Many voices say: “Here’s why I joined MyLymeData”
By Tiffany Salmon
We launched MyLymeData over a year ago, providing an effective way for patients to pool diagnosis and treatment experiences. This “big data” project gathers information about the lived experience of Lyme patients straight from the horse’s mouth. What symptoms did they have? What treatments did they try? What helped–and what didn’t?
MyLymeData asks the questions that health officials routinely ask about other illnesses–but have never asked about Lyme disease in such a comprehensive way.
The goal is to let this data lead researchers in the most promising direction—towards a cure for Lyme disease. (You have to have a clear picture of what you’re dealing with in order to fix it, right?)
The response from the Lyme community has been encouraging. More than 7300 people have signed up so far, putting us in the top 10% of patient registries in the nation.
Over the months that MyLymeData has been ongoing, we have published a number of blogs from individual patients about why they take part in this project. Here’s a look at some of them.
“MyLymeData… is a means for patients like me to wring some benefit out of our horrific Lyme experiences. By sharing information about our symptoms and treatment—including what worked and what didn’t—we can help point the way for medical researchers who are searching for a cure for Lyme.”
From Southern California
“I signed up for MyLymeData because I’m committed to Lyme patients being diagnosed and treated properly. By adding your Lyme data to MyLymeData, you can help bring about the day when no 13-year-old with Lyme will ever again feel compelled to draw up a last will and testament.”
Lives in Chester County, Pennsylvania
“MyLymeData can give us new power over a disease that has brought many of us to our knees. Information on MyLymeData is confidential. You’ll learn you’re not alone. You’ll help yourself and you’ll help others. You’ll make what’s invisible, visible so that it can be studied, understood and cured.”
From Southern California
“I’ve learned a lot about what works for me through these years of treatment. And I don’t want all this ‘education’ to go to waste. That’s why I’ve signed up for MyLymeData. It’s a way for Lyme patients to pool their experiences, so researchers can look for patterns—an important step to finding effective testing and treatment. And eventually a cure!”
Ruben Lee Sims
Lives in Southern California
“This important project gives Lyme patients a chance to make a real difference. By pooling our information, we can help build up the knowledge base of how real people experience Lyme disease. This will help direct researchers in a more useful direction. No one in the military—or anybody else in this country—should have to suffer so long without proper medical care.”
Works in Human Resources for the State of Delaware, teaches at Wesley College, and is a member of Delaware’s Lyme Disease Prevention Task Force.
“I’m sharing my story in hopes that other people will not have to repeat my experiences. That’s also why I’ve signed up for MyLymeData. The patient-powered research project pools information from many people with Lyme—about their symptoms and what treatments have helped or not helped. That kind of information has never been collected from Lyme patients on a large scale before.”
When Rachel Leland was wheelchair-bound (often bed-bound) from Lyme disease as a young teenager, she learned to edit videos on her computer. This is a video blog about why she thinks MyLymeData is so important. Click below to view Rachel’s story.
Author and filmmaker
“I joined MyLymeData on behalf of my daughter, because I know that the more we connect the dots, the more we come together as a community and share our information, the closer we get to better treatment options.”
Singer and Songwriter
“The more information we have, the better. Being able to catalogue symptoms in the community versus what’s being said by some medical professional is important. It’s essential to know what’s happening so that we can know how to make it better. If it had only taken me one doctor, and all my treatments had been covered, that would have saved me so much time and frustration. This is why research is important.”
Father, husband, nutritional health coach, Permaculture Farm business owner, and adjunct instructor at Keystone College
As an individual who has horrendously suffered from Lyme disease, I can honestly say that education and information are the two biggest tools that we have available in this fight. MyLymeData is a cutting edge tool that will help provide information for those who suffer. As someone who lives in Pennsylvania, Lyme disease is a serious problem and raising awareness is crucial.”
MyLymeData is using technological advances to give patients a voice and easily include them in the discussions that impact them. Our goal for MyLymeData is 10,000 participants. With strength in numbers, we can finally overturn the research that has not helped but has only harmed us. When 10,000 patients speak, researchers will have no choice but to listen. If you have not joined MyLymeData, we encourage you to join today.
We held our first patient education conference “MyLymeData 2017: Overcoming Lyme Disease”, which took place in San Ramon, CA, on April 8. It provided an update of latest MyLymeData results, along with presentations from four Lyme-treating physicians.