Treatment ‘miracle’ forwomanwith rare disease
Cealie Lawrence went to work as a server at a Bob Evans inWesterville onwhat started like any other Tuesday morning inMarch 2005 when she suddenly went blind in both eyes.
“I panicked,” said the now 60-year-oldWaverlywoman. “I couldn’t see anything but darkness and a little light.”
A coworker immediately took Lawrence to Mount Carmel St. Ann’s Hospital where health care workers ran numerous tests and did a spinal tap. Nobody could figure out what was wrong with her, so she spent aweek in the hospital.
Lawrencewas eventually diagnosed with neuromyelitis optica spectrum disorder (NMOSD), a chronic disorder dominated by inflammation of the optic nerve and spinal cord, which can cause blindness and lead to paralysis.
“This is a disease that frightens us,” said Dr. Geoffrey Eubank, medical director of the Mid-Ohio MS Center at OhioHealth Neurological Physicians. “We know howbad it can be. We know it can put people in wheelchairs, make them blind, really impact them.”
There’s an estimated 4,000 people living with NMOSDin theUnited States. It ismorecommoninwomen andtypically occurs between
ages 40 and 50, according to the National Multiple Sclerosis Society.
NMOSD is similar tomultiple sclerosis, a central nervous system disease that disrupts the flow of information between the body and the brain, and eventually can lead to permanent damage or deterioration of the nerves.
After Lawrence’s hospital stay, her eyesight slowly returned, but she started suffering paralysis from the neck down months later. After that, she moved in
with her son in Portsmouth. Through physical and occupational therapy, she was able to eventually walk again.
But her disease continued to rage on through relapses and shemademore than 100 hospital visits from 2006 to 2013.
“It was really bad,” she said.
A little over five years ago, Lawrence was enrolled in a clinical trial for Enspryng, a treatment for NMOSD, through OhioHealth and Eubank and she hasn’t had
any relapses since starting the treatment.
“It’s a miracle,” she said. Enspryng, which reduces attacks of NMOSD, was approved by the U.S. Food and Drug Administration in August.
“ThankGod for the development of this medication because I truly believe it’s going to help a lot of people in my situation,” Lawrence said.
Enspryng is an injection that is given under the skin. The first three injections are given two weeks apart and are then administered once a month, according to the FDA. Lawrence goes to OhioHealth RiversideMethodistHospital once a month to receive the treatment.
Side effects include the common cold, headache, upper respiratory tract infections, gastritis, rash, joint pain, extremity pain, tiredness, nausea, infections, increased liver enzymesanddecreasedneutrophils (type ofwhite blood cells) counts, according to the FDA.
Patients have the option to administer the injections at home, said Dr. Kathleen Hawker, the medical directormanager of neuro-immunology at Genentech, a San Francisco-based biotechnology corporation that manufactures Enspryng.
Three treatments have been approved by the FDA to treat NMOSD: Soliris, approved in June 2019; Uplizna, approved June 11, 2020; and now Enspryng.
It’s important to give NMOSD patients choices for treatments, Hawker said.
“Not allpatients are alike,” she said. “So to give options to patients in terms of their lifestyle, what works, how well they feel . I think this is really, really important.”
No longer suffering from paralysis or vision loss has given Lawrence a newlease on life.
“It’s like being 20 years and coming out of college and starting life fresh again,” she said. “This ismy second chance at life and life more abundantly.”
After living with her son and his family for five years, Lawrence is nowable to live on her own and moved into her two-bedroom house in Waverly in July.
“I take care of me now,” she said. “I’m just living life whereas I couldn’t say that before. I was just existing before.”
She is able to enjoy her passion for cooking, play with her five grandchildren and is even going back to school online for a two-year degree in psychology for crisis counseling through Liberty University, a Christian college in Lynchburg, Virginia.
“That’s a passion ofmine because there are a lot of individuals, especially my age that are suffering in silence,” she said. “I believe I could be a big influence and a big help to them.”
Throughout her journey withNMOSD, she has leaned heavily on her faith in God.
“I feel if I didn’t have God in my life, I truly feel that I wouldn’t be here right now,” she said. “I’ve had faith all along that even when I was paralyzed, lying in that hospital bed on my back not being able to feed myself or do anything for myself, I maintained that I was not going to be flat on my back for the rest of my life.”