Strength in support Myasthenia gravis patient sheds light on little-known condition
Terri Justick struggles with one of the most underrepresented diseases in the world, but by educating the public about myasthenia gravis, she discovers hope for finding a cure.
The Philadelphia native moved to Northeast Pennsylvania with her parents and three siblings at 18, and by the time Justick reached her 20s, her mother was diagnosed with ocular myasthenia gravis, a form of muscular dystrophy that affects the eyes.
“Nobody even knew what the disease was,” Justick recalled on a
recent afternoon at her Spring Brook Twp. home. “Since my siblings and I were just starting our families, no one even asked any questions. All we ever heard from her was, ‘I have to take my medicine.’”
June is Myasthenia Gravis Awareness Month, drawing attention to the auto-immune, neuromuscular disease CHRISTOPHER DOLAN / STAFF PHOTOGRAPHER in which antibodies attack the nervous system in the places where it communicates with the muscles to function. Since little was known about the disease when Justick’s mother was diagnosed, it was difficult for doctors to come to a consensus on what exactly was wrong.
“Jerry Lewis used to have a muscular dystrophy marathon, and every now and then, you would hear them talk about myasthenia gravis,” Justick said. “It would catch your ear ... but when I was diagnosed in 2014, that was the eye-opener.”
MG was never believed to be passed down genetically, but after Justick and her mother made the choice to go through genetic testing, the results verified that both women had the same defect. However, Justick doesn’t struggle with just ocular MG — she experiences daily symptoms in different parts of her body, including difficulty breathing, muscle weakness, chewing troubles and fatigue.
“It’s a fluctuating disease,” she said. “I could wake up in the morning feeling like a million bucks, and by 10 a.m., I’ll need to sit and rest.
“Every day is different. Everyone with MG is different. They call it a snowflake disease for a reason. Everybody develops the disease differently.”
While day-to-day struggles consume her life, Justick finds peace and hope in Mg-related organizations and support groups. She is a dedicated member of the Myasthenia Gravis Foundation of America, the Muscular Dystrophy Foundation and the Mgfa-recognized Harry Krewsun Myasthenia Gravis support group, whose members come from different parts of NEPA. The group meets on the first Saturday of every other month at Allied Services in Scranton.
“This support group includes education as well as encouragement for those who have MG, have a family member with MG, (are) struggling or (are) in remission,” she said. “The group started when Harry (Krewsun) and his wife, Vera, saw that there was no support here in NEPA, and they found themselves traveling from Clarks Summit to Maryland for support.”
Harry Krewsun, who died as a result of MG and complications surrounding the condition, was an important mentor in Justick’s life, especially when she started attending support group sessions.
“Harry was a one-of-akind,” she said. “He laid out everything for me and taught me what to do to advocate for myself. Being new with the disease, it was great having an ‘It’s OK. I have trouble with that too.’”
Justick hopes that if doctors can properly diagnose the disease and conduct more research, MG and other forms of muscular dystrophy can gain more recognition in the medical field and eventually be cured.
“I believe the most important thing about awareness is that MG is under-diagnosed,” Justick said. “Most people have never heard of the disease. Many doctors, including my primary care physician, have never seen it and have no idea about diagnosing it.
“Awareness will open this door. It will help others, including doctors, understand how MG changes the life of the one who has it. If we take a step back, MG can take a life, so this awareness will also save lives.”
Even though she struggles with a life-altering disease, Justick puts family before everything else in her life. On days when she feels good, all Justick wants to do is be with her loved ones.
“My children and grandchildren are my life,” Justick said.
Her son, daughter and daughter-in-law are always on hand to help, but Justick explained that her husband, Martin, takes the cake when it comes to helping her each day and pitching in around the house.
“He cleans up the dishes at night and does the weekend cooking,” she said. “He helps me clean the house so it’s not all on me. He drives me to most appointments. He always goes above and beyond.”
At the end of the day, Justick noted, acknowledgement of the disease is the key to curing it.
“With MG, there are times we get lost in the pile . ... Many of us learn to advocate or fight for ourselves,” she said. “We fight for treatments and recognition.
“I think the most important thing to me is awareness. Yes, it’s debilitating, and yes, it fluctuates. But awareness is the key.”
Terri Justick of Spring Brook Twp. looks to raise awareness about myasthenia gravis, a disease she and her mother have fought.