Given the life challenges that Marisol Milanes faced, it's impossible not to marvel at her indefatigable joy. The charismatic 48-year-old businesswoman from Panama recalls how her life was different from the start:
"As a little girl, I always had health problems. They were so frequent that my mother decided to eliminate my extra curricular activities in school. I felt queasy, my vision was blurred and my legs were constantly numb."
By age 17, the discomfort was intense. But her worst crisis came after she enrolled in college to pursue dentistry. "I had high fevers, leg paralysis, loss of vision and difficulty with speech," she says. "I thought, however, that these symptoms were related to stress and the academic demands."
Despite these limitations, she continued her training and tried to live a normal life. After graduation, at age 24, she married her college sweetheart. Three years later, she gave birth to their first son after a difficult pregnancy. Two years later, their second child was born with an umbilical hernia and had to undergo surgery.
The resultant tension was terrible, recalls Milanes. "I had another crisis but this time the consequences were grave and long-lasting. My face was distorted and I lost mobility in my left arm and right leg. Finally, after a battery of exams, I was diagnosed in October 1993 with multiple sclerosis."
After having gone more than 20 years without a diagnosis, accepting the fact she had multiple sclerosis (MS) was devastating. Milanes felt as if her world was falling apart; she became depressed and quit her career as a dentist.
It was through a cousin that she first heard about a new Mayo Clinic MS clinical trial. "My husband told me he was taking me to Mayo even if we had to sell our house," she recalls with emotion.
She immediately contacted Mayo's international appointment office in Jacksonville, Florida, and will never forget what office manager Paz Fernee told her: "Tomorrow, I will call you to give you paz (peace)."
She heard from Fernee the next morning and obtained a consult in February 1994, four months after she was first diagnosed in Panama.
Milanes and her husband flew to Jacksonville, where neurologist Dr. Elizabeth Shuster and a team of physicians conducted a thorough examination of her brain. "After reading the MRI and the laboratory results, we were able to confirm the diagnosis," says Dr. Shuster, who to this day remains a close friend of the Milanes family. "She is my angelito," says Milanes.
While at Mayo Clinic, Milanes enrolled in the clinical trial and was in a lottery to receive the first FDA-approved drug treatment for MS — interferon beta 1b. But she was No. 81,369 on the list and would have to wait more than a year. Frustrated, the family returned to Panama.
But one year earlier than expected, Milanes received notice that her medication was ready. She immediately returned to Jacksonville to start her treatment. "Since then my life has changed," she says with a smile on her face. "I feel cured today although my disease is degenerative. I have lesions in both cerebral hemispheres and the spinal cord, but these are asymptomatic. I continue to pray that someday I will be able to meet my great grandchildren — even though I'm yet to have grandchildren."