(BPT) – A 73-year-old rocket scientist, a 16-year-old budding musician, a 26-year-old professional with a passion for dance—what could they all have in common? Each has been diagnosed with a disease whose symptoms are often mistaken for something else, which has no identifiable and controllable risk factors, and that can be treated. They are all living with Myasthenia Gravis, or “MG,” a rare disorder that causes severe muscular weakness.
Myasthenia Gravis – or “grave muscle weakness” – can affect people of any age, race or sex. No one knows what causes it, although it doesn’t appear to be hereditary. According to the Myasthenia Gravis Foundation of America (MGFA), there are no known factors that elevate one’s risk of contracting the disease. MG affects approximately 20 out of every 100,000 people, although because MG is often under-diagnosed or misdiagnosed the prevalence may be even higher.
Typically, MG affects facial muscles and other muscles throughout the body. It can impact a patient’s ability to see, speak, walk, smile, eat or even breathe. Diagnosing MG can be difficult, since its symptoms can appear similar to those of other disorders, including amyotrophic lateral sclerosis, or ALS. Common symptoms may include:
* Drooping eyelids.
* Blurred or double vision.
* Slurred speech.
* Difficulty chewing, swallowing or breathing.
* Weakness in the arms and legs.
* Chronic muscle fatigue.
Thomas Larsen, now 73, was working as a defense contractor in 2008 when he began experiencing many of these symptoms, including difficulty speaking, chewing, swallowing and holding his head up.
“I was diagnosed in May, and by my birthday on June 29, I couldn’t eat my birthday meal or blow out the candles on my cake,” Larsen recalls. “But after five months of treatment, I was able to fly across the country with my wife to celebrate our 36th wedding anniversary in Seattle.”
While there is no known cure, a variety of treatments work for most MG patients – though not all. Treatments include medication, intravenous immunoglobulin (IVIG) and surgery. Rest and a well-balanced diet can also help, according to MGFA.
When Tiffany Onorato’s symptoms first emerged in 2013, the 26-year-old professional made an appointment with an ophthalmologist to examine her drooping left eyelid. Her symptoms progressed into weakened facial muscles and, a few months later, she was diagnosed with MG. In less than a year, she underwent two hospital stays, surgery, chemotherapy and steroids. Today, a personal nurse comes to Onorato’s apartment to administer treatment every four weeks.
“Patients with MG maintain normal lives while having to battle for their health every single day,” Onorato says. “But those battles should be celebrated for creating such courageous and strong individuals.”
Another patient, Victor Mendevil, had already been living with symptoms of MG for three years by the time he was diagnosed at age 8. For Victor, MG turned his life upside down.
“I had to withdraw from playing the violin because it was too strenuous on my arm,” says Victor, now 16. “I couldn’t hold it up without feeling fatigued.”
However, braces, medication, surgery, treatments and physical therapy sessions have helped Victor cope with his disease. Since his diagnosis, Victor swapped his violin for a cello, which causes him less fatigue since he can play the instrument while sitting down.
“I want other people with MG to know that they aren’t their disease,” he says. “It’s important to accept MG into your life, but not to let it define you. MG is just a bump on the road.”
During Myasthenia Gravis Awareness Month in June – and throughout the year – MGFA works to raise awareness about the disease, its symptoms and how it’s treated, in addition to providing coping tactics for patients and their loved ones.
To learn more about Myasthenia Gravis and to find support, visit the Myasthenia Gravis Foundation’s website at www.myasthenia.org.