Meet Deanna

As a newlywed, the last thing Deanna imagined was spending 18 months on bed rest following a routine surgery. However, that became a reality when Deanna experienced complications after a surgery to remove her tonsils that led to extreme weakness in her muscles, including those that controlled her speech. Concerned that her body continued to weaken, Deanna began searching for answers.

After countless appointments and costly tests, the breakthrough came unexpectedly when a doctor placed an ice pack on Deanna’s face. While not a definitive test, many healthcare providers try the ice pack test to evaluate drooping of the upper eyelid (ptosis), which is a common symptom of generalized myasthenia gravis (gMG), a rare autoimmune disorder characterized by reduced muscle function and severe muscle weakness.^1,2

The cold temperature can momentarily improve muscle strength and reduce the droop, which signals the possibility of gMG.³ When Deanna’s eyelids responded to the ice pack test, doctors were quick to order a blood test that confirmed Deanna’s diagnosis of gMG. She never dreamed simple diagnostic tests would clarify her current crisis and also explain the confusing symptoms she had experienced her whole life.

What was once simple—brushing her teeth, styling her hair, doing her makeup, and putting on her shoes— sometimes became a challenge. Like many gMG patients, Deanna described her experience as a pendulum, as her symptoms differed day-to-day and could fluctuate dramatically over the course of a few hours and could become life-threatening. She didn’t feel comfortable being left alone, unsure whether she might need urgent help.

Today, Deanna’s challenges extend beyond her everyday routine. Travel, once a source of excitement and spontaneity, now requires careful planning in case her symptoms escalate. “Everywhere that I go, I know where the next hospital is,” she shares. “Every city that I fly to, I know if there is a neuromuscular doctor in that area.”

With the continued support of her care team, Deanna is a proud, active advocate for the gMG community and embraces the snowflake as a symbol of gMG. She creatively amplifies the message that each person’s experience with gMG is as unique as a snowflake.