Monica Seles, the former tennis star, has experienced a couple of rare misfortunes in her life. In April 1993, Seles was playing at a tournament in Germany when a fan, fixated on her tennis rival Steffi Graf, stabbed Seles on court. She was two years away from the game after the frightening attack.
More recently, Seles, now 51 years of age, was diagnosed with the relatively rare neurological condition, myasthenia gravis (grave muscle weakness). She went public about her condition at the US Open this summer, three years after being diagnosed. She dates her first symptoms to 2019, when she started experiencing double vision and extreme weakness in her arms and legs. She would see two balls coming at her on the tennis court instead of one.
“I would be playing with some kids or family members, and I would miss a ball. I was like, ‘Yeah, I see two balls.’ These are obviously symptoms that you can’t ignore,” Seles says. “And, for me, this is when this journey started. And it took me quite some time to really absorb it, speak openly about it, because it’s a difficult one. It affects my day-to-day life quite a lot.”
Myasthenia gravis is an autoimmune condition that affects how our voluntary muscles work. It occurs when the immune system attacks the neuromuscular junction – the point at which the muscles and the body’s nerve cells meet. This reduces the ability of the pathway to transmit neurotransmitters across the junction, affecting the way the muscles contract and function. It most commonly affects the muscles that control the eyes and eyelids, facial expressions, chewing, swallowing and speaking. But it can affect most parts of the body.
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Common symptoms of myasthenia gravis include droopy eyelids, double vision, difficulty making facial expressions and problems with chewing and swallowing. A person affected by myasthenia may have slurred speech, weakness in the muscles of the arms, leg and neck, and shortness of breath. The symptoms tend to get worse when you’re tired. Many people find they’re worse towards the end of the day, and better the next morning after getting some sleep.
It is estimated that myasthenia gravis affects 150 to 200 people per million worldwide, while a study performed by neurologists at St Vincent’s hospital in Dublin found an overall prevalence rate of the condition in Ireland of 15.38/100,000. It most commonly impacts young adult women (under the age of 40) and older men (over 60), but it can occur at any age.
It can be frustrating for people when the first symptoms arise. These tend to wax and wane which, along with the rarity of the condition, often results in a delayed diagnosis. It took two years of tests and scans before Seles was diagnosed with the chronic neurological illness.
The main test for myasthenia gravis is a blood test to look for a type of antibody that attacks the neuromuscular junction. But not everyone with the condition will have a high level of antibodies – again, this contributes to the diagnostic challenge. Other investigations include electromyography, which can detect whether the signals sent from the nerves to the muscles are being disrupted, as well as a CT or MRI scan.
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Adding to the uncertainty, we don’t know what causes myasthenia gravis. It is thought to be linked to the thymus, a small gland situated behind the breastbone in the chest. The thymus is believed to produce the antibodies which attack the neuromuscular junction.
There is no cure for myasthenia gravis, so treatment focuses on reducing muscle weakness. Pyridostigmine is a first-line treatment which works by preventing the breakdown of the neurotransmitter acetylcholine at the neuromuscular junction. Steroids and immunosuppressant drugs may also be used, while surgery to remove the thymus gland may help some with the condition.
By describing her experiences with myasthenia gravis, Seles brings a welcome awareness to a rare disease.
