By Patra Taylor
In 2000 Ainsley Glenn was living her dream. Beautiful and brilliant, she had a post-graduate degree in cardiac arrhythmias and an excellent career with a medical device company in Washington, D.C. Then a serious automobile accident stopped her in her tracks.
“I was hit by a driver going 80 miles per hour,” explains Ms. Glenn, a Charleston native. “The accident ruptured my lumbar spine.”
After a long and recovery, things seemed to be mostly normal. Ms. Glenn returned to work, but was often plagued by excruciating pain. After six surgeries and the removal of a bone chip that had dislodged in her back, she hoped that her long ordeal was over. Instead, it was only just beginning.
“After the bone chip was removed, I started to recover,” continues Ms. Glenn. “I would have periods of time when I was well and then I would have periods of time when I was in bed, unable to move. Then I would pop up and be fine again.”
Three years ago, Ms. Glenn’s body began to break down due to a number of underlying issues that lingered in the aftermath of the accident. She began to suffer from an array of symptoms that left her with continuous pain. Her doctors were puzzled while she was often exhausted and frustrated by what appeared to be a mysterious illness.
“It became a constant battle of defending myself,” notes Ms. Glenn. “I kept saying ‘I’m sick. There’s something wrong.’ I developed a myriad of symptom including migraine headaches, abdominal pain and pain all over. My friends and family were skeptical.”
Then in March of 2012, Ms. Glenn’s mysterious ailment manifested as severe abdominal swelling. All skepticism quickly faded as her father, James A. Glenn, M.D., a cardiologist and E. Benjamin Clyburn, M.D., an internist, began pouring over her 12 years of medical records. Finally a diagnosis: Dysautonomia.
Glenn soon learned that “dysautonomia” refers to a group of complex conditions caused by a malfunction of the autonomic nervous system that, in her case, related to the nerve damage caused by her 2000 automobile accident. Because the autonomic nervous system regulates all of the unconscious functions of the body including the cardiovascular system, gastrointestinal system, metabolic system and endocrine system, a malfunction can cause debilitating symptoms.
“Individuals suffering from dysautonomia experience a collapse of their involuntary nervous system,” explains Ms. Glenn, who suffers from POTS — postural orthostatic tachycardia syndrome — as a result of dysautonomia. “Instead of regulating the vital functions of the nervous system, the body essentially turns on itself. Racing heart, sweaty palms, dry mouth, upset stomach and shakiness are just some of the conditions from which victims of dysautonomia suffer on an unceasing basis.”
A diagnosis without a cure in sight was a tough pill to swallow for Ms. Glenn. But instead of allowing the diagnosis to overwhelm her, this strong, faith-filled young lady saw an opportunity to fight back by attacking her illness as hard as it had attached her. With the unconditional support of her family and friends, Ms. Glenn established a Facebook page to spread awareness about dysautonomia and to serve as a forum for others who may be suffering in silence from this condition.
“The response has been overwhelming,” states Ms. Glenn regarding the Facebook page she started in July 2014. “I was thinking there might be a few people I could help, but this has turned into a phenomenon, with 11,000 ‘likes’ and counting. People from around the world are visiting the page, including physicians. We are blown away at how fast it has grown.”
Glenn says that the page is a unique use of social media. “Our Facebook page started as a supportive community to disseminate information and have patients come together to voice their problems,” states Ms. Glenn. “Any medical information we put up on Facebook has to be cited and resourced. That’s probably the driving force behind why people are staying on our page. They come to the page to ask questions, which often result in incredible conversations among people who have this condition. We are now collecting some of these conversations and passing them along to researchers.”
With the rapid growth of her Facebook page, Ms. Glenn quickly realized the tremendous need to spread the word, both locally and nationally, about dysautonomia. That’s when 12 of her strongest supporters volunteered to form the Dysautonomia Advocacy Foundation under her guidance. The DAF board is comprised of the following: Sarah Glenn Smith, president; Richard Geer, vice president; Bratton Riley, treasurer; Hayden McIntosh Geer, secretary; Lydia Applegate; Acey Boulware; Thomas Boulware; Mary Hart Craig; Lori Christopher Glenn; John Liberatos; Randolph Pritchard; and David K. Shimp.
“As a foundation we are actually providing a place for people to talk, collecting information that could be possibly used for research and then providing cited resourced information,” adds Ms. Glenn. “It has been beyond fabulous for me to have something like this take off. It’s difficult for me physically because it takes a lot of time and energy. But I feel so blessed to have my wonderful family and friends who have decided to dedicate their time to be on the board. Together, I think we’re going to make a real difference — maybe help find a cure — for those suffering from dysautonomia.”
To learn more about the causes and the numerous manifestations of dysautonomia, Ms. Glenn invites readers to visit the foundation’s Facebook page at facebook.com/DysautonomiaFoundtation or check out the webpage at dysautonomiafoundation.org. To show your ongoing support for this cause, please join the “Tie One On” promotion by purchasing one of three specially designed rope bracelets, which are available at etsy.com, keyword “dysautonomia.”