It’s hard to believe that it’s only been a year since our chapter became connected with Stephanie Butler.
Patti Pasquino, Director of Community Education for the New Jersey Metro Chapter, first met Stephanie in March 2014, while attending the National Multiple Sclerosis Society’s Public Policy Conference in Washington DC.
“Stephanie had taken the initiative to register for the conference online and attend with her mom Cathy,” said Patti. “They were eager to learn about the National MS Society’s advocacy efforts.”
Both Stephanie and her mom are living with multiple sclerosis and were excited to learn about the National MS Society’s advocacy efforts.
Stephanie was diagnosed with MS in 2013. Stephanie had recently started her second semester for her graduate degree in Nurse Anesthesia (an elite program that accepts only 20 people each year), when she lost sensation in her limbs.
“I was running and my right foot fell asleep, only it never woke up again. Then, gradually, over the next couple of weeks, both legs and my right arm also went numb,” Stephanie said.
Stephanie ignored her symptoms, until an incident when she was working as an Intensive Unit Care nurse made her realize she needed help. She checked into the ER and spent the next seven days in the hospital as a patient.
“IV steroids, MRIs, spinal taps, blood work, a different diagnosis every day,” Stephanie explained. “On January 25, 2013, I was diagnosed with MS. It was more of a relief than anything; I was emotionally tired of not knowing what was happening.”
Quickly after her diagnosis of relapsing-remitting multiple sclerosis (RRMS), Stephanie decided to not let her MS get in the way of her career goals. She chose to become certified as an MS Clinical Specialist and took a job in her neurologist’s office. Stephanie also continues to work toward her Nurse Practitioner degree.
“It is my dream to work with MS patients, to extend an empathetic hand and make a difference to such an amazing group of people,” she said.
Stephanie realized that her first-hand experience with MS, combined with her nursing background, allowed her to really connect with people. She jumped into an advocacy role at the New Jersey Metro Chapter, becoming a member of our first statewide Government Relations Committee, which advocates for the needs of people affected by MS. She also met with several members of Congress, as well as Senator Robert Menendez, sharing her personal diagnosis story each time.
Stephanie also started blogging, using Just Keep S’Mylein as a forum to share her story and experiences, answer questions about MS, as well as provide people living with MS resources and knowledge about the disease.
People took notice. Just Keep S’Mylein was recently voted one of the Best Health Blogs of 2014. Her blog also caught the eye of coordinators for TEDx Talks. She was asked to give a Talk in Virginia this March.
Stephanie will be speaking about her journey with MS and will also touch on her advocacy work. For the most part, her TEDx Talk audience will likely comprise of people who don’t have a lot of experience with MS. And that’s exactly how Stephanie wants it.
“I want to inspire those who have little knowledge of the disease and, at the same time, want to inspire those who do,” she said.
Stephanie begins her Talk discussing her personal experiences with MS, her diagnosis story and her new career path. Her Talk opens and closes with the same message: Life is challenging. And this is not always a bad thing.
“When something happens in your life, the best thing to do for yourself is to fulfill your purpose,” said Stephanie. “My purpose is to spread awareness.”
“I want to work toward a day when a 25-year-old will be diagnosed with MS and told there’s a cure,” she ends.
For more information on Stephanie or to follow her journey, visit, http://justkeepsmyelin.com/.