Emily Shirley: Taking a Stand against MS

DISCOVERING MS

One day in October of 2016, Emily woke up with double vision and immediately knew something was not right. Naturally, she visited her eye doctor, only to be told she would have to see a neurologist. After an MRI, she learned that she had over 20 lesions in her brain caused by an auto-immune disease called Multiple Sclerosis or MS.

Multiple sclerosis affects the nerve cells of the brain and spinal cord which typically leads to symptoms such as numbness, impairment of speech, muscular coordination, blurred vision, and severe fatigue. After Emily’s diagnosis, it took four months to get the medication she needed due to her insurance company refusing to provide the recommended medication because of the high costs.

That sparked a passion for Emily to “do things right the first time; especially if it improves someone’s quality of life.”

TAKING ACTION

Gandhi said, “Be the change you wish to see in the world.” Emily Shirley is doing just that. She is the Systems Services intern for VSU’s Division of Information Technology; but on February 12 and 13, 2019, she dedicated her school and workday to attend the MS State Action Day in Tallahassee, Florida. The purpose of those days was to see about getting House Bill 559 and Senate Bill 650 passed. These two Florida bills will essentially streamline the process of getting medication and make it harder for insurance companies to require patients to take less expensive and less effective medication prior to receiving the actual medication recommended by their doctor. For diseases like MS, less effective medication could irreversibly impact someone’s health. Emily is seeking change in legislation from Florida because that is where she receives treatment.

THE FUTURE IS NOW

Emily said that this was her first experience working with the National MS Society. She quoted that it was “really cool to be involved in that community and it was nice to be around people that understood.” October 2019 will be three years since Emily’s diagnosis. She is learning more each day and her drive for justice is served for those who have MS, cancer and other severe illnesses.

Learn more about MS and State Action Days

Thank you, Emily, for bringing awareness to the Division of IT, legislators and beyond!