Twenty years ago, when my 13-year-old daughter fell desperately ill with Lyme disease and co-infections, I felt lost. Local doctors denied she could have Lyme disease, claiming “no Lyme around here!”

With few relevant books and little material online, I was stranded in an information desert with no apparent way out. However, through LymeDisease.org, my family found much-needed advice on how to proceed and a doctor who knew how to help us. It made all the difference.

Now, thanks to your support, LymeDisease.org is the largest source of news and information for patients with Lyme disease and conducts the largest patient-led research project in Lyme disease through its MyLymeData patient registry. We understand that Lyme patients just want to get well—and we provide the essential information they need to achieve that.

MyLymeData has enrolled over 18,000 participants, and published seven peer-reviewed studies that help build a knowledge base from the patients’ perspective to inform researchers, patients, and public policy.

MyLymeData principal investigator Lorraine Johnson has presented findings at prestigious events at the National Academies of Science, Engineering, and Medicine and the American Association for the Advancement of Science, as well as at academic and professional meetings.

The patient perspective is crucial

We see the patient perspective beginning to be recognized as crucial in Lyme research. Our representation of the Lyme community in discussions with Congress, health officials, policymakers, researchers, and the media are vital steps in driving the changes our community needs.

Our extensive website, newsletters, Lyme Times journal, and online support group provide patients with the information they need to get well. As one patient described our impact on social media:

“If you or someone you know has Lyme disease, I encourage you to visit LymeDisease.org. This wonderful site offers vetted medical information, cutting-edge articles, informative books, personal stories, and a directory of Lyme-literate doctors in the USA.

“It empowers Lyme disease sufferers with tools to fight this under-researched, cruel disease. If you, your child, your family, or friends are suffering, it offers an opportunity to learn more and directs you toward better understanding, health, and hope.”

We’ve made progress, but challenges remain. Lyme denialism, a shortage of knowledgeable treating doctors, and the refusal of many health insurers to cover Lyme-related care continue to burden the community. Your contributions help us keep fighting for what Lyme patients need.

We are grateful for the generosity of donors who share this vision of the need for change in Lyme disease. But to continue this critical work, we need your help more than ever. Can we count on your support this year?

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TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of Finding Resilience: A Teen’s Journey Through Lyme Disease and of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.