Lauren Stiles thought she was going to be an environmental lawyer, become a partner at the firm by the age of 35, have a husband and darling children, and perhaps become a law professor later in life. Her plan was right on track, until it wasn’t. “Dysautonomia kicked my butt at age 31. I felt like I had lost my identity. It was depressing to think that all of the hard work I did to become a lawyer was a total waste, because I couldn’t practice anymore. I eventually realized that my identity and my role in life is not just to be a lawyer. My role, and what I feel most natural doing, is advocating for others.”
In January, 2010, Lauren had a sudden onset of a mystery illness. After she got a concussion snowboarding, she was unable to stand for more than 30 seconds without fainting. Lauren was misdiagnosed with everything from Addison’s disease, to neuroendocrine cancer, to being told it was all in her head.
Bed bound, Lauren lost 60lbs and her hair began to fall out from malnutrition. After 9 months, Lauren was diagnosed with a condition called POTS. After the POTS diagnosis, Lauren accumulated several other diagnoses. “Doctors gave me different diagnostic labels for the various ways dysautonomia impacts different organs or causes different symptoms – it’s all the same ball of wax.”
Lauren had never heard about dysautonomia before she became ill. As Lauren saw more doctors she began to realize that they were uninformed as well. “It was clear my doctors really didn’t know what to do, even though they were good doctors that wanted to help.”
It was only a few months after her POTS diagnosis that Lauren decided to start a blog about what she was experiencing. “From the very first POTSgrrl blog post I had it in mind that as a patient community we had to do more to educate the public, our fellow patients, and medical professionals.” To Lauren’s surprise, her blog attracted a lot of attention and she began to get emails from patients and physicians all over the world. “I realized that if doctors were desperate enough for information on POTS that they were contacting a patient blogger for help, we needed a professionally run organization with credible, up-to-date scientific information for patients and physicians.”
“If I had been the only POTS patient to be misdiagnosed and mistreated by medical professionals, I could have chalked it up to bad luck and moved on with my life, but I had joined online support groups and saw that I was not the only one.” Lauren believes that the misdiagnosis and mistreatment that plagues POTS patients can be eradicated through education, awareness, research, and patient empowerment.
Lauren put her experience with science education, non-profits, public relations, and law into the founding of Dysautonomia International. Since founding Dysautonomia International with fellow board members in 2012, she says she has “learned something new about dysautonomia almost every day, often from my fellow patients.”
Lauren has faced many challenges while running Dysautonomia International. Dysatuonomia International grew much quicker than expected and “it was hard keeping up with all of the emails, letters, donations that needed thank you letters and tax receipts, companies were reaching out to us, and more.” Lauren struggles with her health, but still manages to run a super successful non-profit with the help of an incredible board and many volunteers.
Dysautonomia International’s goals over the next 12 months are: continuing to fund medical research that will help POTS patients, expanding their physician education programs, including workshops at medical schools and hospitals, expanding the reach of Dysautonomia Awareness Month, continuing to empower patients to raise awareness about dysautonomia and it’s various forms, growing and expanding their support network so that patients can communicate better with each other, hosting the 2016 conference, updating the website, and organizing the first ever POTS research symposium, which will be held in 2017.
Lauren wants everyone to know that no matter what situation you are in, if you are affected by dysautonomia, you should become involved with Dysautonomia International. “Working together, we can make a big difference!”