Photo by Melissa Mullins
Age: 39 • City: Bealeton, Virginia
May is Cystic Fibrosis Awareness Month. Cystic fibrosis is an inherited, life-threatening genetic disorder that causes severe damage to the lungs and digestive system. It affects the cells that produce mucus, sweat and digestive juices. Instead of lubricating, the secretions clog tubes, ducts and passageways, particularly in the lungs and pancreas.
What are some of the overarching health problems caused by cystic fibrosis (CF)?
Setting the lung issue aside, the pancreatic and digestive issues are the second largest with CF. If you can’t break down food, you can’t get proper nutrition and that effects growth. The lack of nutrition can lead to neurological disorders.
How has CF affected your quality of life?
I have been blessed. I’m a mild CF case. At 39, my lung function is at 40 percent. Like many chronic diseases and illnesses, though, it ends up being ‘I can’t do this,’ or ‘I cant do that’. I like to play basketball. Aside from not being athletic at all, I can’t run a basketball court. I would like to do many things, but I can’t. As with any chronic illness, you have to be aware of what you push yourself to do.
What was your childhood like with CF?
I was in and out of hospitals. The doctor wants to see you every three months to make sure that there isn’t something that they’re missing. It becomes a part of your routine and you get used to it. It becomes your normal.
Your younger brother also lives with CF. Is it common or an anomaly?
It’s a recessive gene. If both parents carry, they have one copy. They have a 1 in 25 chance in having a child with CF. That child will be affected by CF somehow because they will be at least a carrier. If someone has CF and they marry or have a child with a carrier, those odds will be huge. You have a 50 or 75 percent chance that the child will have CF and if nothing else, they will be a carrier. It’s not uncommon for a family to have multiple kids with CF. It’s like winning the lottery—a terrible, terrible lottery.
How has treatment of CF changed in the past 35 years?
A person born now with CF has a vastly different outlook than someone born [before 1980].
If you were a person with CF in the 1950s, you weren’t going to make it to middle school before you died. The life expectancy was between 5-15. Now, with common medications that are available over-the-counter or easily in the pharmacy, there is no reason to think that a person with CF today can’t live into their 40s and 50s. It seems young, but it’s better than 5. Every year we’re adding about three-quarters of a year to life expectancy. With some of the drugs in the pipeline, I don’t see why a person born with CF now couldn’t live to 60 or 65 easily. Now we’re talking about CF treatment as a whole. People still do die at 5, which is why the campaigns and awareness are so important.
You’re 39. Do you have concerns about the next 10 years of your life?
At this point, being classified as disabled and meeting all of the criteria, and being at the edge of ‘If I am sick, I’m really sick,’ I am thinking about the next 10 years of my life. And, as a younger person, it’s an issue to look at life and look at my children and wonder when we talk about the future, will I be a part of that future. I’m trying to be realistic. There are only so many things scientifically that can be done to improve my health. Reality is reality. I have tried to be emotionless about it, and that doesn’t always work. I think that people with CF learn to deal with their illness early on. This isn’t new. This is something you look forward to.
What concerns do you have for your family?
My stepdaughter has CF. She’s 16 going on 17. Her lung function is good. She’s active and that’s what we’ve tried to do to—keep her healthy. They have found out that the more lung function you can carry into your early 20s, the more likely you can keep that lung function long-term.
I think a lot of times she will say things to me about her health because she does have someone there who has experienced it. I think that’s good for her. We do have things we have to avoid. We don’t eat after each other or drink after each other. My germs are more developed and drug-resistent compared to what she has. Conversely, I am a little harder on her than I should be. She’ll say, ‘I scraped my knee’ and I don’t coddle her. I’ll be a little harder on her because I know she will deal with more difficult things. Whether that hurts or benefits her, I don’t know.
You’re involved in raising awareness for cystic fibrosis. Talk about that.
Generally, its a Caucasian disorder, but it is a worldwide problem. It is something that can affect every race. The issue is that there are so very few people with CF that many people have never heard of it.
One of the things I’m trying to do is use social media to grow a global awareness where everyone is doing the same thing at the same time. There are 70,000 people with CF worldwide. In the U.S. alone there are about 10 million people who carry the faulty gene that could cause CF in their child. So with our campaign, it’s about letting people know its an issue. We can’t cure it, but we can all take a second to spread the awareness.[In last year’s Silent for 65 campaign] I want to say that 10,000 people acknowledged it. I’m hoping to get the same commitment this year. We reached 30 countries. Between Instagram and Facebook, about 500 people submitted pictures with their finger over their mouth.
Who Can help and how?
Anyone can help by getting the buy-in that we are a single community. Getting people to buy-in to ideas is difficult, especially with social media, since everyone can put their opinion out there—good or bad. The best thing you can do if you cross a campaign is to pass it on.