Kaitlin Lanham is patient concierge in the Akron Children’s Mitochondrial Center of Excellence.
Kaitlin Lanham knows what it’s like to receive a difficult diagnosis.
In 2021, while working as a certified personal trainer at Orangetheory Fitness, she started to experience an array of symptoms that ranged from vision loss to difficulty walking to nerve pain.
“I had seen my primary care doctor, but my symptoms kept evolving and changing,” she said. “I couldn’t get a good grasp on it, and my providers couldn’t either.”
In August 2022, as her symptoms progressed, a field vision test showed she had significant vision loss and damage to her optic nerves. Her optometrist sent her to the emergency room for additional testing, where she received a diagnosis: multiple sclerosis (MS), an immune-mediated disease in which the body’s immune system attacks the central nervous system, impacting the brain, spinal cord and optic nerves.
“I was in the hospital on IV steroids and other medications to try and help my eyes, but with MS, when you’re in a flare, the only thing that helps is time and rest,” she said.
Kaitlin Lanham with her team at the 2023 Walk MS event in Akron
After her diagnosis and treatment, while adjusting to life with a chronic condition, Kaitlin considered her next steps.
“One core value of mine is to help others,” she said. “That is what drives me and brings me a lot of joy. When I thought about what I can do with this experience, what I can do with my love of a healthy lifestyle, I knew I wanted to get into Neurology. I felt like there were gaps that I wanted to help fill with my own experience. When you have a chronic disease, it goes beyond the 4 walls of the hospital or your health care provider. Chronic is for life.”
Kaitlin joined Akron Children’s NeuroDevelopmental Science Center in December 2022, as patient concierge in the Mitochondrial Center, a designated Center of Excellence by the United Mitochondrial Association.
In her unique role with the Center, Kaitlin works closely with patients and their families to create a personalized experience, as they navigate all aspects of their care for mitochondrial disease. She develops patient-focused initiatives, raises awareness for mitochondrial disease and advocates for the Center.
“As part of my role, I bring the fun, the activities and the non-clinical side of things,” she said. “I try to form a relationship with the patients on a human level and let them know what we’re doing to support them holistically.”
To build those connections with her patients, she often leans on her own recent experience.
“Living with MS, I feel like I’m more on the patient side, than the medical side of care,” she said. “I can relate to our families and all the day-to-day tasks that they go through to manage a chronic disease. Our health care system is complex and confusing; it can leave you feeling frustrated and isolated. It’s a lot to take on and leaves you feeling like you can’t talk to others about your disease.”
Kaitlin Lanham holding her niece
In her time at Akron Children’s, Kaitlin has already formed lasting bonds with patients and their families in the Mitochondrial Center, and she continues to look for new ways to support their medical journey.
“I know what it’s like to walk into a doctor’s office and feel overwhelmed,” she said. “No one prepares you for that. I want to bridge the gap between the clinical side of our work and the patient side to make our parents feel empowered.
“These parents are so inspiring. They are delt the hardest situation imaginable and navigate it with such grace and kindness. It makes me want to be a better person. If I can put a smile on their face, I feel like I’ve accomplished something. I want them to know that we care. They matter, and I’m here if they want to talk — neuro patient to neuro patient.”
Kaitlin Lanham with her family at the 2023 Walk MS event in Akron.
