Samantha Guerry was diagnosed with multiple sclerosis in 1992, when she was 26-years-old and newly married.
While 1992 was a productive year for technology (the answering machine was all the rage), the internet was only beginning to transition from a military tool to the necessary companion we all know it to be today.
There was no Google to search for answers, and so Samantha spent her time seeking answers the old fashioned way. Samantha shares,
“The Internet was not available in 1992, so I did my research by going to the bookstore and reading everything I could get my hands on. However, I wasn’t starting from scratch. My father had been diagnosed with MS seven years earlier—an experience that both informed and complicated my search for answers. Learning to separate my experience, diagnosis, and needs from his was another dimension of my challenge.”
It was this journey that led Samantha to found TurnFirst.org, an online destination for those newly diagnosed with MS to “have a safe and constructive place to turn to when they have questions, need support, and want to plan an approach for themselves that will help them follow their dreams.”
Typing “multiple sclerosis” into Google returns about 21,400,000 results in 0.48 seconds. As Samantha notes, this is simply too much information to wade through. There’s no way to filter out “what’s true, what’s healthy, and what’s not.” In addition, it’s nearly impossible to absorb so much information, especially so early on in the diagnosis.
As TurnFirst.org grew, doctors and neurologists started to send their patients to the website to explore and come back with questions. The site provides a foundation that is specific to those who are newly diagnosed, as the needs of someone who has had MS for 20 years can be vastly different from those who has just been given the news.
Watch the video above to learn more about Samantha Guerry and TurnFirst.org.
What was your experience seeking out information following your MS diagnosis?
Share your experience in the comments section below or log in to MyCounterpane.com/MS to share your story with the community. We can’t wait to hear from you!
OUTSTANDING SESSION LADIES!
I continue to be impressed with the quality of content on your site Kate and the powerful discussion dialog amongst the persons being impacted by our collectively insidious disease.
Oh, Margaret. Yes! I will never forget when I first began Sanctuary over twenty years ago, you handed me a check. You were the first person who supported this venture with your financial gifts. You believed a Pryiretebsan could be a monk.