Cystic fibrosis is a disease many have heard of but few understand.
But those who know someone with CF - or have it themselves - understand what this hereditary disease can do to the body. One of those who understands the ramifications of having CF is Bridgeport resident Brandi Dojack.
Cystic fibrosis is caused by a genetic defect that causes the body to produce abnormally thick mucus. This mucus can then build up in the lungs and pancreas, making it difficult to breathe and digest food properly. The result is life-threatening lung infections and serious digestion problems. The disease can also affect the sweat glands.
Pictured are Brandi Dojack and her son, Austin
"When I have a sinus infection or a cold, mine is just worse than everybody else's," Dojack said as she explained how CF affected her. Because the thick mucus makes her prone to infection, a regular sinus infection in her case is treated like pneumonia. The mucus also causes her to have frequent migraines. "It's a normal headache, but everything in my sinuses is so thick that it turns into a migraine."
According to the Cystic Fibrosis Foundation, approximately 30,000 people in the United States have the disease, and about 70,000 people worldwide. Interestingly, about one in 31 people are symptomless carriers of the defective CF gene. In order for someone to get cystic fibrosis, both parents have to carry the defective CF gene and pass it on to their child.
Most children are diagnosed by age two, but Dojack was diagnosed with CF at birth. She had an intestinal blockage, and even as a baby she took enzyme pills to help her pancreas digest food. Still, as she grew up, she didn't let the disease stop her. In fact, she ran track in high school at St. John Central and even qualified for the state meet.
She recalled, however, that a rumor had gone around at school that she would die if she didn't take her pills. "I'm going to get a really bad stomach ache, but I'm not going to die," she explained. That was a big part of the reason that she kept her condition a secret while she was growing up.
Now 32, Dojack has a different outlook on her disease. She hopes by sharing her story, she can create awareness about a disease that few know much about. Part of her agenda is to draw attention to the annual Great Strides Walk in Wheeling on Saturday, May 17 at Bethlehem Community Park. Registration begins at 10 a.m. and the non-competitive, 5K health walk begins at 11. This is the Cystic Fibrosis Foundation's largest national fundraising event and takes place in approximately 600 cities throughout the country. Money raised goes toward much needed cystic fibrosis research and drug development.
While many advances are being made in the area of CF research, lives are still cut too short, so much work is left. Perhaps one of the biggest impacts CF has on the daily lives of those who have it is the amount of time it takes to treat it.
Dojack echoes this issue and said that the most important part of her daily caretaking regime are time-consuming airway clearing treatments (ACT). She employs several different methods including: six to eight nebulizer breathing treatments daily; the use of a Flutter and an Acapella, which are types of Oscillating Positive Expiratory Pressure (Oscillating PEP) devices that vibrate the large and small airways when inhaled through; and High-Frequency Chest Wall Oscillation, a technique in which she wears a vest that vibrates to loosen and thin mucus.
She also checks her blood sugar on a daily basis, as her pancreas does not work properly, which, in turn, makes her more prone to developing diabetes. Antibiotics, vitamins and other pills complete her daily routine of CF treatments.
Dojack, however, must balance her treatments with her family. Her husband, Chad, works a lot, so Brandi spends time with their five year old son, Austin. And on top of all this, she works a couple days a week at Wheeling Hospital. While everything seems to be quite time consuming, she feels she's more efficient now. "It's almost as I get older, I get better with it because I manage my time better," she said.
She credits her family for their unwavering support and said she would definitely be worse off if not for their diligence in helping her. She notes her parents, Bruce and Jonni Callarik, often go above and beyond what's asked of them. In fact her mom, when Brandi was very young, went back to school and became a respiratory therapist specifically so she could help properly care for her daughter. "She lives just down the road, and if she listens to me on the phone and I cough, she will say, 'I'm coming down to listen to your lungs!'," Dojack said with a smile. She also said her grandmother, Pauline O'Grady, has been a big supporter of CF and makes frequent donations to help the cause.
She added, "With my family, it helps me work harder, because I said, I have to be around for them."
Her condition doesn't seem to have much of an effect on her son, who understands that she is sick and needs to do things to make her feel better. "He's just used to it because he grew up that way, seeing me with a nebulizer." Austin had a serious lung infection as an infant which worried doctors, but happily, tests showed he does not have CF.
As well as Dojack is doing in taking care of herself, she still faces problems. She got her first lung infection when she was 30 and added, "It seems like as I get older, I go downhill more." Still, she noted that she's very lucky to not have needed a lung transplant, so she said that she tries not to complain.
"You have to learn yourself. You know when your body needs a break," she stated. "When I start coughing or wheezing, I just do extra treatments; you've just got to know what you have to do to get better."
Dojack did want to make very clear her reason for finally speaking out about CF. "The purpose of this story is not to make people feel sorry for me. I want to raise awareness - we will see a cure for this," she said emphatically. "We will."
That is why supporting events like the Great Strides Walk is so important. Dojack has already benefited from some of the latest research and advancements. She recently got a new High-Frequency Chest Wall Oscillation machine that she said is the about the size of a portable radio. Her previous one was so large and heavy that she couldn't pick it up.
In addition, she has a nebulizer she can charge in the car when she goes on trips. And a new inhaled powder treatment, an antibiotic called Tobramycin, minimizes the bacteria that causes lung infections which eliminates the constant need for a nebulizer. "That powder saves me about 30 minutes," she noted.
"The advancements are just amazing," she continued, noting development of a new drug called Kalydeco. The drug, FDA approved in 2012, is the first drug available that targets the underlying cause of CF - a faulty gene and its protein product, CFTR. "This drug is for one of the mutation types - actually the worst type - but it has shown so much promise in patients who use it." To have a pill that helps the worst type of CF, Dojack feels it's just a matter of time before they get the others.
"But that's why I want to raise awareness," she said, "Because they're going to run out of funds and won't be able to continue research. We've got to raise money."
Dojack has set up a page for donations on the Cystic Fibrosis Foundation's web site. If you would like to make a donation, visit www.cff.org, click on "Donate Now," and type in Dojack's name in the box below the heading "Donate to a Walker." She will be walking with her sister-in-law and good friend.
The walk will be held Saturday, May 17 at Bethlehem Community Park, located at 123 Chapel Rd., Wheeling. Registration begins at 10 a.m. and the walk starts at 11. The event is fun and family-friendly and includes the walk, children's activities, food and festivities. If you would like to take part in the Great Strides Walk, visit www.cff.org for more information.