GRAND RAPIDS, Mich. — Most people don’t think twice when asked to take a deep breath at the doctor’s office. But for Sarah Rusnell, it’s a true test of how far she’s come in the last few years.
On this day— her lungs sound clear and it brings a smile to her face. That’s because —for most of her life— breathing easy didn’t come easy for this cystic fibrosis patient.
“I had routine therapies, inhaled medicines, physical precautions that we do on my body, and a massive amount of pills that I took every single day,” Rusnell said, explaining life with the lung and digestive condition.
Daily tasks are taxing for a body plagued by a disease that causes severe lung infections, persistent coughs, and getting sick often, among a slew of other symptoms. But worst of all for cystic fibrosis is early death.
“When I was born, the average life expectancy was Elementary School,” Rusnell explained.
The body eventually succumbs to the disease at an early age, that is until recently.
“I never thought in my career, I would see changes this profound in such a short period of time,” admitted Dr. Marc Mcclelland, the director of the Adult Cystic Fibrosis Care Center at Corewell Health.
He’s dedicated his career to helping patients live life to the fullest, but that often meant treating them only into their late 20s or early 30s. That is not the case, however, anymore.
“They're projecting that children who are started on modulators at a young age will most likely live into their 70s and early 80s,” Dr. Marc McClelland elaborated. "Basically— essentially— like a normal life expectancy."
A modulator —trialed by some here in Grand Rapids— now widely used to treat about 94% of patients, attacking the disease at the cellular level.
—For Sarah, its effects were almost immediate.
“I could literally feel that mucus leave,” she marveled.
“Having a body completely change in a relatively short period of time was so exciting.”
Cystic Fibrosis is no longer the death sentence it once was.
Sarah’s outlook on life has changed dramatically at the age of 38— as it has for so many patients.
“A lot more women with CF are, because they're healthier, choosing to have babies and able to have babies and raise families.,” Dr. Marc Mcclelland exclaimed. “It's been absolutely transformative.”
Today Sarah leaves the CF clinic with hopes and dreams she never thought were a reality.
“Sometimes, I even forget that I have CF," Rusnell told us. "And the before the modulators feels like a different life.”
The Friends and Families of Cystic Fibrosis is hosting the 2nd annual Masquerade Ball on March 23rd to help raise money to continue helping families affected by the disease.
