In the fall of 2002, I woke up in my Christopher Newport University dorm with blinding pain in my temples. The pain was so acute that it caused partial vision loss. I visited four doctors within a week to determine why I had excruciating headaches and had to hold my temples to look out of my periphery.
My parents joined me an hour from home for a series of tests, including an MRI. While we waited days for the results, I was alone at school navigating coursework and debilitating discomfort. Frightened and anxious, I braced myself for the diagnosis. Short-term: optical neuritis. Long-term: multiple sclerosis.
I was 20 years old. No cure. Possibly a lifetime disability.
In simple terms, MS is a chronic and unpredictable disease that affects the central nervous system. It can cause a wide range of symptoms, including fatigue, numbness or tingling, muscle weakness, vision problems, and difficulty with coordination and balance.
From personal experience, it can also cause a wide range of fears before and after diagnosis.
After hearing the news, my dreams and inspirations of building a family and career were replaced with visions of disability and mobility challenges. But shortly afterward, my vision returned, and I started a treatment program with a local neurologist. I’m grateful that my nightmares never came true. Twenty years after my diagnosis, I’m a wife, mom to two young boys, a successful public relations professional, and recently completed a 10k.
I’m proof that early detection and treatment are keys to living a full and fantastic life, even with MS.
Today, I am committed to raising awareness about MS and helping to find a cure. It’s important that people know the warning signs of MS and understand that a diagnosis doesn’t define them. I’m privileged that I can bridge my personal and professional passions as a public health communicator. I’m committed to reducing health disparities to raise awareness about a disease that’s affected my life.
Here are some common symptoms you should know about MS: fatigue, numbness and tingling, loss of balance, stiffness or spasms, tremors, bladder problems, bowel troubles, and vision issues. If you’re experiencing any of these symptoms, talk to a doctor. If you don’t have insurance, please seek out a free clinic or a federally qualified health center.
Unfortunately, some people don’t have access to health resources or ignore MS warning signs, especially in rural communities. My colleagues and I at the Institute for Public Health Innovation, a nonprofit that develops multi-sector partnerships and innovative solutions to improve the public’s health, are working to change that.
Our three-year project funded by the Bristol Myers Squibb Foundation is improving access to diagnostic and support resources for rural populations with MS in Virginia, West Virginia, Maryland, and North Carolina. This work includes educating and training non-specialty providers about MS symptoms and increasing public awareness about MS and its treatment options. We’re meeting people where they are as we participate in local community events. We’re also partnering with established programs like mobile health units.
According to research, people with MS are at a higher risk of developing mental health symptoms like depression and anxiety and face higher unemployment rates. But when people are diagnosed early, they can take medications to slow the progression and manage symptoms. In addition, people living with MS report higher satisfaction when they are treated by a specialist familiar with MS and are more likely to be offered a disease-modifying therapist.
Our efforts are helping more people in rural communities understand MS and access treatment. As awareness spreads, I’m hopeful more individuals – no matter where they live – will advocate for themselves, get screened, and seek treatment.
Taya Jarman, APR is the communications director at IPHI. She can be reached at [email protected].
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