Two Edmond women learn to find happiness living with myasthenia gravis
Kay Northcutt and Jeanmarie Carper both suffer from a neuromuscular disease known as myasthenia gravis. Neither woman wants to focus on the negatives of a disease that steals their energy. Instead, they choose to find happiness within the margins.
She didn't want the audience to think she was unfriendly or unhappy, so she wrote them all a letter to explain.
“Smiling and talking are two of the most difficult things for my facial muscles to do, and the most fatiguing,” she wrote. “My non-smiling face does not mean I'm not thrilled to see you! But I'm conserving my facial muscles for preaching!”
Every smile costs the Rev. Kay Northcutt a muscle movement she can't afford to make very often.
So when speaking at a nationwide gathering of Unitarian pastors last year, Northcutt emailed the group to explain that she has myasthenia gravis, a disease that severely limits the amount of muscle strength she has each day.
Myasthenia gravis is a chronic autoimmune neuromuscular disease. It is caused by a defect in how nerve impulses are transmitted to muscles. Normally, when nerve impulses travel down the nerve to tell the muscle to move, the nerve endings release a neurotransmitter called acetylcholine, according to the National Institute of Neurological Disorders and Stroke.
Acetylcholine then travels through the body and binds to acetylcholine receptors, which then are supposed to activate and generate a muscle contraction, according to the institute.
But with myasthenia gravis, the body's immune system produces antibodies — which usually are produced to ward off intruders in the body — that block the receptors for acetylcholine. This means the nerves cannot communicate to the muscles to contract or move.
And the more attempts a nerve makes to communicate with a muscle, the more exhausted a person with myasthenia gravis becomes.
Northcutt's symptoms started when she was a homiletics professor, teaching the art of preaching at Phillips Theological Seminary in Tulsa. During class, Northcutt's left eye would start to droop. By the end of class, she would be holding her eyelid up.
This is a common symptom of myasthenia gravis.
Another symptom is blurred or double vision because of weakness of the muscles that control eye movements. Northcutt would see double vision vertically, meaning things would be stacked on top of each other.
People with myasthenia gravis also can have difficulty swallowing. Northcutt dropped to 113 pounds because she could not find the muscle strength to organize a swallow. Northcutt felt like her muscles were being peeled away from her bones.
“You just start to lose control,” she said.
As with many rare diseases, a diagnosis is often a hard-earned achievement. In 2008, after 18 months of doctors' visits and a trip to the Mayo Clinic in Minnesota, Northcutt was diagnosed with myasthenia gravis.
Last year, she went through nine rounds of chemotherapy. She still receives one treatment every six months.
Northcutt has gotten to know other women with myasthenia gravis, like Jeanmarie Carper, of Edmond.
Carper was diagnosed with myasthenia gravis at age 25. Myasthenia gravis usually is found in women younger than 40 and men older than 60. It is estimated that somewhere between five and 14 people per 100,000 have myasthenia gravis.