Survivor:  “I Wouldn’t be Alive if I Didn’t Advocate for Myself” 

Erin Mark— A Ballston Lake resident born with cystic fibrosis, a rare, life-limiting genetic disease. Doctors said she would not live past 18 years old. When she was five years old, she overheard her father speaking with a friend about her diagnosis. Even at five years old she understood the ramifications of the disease and promised herself to “cram as much joy in life as possible.” 

According to the Mayo Clinic, cystic fibrosis affects the cells that make mucus, sweat, and digestive juices. These fluids are usually thin and slippery to protect the body’s internal tubes and ducts and make them smooth pathways. But in people with cystic fibrosis, a changed gene causes the secretions to become sticky and thick. The secretions plug up pathways, especially in the lungs and pancreas. Cystic fibrosis gets worse over time and needs daily care.

Throughout her life she was constantly on antibiotics; she eventually built up an immunity to oral antibiotics and needed IV antibiotics administered in a hospital. In 2017, when Mark was 33, she was entering into the late stage of the disease; her lungs were failing. In a doctor’s visit to talk about her options going forward, Mark was completely dismissed. Her doctor told her, “You should feel lucky for all the extra years you had.”

Mark left the doctor’s office feeling completely helpless and broke down in her car. But in that moment, she knew she had an obligation to herself. “I thought about that five-year-old girl, giving up wasn’t an option.”

She quickly looked for a second opinion and contacted all the cystic fibrosis doctors in her insurance network. She connected with Dr. Patrica Walker, a specialist in cystic fibrosis working at Mount Siani in New York City. Mark had a completely different experience with Dr. Walker. She recalls Dr. Walker telling her, “I can’t promise anything, but we’ll try everything we can, and I will never give up on you.” Mark said, “To hear her say I wouldn’t give up on you was a moment of relief.”  

During this time in her life Mark was giving keynote talks about how to live a life without regrets. How growing up with a disease doctors said would eventually kill her gave her a unique perspective on life. She says, “I learned how to live because I learned how to die.” 

Mark recalls during this time in her life being in the hospital weighing 79 lbs., not knowing if she would wake up to see tomorrow. She turned to set an alarm so she could wake up to eat before her next IV. She noticed that you could change the alarm name to wake up to and wrote “you woke up today.” A powerful reminder that tomorrow is not promised, you get another chance at life if you wake up. 

However, because she sought out a second opinion, she was able to hold on until 2019 when a breakthrough drug, Trikafta, was approved by the FDA. The drug saved Mark’s life by changing how the gene works in her body. All of a sudden, she had a new prognosis and a newfound outlook on life. Instead of being grateful for all the extra years she already had, she awarded herself a new chapter in her life because she advocated for herself. 

Mark now travels across the country, sharing her story at keynote talks about the importance of advocating for yourself. “I wouldn’t be alive if I didn’t advocate for myself” she told Saratoga TODAY. Listen to Mark’s powerful testament of advocacy in her new Ted Talk, https://www.youtube.com/watch?v=wjjPwKtEhOQ.