Emily Steffensmeier, of State College, has spent the majority of her adult life battling unrelenting fatigue, unrefreshing sleep, major brain fog and difficulty focusing, malaise and muscle aches. Those are just a few of her symptoms.
Steffensmeier, 42, is among some 70 million people worldwide living with various forms of chronic fatigue syndrome or Dysautonomia, a malfunctioning autonomic nervous system.
For 15 years, she said, she spent many of her waking hours bed-ridden and homebound. But in 2004, after having met with more than 100 doctors to try to find help, Steffensmeier consulted with Dr. Peter Rowe, director of Johns Hopkins Children’s Center’s chronic fatigue clinic, in Baltimore.
She said that with medication, he has helped her lead a fuller life, despite her illnesses.
“If you have chronic fatigue syndrome or Dysautonomia, your life has in some way been touched by Dr. Rowe’s work and his research,” Steffensmeier said.
For the past three years, Steffensmeier asked her friends and family donate to Rowe’s research in honor of her birthday. But this year, with October designated as Dysautonomia awareness month, she’s reaching out for support beyond her circle of friends.
She wants all of Centre County to help.
On Oct. 21, Steffensmeier is leading a 1-mile walk, run and roll, beginning at her home on the 200 block of McBath Street in State College, to benefit the Chronic Fatigue Syndrome and Dysautonomia Clinic at Johns Hopkins where Rowe practices.
The local event is being held in conjunction with a larger fundraiser at the Baltimore Running Festival to benefit the Johns Hopkins Children’s Center.
Raising money for Rowe’s research was a no-brainer for Steffensmeier.
“Dr. Rowe is a rare gem, whose humility, humor, compassion, intelligence and passion make him a model of what we need from more practitioners,” she said.
Steffensmeier is passionate about raising money for Rowe and his research.
As the team captain, Steffensmeier plans to lead a group of 20 people who have pledged to raise $250 each, with all the money going directly to the Chronic Fatigue Syndrome and Dysautonomia Clinic at Johns Hopkins.
“The donations have been an immense help in advancing our pace of generating new research findings and allowing us to better understand what is driving the symptoms,” Rowe said. “The research findings usually have very practical applications for changing our care of patients in the clinic, allowing me to dig in and constantly try to improve the level of care we provide.”
Rowe added that the influx of funds is especially important at a time when spending nationally for clinical research projects to help these chronic illnesses is down.
“I am very grateful to everyone who supports us,” Rowe said.
In addition to raising money, Steffensmeier hopes that this event will connect others in the community with people who share these illnesses, help people find an answer to why they are sick and make local practitioners aware of these illnesses.
If sharing my story or using my experience can in some way help make sure that we find answers, I will do it.
“If sharing my story or using my experience can in some way help make sure that we find answers, I will do it,” Steffensmeier said. “I may not see a healthy life, but some day others will.”
Royal blue is the official awareness color for Dysautonomia and everything from Steffensmeier’s hair to her nails and the bracelet she wears on her wrist will be royal blue to raise awareness.
She has found support in a group of local women who also have chronic fatigue syndrome and Dysautonomia. They text constantly, brunch together, meet for tea and find comfort in knowing they aren’t alone.
One of those women is Megan Shirk, who describes her body as unreliable.
“Not because I don’t want to be reliable but simply because I cannot predict when I will have a good day versus when I’ll have a day that I cannot stay awake (or) get out of bed,” Shirk said.
Shirk said having local support from people who are on a similar journey is especially important to her.
We all understand each other.
“Just knowing that you’re not alone, and that there is hope — we all understand each other and when we’re not able to stick to our plans and need to reschedule due to symptoms,” she said.
The trio of Steffensmeier, Shirk and Bethany Horner will all be walking on Oct. 21 as Rowe’s Research Runners.
Rowe played a role in bringing these women together. He not only sees Steffensmeier as a patient, but he also works with local doctors to help treat local patients with these illnesses.
Steffensmeier stressed that raising awareness and money must go together. She has big plans for the future of Rowe’s Research Runners, but for the inaugural year she is focused on bringing the community together.
“I started small for my birthdays, and I hope to continue to build on that in whatever ways my health will allow,” Steffensmeier said.
To find out more about the event visit the Rowe’s Research Runners Facebook page, www.facebook.com/events/129691704332109.
Megan Fleming is a Penn State journalism student.