Just like any student, Stephanie Butler was excited to start working, in her case as a nurse, when she began experiencing numbness in her limbs and lost sensation below the waist. It was the first time the student nurse was going to administer anesthesia to a patient, three years ago, when after a week of being hospitalized she faced a multiple sclerosis (MS) diagnosis. Now she has decided to change her career path and help others who suffer from the same condition.
Having to deal with the chronic and disabling condition of the central nervous system, Stephanie Butler, who is now 28 years old, started questioning her future and if she would be able to walk down the aisle to get married, have children or work normally. Butler was a student at Rutgers, but she understood that becoming a nurse anesthetist was not her path anymore and changed her ambitions to become a family nurse practitioner.
The MS patient, who will receive her master’s degree and get married this month, has continued her studies at the Rutgers School of Nursing, but decided to dedicate her work to help other patients with MS through nursing and as a writer and advocate for MS patients. Butler has launched a blog called Justkeepsmyelin.com, referring to the protective sheath myelin that is located around the nerves that is damaged in MS patients.
The blog includes illustrated and easily understandable information on the disease, as well as stories about Butler’s struggle and own experience and has gained particular attention from the MS community. “There are not a lot of websites that take complex neurological information and break it down for patient education. I am all about teaching people more about their disease and how to manage it,” explained Butler in a press release.
The audience of Justkeepsmyelin.com has increased to around 10,000 users from 104 different countries, and it was recognized as one of the “Best Health” blogs of 2014 by the health information website HealthLine.com. After the wedding, Stephanie Butler and her husband-to-be are going to move to Richmond, Virginia, where he will begin a residency in anesthesiology at Virginia Commonwealth University, and she will look for a position as a family nurse practitioner.
Besides writing her blog, the MS patient has also become a member of the government relations committee on behalf of the National MS Society, as well as an advocate for MS on Capitol Hill, district activist leader and lobbyist with legislators. Her work is dedicated to raising funding for research on MS and influencing the legislation regarding the reimbursement of motorized wheelchairs for senior patients by Medicare insurance.
“I have big dreams and hopes,” said Butler, who reaffirmed that she is focused on working either independently or with other health care providers to increase patients’ education and help them manage their symptoms. “Certainly to know the cause of MS so that we can move toward a cure, but it’s really important to me to push for my patients and readers to be informed consumers of the health care system.”