When Robin D’Andrea woke up blind in her left eye just months after being diagnosed with multiple sclerosis, she thought she needed new contacts.
Her doctor had failed to warn her about temporary blindness or any of the other serious and often concerning ways the disease could affect her body.
“Nobody had ever told me that MS was a disease of the central nervous system, so everything could be affected,” she said at an event kicking off Multiple Sclerosis Awareness Month in Nassau County on March 5.
Now, 17 years post-diagnosis, D’Andrea is an active member of the Long Island chapter of the National Multiple Sclerosis Society. After her eyesight was restored, D’Andrea, 42, said she, “began to do a lot of research about what I was living with.”
“Once I felt comfortable that I knew what MS was, I decided to volunteer, become an advocate and help people living with MS to learn what it was,” she added.
Multiple sclerosis is a disease that attacks the central nervous system. Because there is no known gene or environmental factor that causes the disease, the list of multiple sclerosis symptoms often differs widely from person to person.
For D’Andrea, her list of symptoms is a long one.
“I’ve lost my eyesight quite a few times. I have extreme fatigue where I can’t get out of bed; it’s kind of like having the flu everyday. I get pain, numbness, tingling; my whole left side of my body right now is on fire, and it’s been like that for about a year.”
More than 2.3 million people are affected by MS worldwide, according to the National Multiple Sclerosis Society. The organization’s Long Island chapter reports about 42,000 people living with one of the four types of MS locally.
Don Barbieri, 54, of New Hyde Park, also suffers from multiple sclerosis. Over the years, the disease began to attack Barbieri’s body until he became confined to a power wheelchair for mobility.
"It affects different people in different ways and it’s unpredictable,” said Barbieri, who is now “fundamentally dependent” on others for the majority of his daily living.
“Over time, with each flare, disability accrues -- you don’t quite return back to what was normal -- and over time, there is a build up in this disability."
The disease manifests in four forms -- relapsing-remitting MS, secondary-progressive MS, primary-progressive MS and progressive-relapsing MS. Patients often progress through the different types of the disease over time, each with its own symptoms.
Barbieri was initially diagnosed with relapsing-remitting MS, characterized by symptoms that come and go and typically get better with treatment. But it progressed to secondary-progressive MS, he said.
Barbieri said medication is often helpful as “disease modifying therapies” that can reduce the number of flare ups and “stave off the cruel disability.”
But diagnosis can often be a major obstacle to early intervention and treatment because “there’s no one gene that you can point to that’s going to be related to you getting MS,” Barbieri said.
D’Andrea said it typically takes about two years for an official diagnosis as doctors troubleshoot various symptoms a person may be experiencing and rule out other possibilities.
“You have to have had at least two symptoms that lasted for more than a day,” she said. “There’s something called clinically isolated syndrome, where somebody will have an MS-type symptom, but they’ll have nothing else to back that up, so they do a ‘wait-and-see.’”
Barbieri said a lot of living with MS comes down to attitude.
“I’m lucky I have good family, good support around me, I have a caregiver who is a wonderful guy and, you know, you keep smiling and stay as happy as you can, and keep going, you know?”
While March is National Multiple Sclerosis Awareness month, D’Andrea said the MS society’s fundraising and awareness campaigns run throughout much of the year.
For D’Andrea, educating the public is one of the most important battles in fighting the “misunderstood” disease.
“Just educating people and getting them to realize, ‘Okay, this is what MS is’ ... is the most important part of awareness."