Official Non-Profit Organizations, Support Forums, and Science-Speak
Resources for Lyme Disease education and support across the web
2010 - present
2010 - present
An award-winning documentary from Open Eye Pictures, Under Our Skin: The Untold Story of Lyme Disease brings to light the hidden epidemic that is Lyme Disease, as well as the political controversy surrounding its diagnosis and treatment. Its recently-released sequel, Under Our Skin 2: Emergence, continues to investigate the obstacles that researchers, physicians, and patients face, even while the epidemic expands to a global scale. Both films provide an invaluable resource to patients, physicians, and caregivers in understanding the complicated nature of Lyme Disease and why its diagnosis and treatment is infinitely more complex.
Global Lyme Alliance is the leading private non-profit organization specializing in the prevention, diagnosis, and treatment of Lyme and other tick-borne diseases through science-based research and education. Renowned for its grants program, which funds world-class research aimed at providing measurable advances in Lyme Disease treatment, Global Lyme Alliance also offers innovative education and awareness programs for the general public and physicians, including a new comprehensive educational curriculum for students.
In a sea of medical organizations laying claim to understanding the diagnosis and treatment of Lyme Disease, ILADS is one of the foremost non-profit medical societies that takes into account the severity of the disease, the urgency for education and long-term care, and the research demonstrating the persistence of the Borrelia burgdorferi bacteria in Chronic Lyme Disease patients. ILADS provides updates to Lyme Disease and co-infection research and legislation as well as information regarding diagnosis, treatment, and recovery for both the patient and medical community. The ILADS website also includes physician referrals in conjunction with their ILADEF (International Lyme and Associated Diseases Educational Foundation) physician training program.
A prominent Lyme advocacy organization in the United States since 1989, LymeDisease.org provides news, information, and analysis via an extensive educational website, email newsletters, blogs, social media, and its esteemed online journal, The Lyme Times. It also sponsors MyLymeData, a patient-powered research project that focuses on Chronic Lyme Disease. Additionally, LymeDisease.org offers a network of online support groups while working with Lyme advocates throughout the country on both local and national legislative and awareness efforts.
A medical support forum with an excellent Lyme community.
A collection of articles by a top Lyme physician as published in the Lyme Alliance Newsletter. These articles focus on how Lyme affects mental health as evidenced in neuropsychiatric symptoms that manifest themselves as familiarly-labeled psychiatric disorders, specifically in the late or chronic stage of the disease.
Patients with Lyme Disease and other tick-borne infections are at risk of suicide due to the documented psychological manifestations of Lyme and accompanying decrease in quality of life. If you or someone you love is suffering from depression and/or suicidal ideation, please contact your physician immediately or call the National Suicide Prevention Lifeline (1-800-273-TALK).
Resources related to chronic illnesses
Home to the original “Spoon Theory,” this website is one of my favorite resources for invisible and chronic illnesses — invisible because, after all, “you don’t look sick, so you must not be…” As a Lupus patient, founder Christine Miserandino knows the loneliness, isolation, and frustrations due to the miseducation surrounding chronic illnesses and disabilities and has provided a support resource with the intent of spreading awareness.
It’s hard to describe what living with a chronic illness is like, especially in terms of the fatigue and energy drain. The Spoon Theory may well be the best analogy I’ve ever read.