Imagine being unable to walk. This is the life of Shands Jacksonville patient Merilyn Jonaitis. She suffers from a rare form of neuropathy that cripples her every five to six weeks.
Neuropathy is a little known nerve disease that afflicts hundreds of thousands of Floridians and more than 20 million Americans. This progressive disease primarily affects the hands and feet, causing tingling, numbness, weakness and pain. The simplest tasks can become difficult, as is the case for Merilyn.
Every five to six weeks, she arrives at Shands Jacksonville’s infusion center for a treatment called IVIG, or intravenous immunoglobulin. “When I get to the hospital, I can no longer walk on my own and have to use the assistance of my husband or hold onto the backs of chairs for support,” said Merilyn, describing the debilitating nature of the disease.
The former critical care nurse had to give up her career ten years ago because of the progression of the disease. At the time, doctors in Massachusetts were unaware of what was causing Merilyn’s pain. One doctor thought she might have cancer and administered chemotherapy. When none of the treatments worked, Merilyn insisted that physicians dig deeper to find the cause.
Months later, a neurologist diagnosed her with neuropathy, and after many different types of treatments, IVIG was found to be the miracle she had been looking for. “It works like magic. I’m a completely different person after the two-day treatment,” said Merilyn.
She is convinced she would be in a wheelchair or dead if it were not for IVIG and neuropathy centers like the one at Shands Jacksonville. Shands is home to one of only eight neuropathy centers in the United States offering comprehensive diagnosis, treatment, support and education.
Merilyn’s next IVIG treatment is scheduled for June 30 at 8 a.m. Media is invited to attend or can book an interview with Merilyn for another date and time. Her physician, Alan Berger, M.D., chair of the Department of Neurology at the University of Florida College of Medicine-Jacksonville, is also available for interviews. Contact Chris Turner, Media Relations Coordinator at 244-3267 or via e-mail at chris.turner@jax.ufl.edu for more information.