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28th February 2019

Living with a rare disease

Gunnar Esiason just celebrated a major milestone: his good health.

When you have cystic fibrosis (CF) – a rare genetic disease that creates a build-up of thick sticky mucus in the lungs, digestive system and other organs that can lead to life-threatening lung infections – every day spent out of the hospital is cause for celebration.

“Despite the issues I’ve had with my chronic lung infection, I’m actually the healthiest I have been since 2011,” 27-year-old Gunnar tells This Is MedTech. Diagnosed at the age of two, he’s had a long time to get a firm grasp on what works best for him, and he believes that his mental fortitude combined with a disciplined treatment regime are key to his success.

“Most recently, I feel like I have found the perfect balance between treating my illness and living my life to the absolute fullest. I take great pride in my ability to stay 100% compliant with my treatment routine, while also being able to work, travel, and do whatever my heart desires,” he says. His daily treatment involves taking multiple medications and using a special vest designed to clear the mucus from his airways. He also supplements his diet via a feeding tube because the mucus obstructs his pancreas and stops natural enzymes from helping the body break down and absorb food.

“Some things are out of my control, but I seek to control what I can when it comes to my health, and that means my relationships with my care providers, support system, as well as having a handle on the evolving science in cystic fibrosis.”

Gunnar views the medical advances in CF treatment as “nothing short of a miracle”. He remembers back to the 1990s and early 2000s when treatment options were limited. “I used to spend about 30 minutes in the morning and again at night doing nebuliser treatments and airway clearance exercises. As I grew older, though, I started to pile on more treatments, thanks in large part to medical innovation,” he explains.

He also praises his parents for having the foresight to keep him active as a child. “I played all sorts of sports when I was young, from ice hockey to football, soccer, baseball and lacrosse. Looking back, my parents’ willingness to keep me active is what kept me so healthy in the early years,” he notes. “We now know that exercise is a suitable form of airway clearance for people living with cystic fibrosis, and I was living breathing proof of that concept!”

As an adult, the biggest challenge Gunnar faces is managing his chronic respiratory infection. “As people with cystic fibrosis grow older, the bacteria in our lungs develop more and more drug resistance until we start to lose antibiotic choices, and that has been my biggest problem,” he points out. The symptoms from his infection include shortness of breath, increased cough, recurrent haemoptysis (coughing up blood), chronic fevers, muscle ache and other issues. “Since my antibiotic arsenal has grown weaker and weaker, I am forced to make difficult lifestyle, professional and social decisions when my symptoms flare,” says Gunnar.

Nevertheless, he remains optimistic about the future. “I am alive today because of tens of thousands of hours of researching, fundraising, volunteering and collective work towards a cure. We find ourselves in what I call the golden age of cystic fibrosis drug and medical technology development,” he comments. Medtech has also made CF diagnosis as simple as getting a blood test and a sweat test, which measures the salt levels in a person’s sweat.

Gunnar is passionate about giving back. He’s Director of Patient Outreach at the Boomer Esiason Foundation, a charity his parents set up to heighten awareness, education and quality of life for those affected by the disease, while providing financial support to research aimed at finding a cure. Since it opened in 1993, the foundation has raised about $140 million in the fight against CF.

Despite the daily challenges of living with CF, Gunnar refuses to give in to self-pity. “At the end of the day, my health is my motivation. I can do whatever I want to do when I’m healthy. I can’t do what I want to do when I’m not.”

Cystic fibrosis is just one of over 6,000 rare diseases affecting tens of millions of people around the world. Rare Disease Day takes place on the last day of February each year and aims to raise awareness about these diseases and their impact on patients’ lives.

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