Ben Griffith was in a hospital room trying to recover from a collapsed lung when a doctor told him he had cystic fibrosis.
All was quiet for a minute, except for the typical hospital sounds. Machines beeped and whirred. Nurses traversed the halls. Then came the sound of his mother sitting nearby starting to cry.
Griffith was told the disease was genetic, but nobody in his family had dealt with it before. Twenty-one years of age, he had spent most of his life believing he had a common case of asthma.
With his parents by his bedside as his doctor told him about the disease and how the average life expectancy was the late 20s or 30s, the shock continued.
“Because I went 21 years without knowing, I basically had to learn to live all over again,” Griffith said.
Cystic fibrosis, or CF, is a disease that affects the glands that create mucus in a person’s body, according to the National Heart, Lung and Blood Institute. It causes the body to produce mucus that is thick and can cause blockages in lungs and other organs, which can be fatal. The disease can lead to other problems, like cysts and fibrosis (scar tissue) in the lungs, as well.
Griffith said CF was once considered a death sentence for anyone who was diagnosed with it. According to the Cystic Fibrosis Foundation, children with the disease weren’t expected to live past elementary school as recently as the 1950s.
Now, people with the disease are expected to live into their 30s because of medical treatments that did not exist then. Griffith said he has heard of people living into their 40s and 50s — even 80s. He said he is hopeful that scientific advances will continue to allow people with the disease to live longer lives.
When Griffith was 20, he traveled with the Cleveland-based New Life Drama Company. While on the road, he began having some health problems, and a hospital doctor told him he had chronic obstructive pulmonary disease, or COPD. It, like CF, can cause mucus to build up in the lungs, among other issues.
He later moved to South Carolina and became “very, very, very, very ill.” Doctors did a scan and found only one of his lungs was working properly. The other lung had collapsed due to the pressure a large amount of mucus had put on it. After another test came the bedside conversation that revealed he had CF.
For the month or so he remained in the hospital, Griffith said he was busy going through “the stages of being scared.” There were a lot of uncertainties, including the doctor’s implication he would not have a normal life expectancy.
“It changed my whole life around,” he said.
Now his schedule gets planned around pills and breathing treatments.
More than 70 percent of all people who have CF are diagnosed before the age of 2, meaning that treatments can start earlier. Because he went so many years without treating the disease, Griffith said his body is “playing catch-up.” But he’s not letting that stop him.
“I don’t allow CF to have limitations on me,” Griffith said. “I give CF its limitations.”
He doesn’t have the energy of an Ironman triathlete. He said he has to take extra care not to catch colds or viruses because of what his respiratory system has already been through.
The key, he said, is being determined to keep the disease from getting in the way of his personal goals.
Griffith is originally from Kentucky, but moved to Cleveland in 2008. He is now a 23-year-old looking back at his diagnosis. The shock has subsided, and he said he’s now much more determined to live life to its fullest.
He has been taking classes at Cleveland State Community College, spending time with his new wife, Aly, and planning his future career.
“CF is not a death sentence,” Griffith said. The difficulties of the disease have taught him the importance of living one day at a time.
“The only thing it stops me from doing is what I let it stop me from doing,” Ben said. “It cannot stop you from dreaming.”
Griffith said one challenge has been changing his career plans. He said it was his dream to be a soldier in the U.S. Army, but his disease prevents him from gaining the necessary medical clearance to serve.
Instead, he is in college studying criminal justice with the hope of eventually working with a police department.
“I’ve always wanted to serve in the Army,” Griffith said. “Another form of public service would be criminal justice.”
He explained his situation was pretty typical for adults with CF. Even if they are able to manage the disease well, it can still limit their job possibilities.
As with any disease that is not discussed on a daily basis, Ben said many people — including potential employers — have misconceptions about how CF affects a person’s daily interactions.
“I just want people to be aware that CF is out there,” Ben said. “Often they hear about it, but they don’t know what it is.”
He said some assume the disease is “just like” asthma, while others ask him if he has something that is contagious.
CF is not the common cold; it is a disease that results from defective genes passed down from ancestors and found in a person’s DNA.
Griffith said he was the first person in his family to be diagnosed with the disease, which left his family sad, shocked and angry that doctors had not found out he had it earlier.
Despite their shocked reactions, Griffith said he wants people to know how appreciative he is of his family’s support. He added it must not have been easy for his family to see one of their own not doing well.
“My family has been my biggest support,” Griffith said, mentioning his wife, brother and parents. “My family has been so patient through all of this.”
Griffith and his wife, Aly, know the day-to-day difficulties of living with the disease.
They recently celebrated their first wedding anniversary. Though they knew Griffith’s battle with CF would be part of their lives together, Aly said it actually drew them closer to each other before they even got engaged.
Aly said Griffith was her “best friend” for two and a half years before they got married. When Griffith was diagnosed, she said she was shocked, but it did give her a sense of urgency to let him know she loved him.
“Honestly, it just made me closer to him,” Aly said. “When that happens, you want them to know exactly how you feel.”
She said she does not know what it is like to deal with the disease and that it has been hard to see her husband struggling with it. Watching a loved one deal with a serious health issue can be quite stressful, she added.
However, Aly has chosen not to focus on the stress.
She echoed Griffith’s explanation of living day-to-day. The result is trying to focus on things that matter instead of having silly conflicts over things that don’t.
“It’s easier for us to see how valuable time is,” Aly said. “I think it [Ben being diagnosed with CF] was a blessing in disguise. It just makes us stronger.”
She listed some things — one of them being the fact that she and her husband celebrated their first anniversary in a home of their own — to show that they have made a good life together despite the uncertainties of Griffith’s health.
“We have so many blessings,” Aly said. “We can’t just focus on the one bad hand we were dealt.”
Griffith said he is hopeful for the future as he and others wait for a cure to be found for CF.
Last year, the Food and Drug Administration approved a new drug called Kalydeco, which treats the causes of CF in people with one of the most common genetic types of the disease. In February, the company that manufactures the drug, Vertex Pharmaceuticals Inc., announced that it was entering phase three of clinical trials.
While waiting for science to catch up with the disease, Griffith said he plans to live well. His advice to others walking in similar shoes is to keep going and stay positive.
“Life can be taken at each moment at a time,” Griffithsaid. “You can enjoy life. It’s not a limit on you. It’s a limit on surroundings around you.”
Two local events to raise money for CF research, the Great Strides walk and 65 Roses 5k [3.1 mile] run, will take place on April 13 at Lee University. For more information on how to get involved, visit the event website, www.leeuniversity.edu/greatstrides, or call 614-8406.