Touched By Lyme
By Dorothy Kupcha Leland
This blog has several goals. First, to explore the personal side of Lyme disease and how it affects individuals and families. Second, to highlight useful information for people seeking answers about this complicated illness. Third, to help foster a sense of unity and shared purpose among the many diverse members of the Lyme community. Dorothy, who serves as President of LymeDisease.org, has a family member with Lyme disease. She is co-author of a book called When Your Child Has Lyme Disease: A Parent’s Survival Guide.
TOUCHED BY LYME: Feeling less “alone, despairing and hopeless”
LymeDisease.org sponsors an online support and discussion forum called “US National Lyme Disease Support Groups.” Once you’ve joined the main group, there are opportunities to…
TOUCHED BY LYME: Working Group holds final meeting. What’s next?
The final meeting of the 2019-2020 Tick-Borne Disease Working Group was held online December 2. The panel’s report should be on its way to Congress…
TOUCHED BY LYME: Jane Barrows keeps fighting for Lyme patients in RI
Jane Barrows, founder of a Lyme support group in Newport, Rhode Island, has been named the “Citizen of the Year” in her region. The recognition…
TOUCHED BY LYME: Contentious TBDWG vote delivers a win for patients
The current session of the federal Tick-Borne Disease Working Group is drawing to a close. This panel has been meeting since June 2019 and its…
TOUCHED BY LYME: Their message is clear. Patients want to get well.
I made these remarks by telephone to the Nov. 17 meeting of the federal Tick-Borne Disease Working Group. I’m Dorothy Leland, vice-president of LymeDisease.org. We…
TOUCHED BY LYME: Shapiro and Walker tried having it both ways. It didn’t work.
The Tick-Borne Disease Working Group is supposed to bring together 14 people—scientists, doctors, health officials, patient advocates—with different areas of expertise and divergent views about…
TOUCHED BY LYME: What’s true Lyme patient representation?
I delivered the following public comments by phone to the federal Tick-Borne Disease Working Group on October 27. I’m Dorothy Leland, vice president of LymeDisease.org,…
TOUCHED BY LYME: Why what’s on a death certificate matters so much
Carl Hamrin was born in Sweden, emigrated to the United States, and became a US citizen. His family settled in Maine, where he worked in…
TOUCHED BY LYME: Launching a “moonshot” to cure Lyme by 2030
The Center for Lyme Action (CLA), a nonprofit organization dedicated to increasing federal funding for Lyme disease research, today outlined a strategy to eliminate Lyme…
TOUCHED BY LYME: My conversation with “Lyme Time Podcast with Ali”
Alicia White suffered from bizarre, often painful physical symptoms for years. Consulting numerous doctors, the Southern California resident received many conflicting test results and (mis)diagnoses,…
TOUCHED BY LYME: Legislative update and a Lyme “moonshot”
Bonnie Crater, co-founder of the Center for Lyme Action–a lobbying group seeking more federal funding for Lyme disease–gave a legislative update at the recent LymeMIND…
TOUCHED BY LYME: Resources to get you going in the right direction
LymeDisease.org is one of the foremost Lyme patient advocacy organizations in the United States. We provide a wealth of information on our website–about ticks, Lyme…