34 years of fighting for what Lyme patients need most
Since 1989, Lymedisease.org has fought for what Lyme patients need. Better medical care. Better research. More knowledgeable doctors. And the power that comes from joining forces to bring about change.
Your donations help us continue this important work.
With support from people like you, we provide needed information to individuals and the public, and we represent patient interests nationally. Through MyLymeData, our patient-led research project, we build a knowledge base that advances scientific studies of Lyme disease and informs our efforts to change public health policy.
Six peer-reviewed publications based on information from MyLymeData have now been published. Our most recent one deals with sex-based differences between men and women. Did you know that compared to men, women with Lyme disease experience longer diagnostic delays, more severe symptoms, and higher rates of disability? Women may also be more likely to develop persistent Lyme disease.
These factors have significant implications in diagnosis and treatment approaches. The full article on sex-based differences in Lyme disease is available to download here.
Data from our patient registry has helped frame the scientific debate and has been cited extensively in public policy reports, such as those of the Tick-Borne Diseases Working Group. If you are not yet enrolled in MyLymeData, I encourage you to do so today.
Here are other ways we help Lyme patients:
- Giving timely, accurate news and commentary through our website, blogs, weekly newsletter, the Lyme Times, and social media platforms
- Offering a symptom checklist and a physician directory to patients seeking diagnosis and treatment
- Providing an online patient support group
Representing the Lyme community
We amplify the patient voice in a variety of ways. For instance, in 2023, our CEO Lorraine Johnson helped plan the groundbreaking workshop on infection-associated chronic illness held at the National Academy of Science, Engineering and Medicine. In prior years, representatives from our organization served the Tick-Borne Disease Working Group in several capacities. We contact legislators and health officials, and frequently answer Lyme-related questions from the news media.
Thank you for standing with us over the years. If you’re able to do so, please consider making an online donation today.
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 firstname.lastname@example.org.