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Touched By Lyme

an image of Dorothy Kupcha Leland

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 Vice-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: Max Fierek fights to ride–and spread Lyme awareness

22
DEC
2020
Max Fierek
When you see videos of 21-year-old Max Fierek on a mountain bike, you’ll probably have no inkling of what he’s been doing for the last decade or so. Riding bikes as much as he can, of course. But there’s a lot more to his story. Growing up in Minnesota, Max was always an active... Read More »

TOUCHED BY LYME: Feeling less “alone, despairing and hopeless”

13
DEC
2020
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 join sub-groups, such as for individual states and the parents of children with Lyme.... Read More »

TOUCHED BY LYME: Working Group holds final meeting. What’s next?

04
DEC
2020
tbdwg--12
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 soon. Much of the meeting was devoted to crossing the T’s and dotting the I’s in that report. But, true to form, this meeting was... Read More »

TOUCHED BY LYME: Jane Barrows keeps fighting for Lyme patients in RI

24
NOV
2020
rlene O'Connor & Jane Barrows
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 is given out annually by The Newport Daily News as part of its Community Service Awards. Barrows, now 85, started the group... Read More »

TOUCHED BY LYME: Contentious TBDWG vote delivers a win for patients

20
NOV
2020
Capt Scott Cooper and Pat Smith
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 2020 Report to Congress is due in December. On November 17, it held what may have been its most significant meeting to date. This was as... Read More »

TOUCHED BY LYME: Their message is clear. Patients want to get well.

17
NOV
2020
what Lyme patients want
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 work to educate patients, provide them with information, and to improve the lives of the hundreds of thousands who... Read More »

TOUCHED BY LYME: Shapiro and Walker tried having it both ways. It didn’t work.

30
OCT
2020
Drs. David Walker & Eugene Shapiro
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 Lyme and other tick-borne conditions. In concept, members would share their own... Read More »

TOUCHED BY LYME: What’s true Lyme patient representation?

27
OCT
2020
TBDWG pub comments
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, and mother of a daughter with long-term Lyme disease. As this Working Group’s second term draws to a clos... Read More »

TOUCHED BY LYME: Why what’s on a death certificate matters so much

22
OCT
2020
Carl Hamrin
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 the field of computer sciences. He had years of good health, as he and his wife Jeannie led an active outdoor life. However, nine years ago,... Read More »
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