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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: 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 »

TOUCHED BY LYME: Launching a “moonshot” to cure Lyme by 2030

19
OCT
2020
Lyme moonshot
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 disease by 2030. Dubbed the “Lyme Moonshot,” the initiative calls for establishing a TICK office... Read More »

TOUCHED BY LYME: My conversation with “Lyme Time Podcast with Ali”

17
OCT
2020
ali podcast--Lyme Time
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, but no real answers. Finally, one of her medical practitioners put the puzzle... Read More »

TOUCHED BY LYME: Legislative update and a Lyme “moonshot”

15
OCT
2020
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 2020 conference. (Click here to watch the replay of the event on Facebook.) Among the developments... Read More »

TOUCHED BY LYME: Resources to get you going in the right direction

29
SEP
2020
this way or that way, road sign
LymeDisease.org is one of the foremost Lyme patient advocacy organizations in the United States. We provides a wealth of information on our website–about ticks, Lyme and other tick-borne diseases, prevention, diagnosis and treatment. Special features include: Symptom... Read More »

TOUCHED BY LYME: Walker & Shapiro fail to change report’s Chapter 7

25
SEP
2020
Drs. David Walker & Eugene Shapiro
The federal Tick-Borne Disease Working Group held another online meeting Tuesday. Its upcoming Report to Congress continues to inch towards completion. At this stage of the game, the report consists of a series of recommendations that have already been approved by the panel.... Read More »

TOUCHED BY LYME: Will Working Group acknowledge patient voices?

17
SEP
2020
TBDWG
Prior to this past Tuesday, the last time the public tuned in for an online meeting of the Tick-Borne Disease Working Group was July 8. That day, we witnessed a lot of bad behavior by certain panel members. I wrote then: The meeting rapidly devolved into what looked like a street... Read More »

TOUCHED BY LYME: Can we cure Lyme disease…or what?

27
AUG
2020
is there a cure for Lyme disease
The following question from somebody named Tom showed up in my inbox today: Do you know of a cure for Lyme disease or are we just throwing money at it year after year? That was the whole message. I know nothing about Tom’s circumstances, but he asks a fair question and I’ll... Read More »

TOUCHED BY LYME: “Axel and the True Story of an Imaginary Illness”

07
AUG
2020
Axel and the true story of an imaginary illness
Dorothée Lorang, a filmmaker who lives in Nantes, France, has two children. One of them, Axel, is the central character in a remarkable video called “Axel and the True Story of an Imaginary Illness.” Can you guess what the “imaginary illness” is? Though under an hour long, the... Read More »
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