Channel MS awareness toward advocacy, action

In an effort to draw greater awareness to a debilitating neurological disorder, the centerpiece story on Page 1 of Monday’s Vindicator focused squarely on four indomitable Mahoning County residents. In it, they shared common experiences of pain and struggle mixed with resilience and hope as survivors of multiple sclerosis.

There was Nick Giangiordano, 34, of New Middletown, whose tour of duty in Iraq was cut short after his body went numb from the chest down. There was Stacey Shells, 45, of Canfield whose temporary loss of sight led to a seven-year odyssey toward a diagnosis of MS. There was Kathy Villella, 65, whose MS discovery in 2013 led to her early retirement of the teaching job she so deeply loved and to an eventual loss of much of her mobility. And there was Nikki Villella, 35, who once diagnosed with her mother’s disorder feared irrationally that no one would ever like her any more.

A common thread woven through all of their emotional stories is the message that those afflicted with the disorder should not give up on hope and on living life to its fullest. That message deserves to be amplified today as the United States marks Multiple Sclerosis Awareness Week through Saturday.

WHAT IS MULTIPLE SCLEROSIS?

MS is the most common autoimmune disorder affecting the central nervous system. In 2013, about 2.3 million people were affected by MS, and about 20,000 people died from its complications, up from 12,000 in 1990.

MS was first described in 1868 by Jean-Martin Charcot, a French professor of anatomical pathology. The name multiple sclerosis refers to the multiple scars or sclerae – better known as plaques or lesions – that develop on and damage the white matter of the brain and spinal cord, according to the U.S. National Institutes of Health.

The most common MS symptom is fatigue, which occurs in about 80 percent of cases and ranks as the most prominent symptom in a person who otherwise has minimal limitations to their daily activities.

Other common symptoms include difficulties with gait and walking, vision problems, involuntary muscle spasms in one’s limbs, bladder difficulties, dizziness and vertigo.

Sadly, despite widening knowledge of its symptoms, a concrete cause to the neurological disorder remains elusive. So, too, does a cure.

Those enigmas therefore make this MS Awareness Week particularly valuable. As the MS Society urges, this week is a time to recognize progress made in combating the disease and to inspire everyone to take action toward achieving a world that is free of MS.

To be sure, progress has been achieved. New therapies more efficiently treat and manage MS, and more potential MS therapies are in development today than at any other time in history. Today MS is more quickly diagnosed, enabling early and sustained therapy to slow disease activity.

Clearly, however, much more work remains. That monumental task remains predicated on channeling growing awareness into robust advocacy and productive action. The national society continuously seeks advocates to urge state and federal policymakers to advance issues of import to MS patients, including increased funding for research, heightened access to affordable and effective treatments and beefed-up policies on home modifications to improve accessibility and safety for those living with MS.

To help finance those and other initiatives, the national society has contributed hundreds of millions of dollars raised from concerned and empathetic allies. Contributions to the society and participation in its fundraising events therefore can help speed progress toward a cure.

Toward that end, mark your calendars now for May 6. On that Saturday at Canfield Fairgrounds, hundreds of volunteers will take part in the Walk MS: Mahoning Valley, a principal fundraising activity for the local MS Society affiliate. Last year, nearly 400 people raised more than $59,000 in that one-day event. With ample preparation and promotion, we’re confident those numbers easily can be topped this spring. We’re also confident that with continued vigilance and a growing army of MS warriors, Nick, Stacey, Kathy, Nikki and millions of other MS survivors like them will find successful paths to more healthy, long – lasting and productive lives.