments at nighttime, because the weather is cooler. I get up about 1 p.m., and then do my treatments until about 4 p.m., and then I get ready for my day.
You do three hours of treatment twice a day?
Yeah. I have a nebulizer, which is like an air compressor that blows air through a tube. Then I have mouthpieces I put medicine into, and it blows it into my lungs. I take four different medications that treat four different problems. There’s no magic pill right now. It’s in the works, but it’s not ready or [approved by the Food and Drug Administration] yet, so this is what’s available to us.
[I use] saline, which is basically salt water. That’s the main component of what’s wrong with us: Our salt intake and outtake is messed up. It makes our mucus very, very thick in most of our vital organs. Our lungs, our pancreas—that’s where we’re damaged the most. What we have to do every day is to get this mucus out of our lungs. The saline puts salt back into our bodies. We use albuterol to open our lungs and airwaves so we can breathe, by lessening the inflammation. I put on a vest that vibrates my lung area so it loosens up the mucus. I do another airway clearance that exercises my lungs. After all that, I [use a medicine] to thin the mucus. I’m usually on an antibiotic, because people with cystic fibrosis get a bacteria that loves our lungs. It’s a total breeding ground. This is the leading cause of death for cystic fibrosis. Once it lives there, you can never get rid of it.
Do you have that bacteria in your lungs?
Yes, I do. I have the most resistant form of the bacteria. My biggest challenge is to keep that stabilized.
Why is raising awareness about cystic fibrosis so important?
We’re such a small number of people with the disease, the money [for research] comes from families, walkathons and donations. The Cystic Fibrosis Foundation [is] the one that finally started to have fundraisers and really examine this disease. Whereas before, kids with cystic fibrosis would just die, we’re finally seeing people live because of the medicine. It’s the only way people have lived to be 30 and beyond. Before, the median age was 18 or 20.
Any plans for your birthday?
I’m going to dinner and a movie with my parents, and then going to Monterey with a friend.