Fourteen-year-old Alexis (Lexi) Stanley of Plattsmouth is a typical teenager who loves athletic competitions, spending time outdoors and being with her friends and family.
Lexi, however, is different from her classmates because she suffers from Myasthenia Gravis (MG), grave muscle weakness.
According to Lexi’s mother, Amy Stanley, MG is an autoimmune disease similar to Multiple Sclerosis yet different.
“MG causes bodies to make antibodies that work against the nerves and muscles,” her father, Steven Stanley, said. “It is not a contagious disease but one in 20,000 are diagnosed with it.”
Lexi was diagnosed with MG in October 2013. She is on medication, which helps with the symptoms, but there is no cure.
“Eventually, they become resistant to the medication and then they have to do something else,” Amy said.
MG is a deadly disease. “Some who pass from MG die from MG itself, and some die from the effects of the treatments used to attempt to control the disease,” according to “MG in the Simplest of Terms.”
Steven said Lexi’s age limits the use of some medications used for adults with MG, be cause they are too dangerous for a young person.
“They call MG a snowflake disease, because every person reacts differently,” Amy explained. “It’s rare in a 14 year old. It usually hits 20-year-old women or men over 50.”
According to “MG in the Simplest of Terms,” “all treatments currently available come with serious, and sometimes, life-threatening side effects.”
Sometimes MG victims will go into periods of remission that may last for years. MG sufferers, however, may come out of remission if certain events trigger it. So far, medical experts cannot explain why either condition happens.
Episodes are frequently triggered by illness, heat, over-exertion and stress.
“It is very important that individuals with MG listen to their bodies, not exert themself too much and eliminate as much stress as humanly possible,” information about MG reads. “It is extremely important that people with MG get plenty of rest – not just at night but throughout the day and anytime they feel their symptoms flaring.”
Symptoms may include droopy eyelids, trouble swallowing or breathing, muscle weakness and double vision.
“Resting and not moving any muscles other than those required for breathing helps lower the levels of bad antibodies in the bloodstream,” the information reads.
To help alleviate the symptoms, Lexi underwent a thymectomy at University of Nebraska Medical Center last December.
A thymectomy is an operation to remove the thymus. It usually results in remission of Myasthenia Gravis by reducing the antibodies attacking the muscles. It has been successful in some patients with the help of medication including steroids.
While patients usually notice improvement within six months of the operation, Lexi hasn’t noticed much change yet.
“Forty percent who have MG go into remission. Eighty percent experience a benefit from the surgery,” Steven said.
On some days, Lexi experiences no noticeable symptoms.
“But then there are bad days where she can’t walk up steps,” Amy said.
The most difficult aspect of the disease for Lexi is having to give up sports and other activities.
Because she appears healthy, friends have trouble understanding why she can’t keep up the pace she used to. They don’t believe she is sick because she looks healthy, Steven explained.
“They see her on her good days,” Steven said. “One moment she might be walking fine and the next, she could fall down.”
Although Lexi hasn’t missed many school days due to the disease, some days are definitely harder than others.
“Sometimes when we take notes I’m a little behind,” Lexi said.
Although the prognosis for MG patients has improved due to the use of a ventilator on days they are too weak to breathe, it is crucial that they get help quickly when they experience an attack.
The Stanleys are doing their best to educate people about MG. “We contacted the Myasthenia Gravis Association to try to get a fund-raiser walk. We went to Minneapolis for a walk,” Steven said.
Physicians at UNMC are starting to more patients with MG, so the Stanleys are hopeful word will spread.
To help the family pay for the ongoing medical bills for Lexi’s treatments, a Golf Tournament, “Chipping in for MG” is scheduled 1 p.m. Aug. 2 at Bay Hills Golf Course.
“The infusions that help Lexi run $10,000 to $15,000 each,” Amy said.
After the tourney ends, people are encouraged to attend the spaghetti feed. All funds from these two events will be deposited in the Alexis Stanley Benefit fund at SAC Federal Credit Union.
Monetary donations may be made directly to SAC. Retail donations will be auctioned or raffled at the spaghetti feed following the tourney.
For more information or a mailing address, call Steve Stanley at402.679.4278.