Jaime S., a UPMC employee, was diagnosed with spinal muscular atrophy as a baby. However, the treatment options weren’t as advanced as they are today.
Spinal muscular atrophy is a neuromuscular disorder that causes muscular weakness. For Jaime, it significantly impacts her ability to breathe. However, her life changed when she started using noninvasive ventilation.
About 16 years ago, she began seeing Patrick Strollo, MD, a pulmonologist at the UPMC Comprehensive Lung Center. He recommended using the noninvasive ventilator — a machine that uses pressurized air — to help manage her breathing struggles.
“With the ventilator, I can inhale and talk louder. It keeps my lungs clear,” Jaime explains. “It has definitely changed my life. I feel better, I don’t feel tired, and I can breathe easier.”
Jaime has been using the noninvasive ventilator for 14 years now and not only does it help her physically, the machine also eases anxiety that can arise from not being able to take a full breath.
“When you can’t breathe, you go into panic mode,” she explains. “So, being able to breathe takes a lot of anxiety away.”
In recent years, Jaime has also seen Jennifer Newitt, MD, another pulmonologist at the UPMC Comprehensive Lung Center. From the doctors to the respiratory therapists, the clinical team has been immensely helpful in Jaime’s journey with spinal muscular atrophy.
Not only have they been there to treat and advocate for her needs, they are also a helpful resource for her sister, who provides support and care for Jaime at home.
Support from Her Care Team
“The team is truly amazing,” Jaime says. “Sometimes when I feel like I need adjustments made, like more air pressure, they walk my sister through updating it.”
Ultimately, using noninvasive ventilation has played a major role in helping Jaime live life to her fullest potential.
“It’s given me the ability to work full time for as long as I have,” she says.
While Jaime primarily works from home, she travels throughout the southwest Pa. region a few times a year to see clients. She wouldn’t be able to make these trips without the help of noninvasive ventilation.
“I wouldn’t be able to drive an hour without the machine,” she explains. “And when I get there, I wouldn’t be able to talk and do my job.”
Jaime is grateful for the support of UPMC’s pulmonology team over the years. For anyone else experiencing a neuromuscular disorder, Jaime emphasizes the importance of seeking care with a specialist.
“I go to Dr. Strollo and Dr. Newitt for everything because they specialize in muscular disease and they know what to advocate for,” Jaime shares. “It is definitely lifechanging to have them as doctors.”
