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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 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: Repeating incorrect information doesn’t cause it to become correct

14
MAR
2022
In November 2021, a commentary promoting the Infectious Diseases Society of America’s newly updated Lyme disease guidelines was published in the American Journal of Medicine. (Unfortunately, those new guidelines have made it even harder for Lyme patients to get properly diagnosed... Read More »

TOUCHED BY LYME: Horowitz responds to the “old persistence debate”

07
MAR
2022
Dr. Richard Horowitz
As noted in my most recent blog about the Tick-Borne Disease Working Group, a major sticking point has once more emerged between patient-aligned panelists and those aligned with the Infectious Diseases Society of America (IDSA). The same issue raised its head during the 2018 and... Read More »

TOUCHED BY LYME: Highs and lows at TBD Working Group meetings

04
MAR
2022
The federal Tick-Borne Disease Working Group’s recent online meetings gave reasons for Lyme advocates to be both optimistic and pessimistic about the panel’s activities in the year ahead. First, some optimism (1.) The nine advocates who gave public comment did an excellent job.... Read More »

TOUCHED BY LYME: Advocates from 45 states seek more Lyme funding

25
FEB
2022
More than 300 Lyme advocates from throughout the US took part in this week’s Virtual Lyme Fly-in. It was a chance for individuals to educate their Congressional representatives about the need for increased federal funding for Lyme and other tick-borne diseases. They also made... Read More »

TOUCHED BY LYME: “My Promise to Alex” –a memoir and a call to arms

21
FEB
2022
Alex Hudson grew up in Fresno, California. When she was 11 years old, she started complaining that her legs hurt. That was the beginning of Alex’s “mystery illness,” with waxing and waning symptoms that a parade of doctors couldn’t figure out. Sometimes her knees swelled up to... Read More »

TOUCHED BY LYME: When parents are unjustly accused of harming their sick child

14
FEB
2022
If your child has chronic Lyme disease, PANS/PANDAS, mast cell activation syndrome, POTS, or any number of other “medically complex conditions” – you have probably experienced being disbelieved by many people. You may be a decent, well-intentioned parent doing everything you can... Read More »

TOUCHED BY LYME: Register for Lyme Fly-in by February 10

03
FEB
2022
I’m often asked what’s the best way to get started as a Lyme advocate. And one of my answers is always “Sign up for the virtual Lyme Fly-in.” It’s an opportunity for you to speak directly with the offices of your elected representatives in Congress—via... Read More »

TOUCHED BY LYME: Who will represent YOUR state? Maybe you?

27
JAN
2022
More than 200 Lyme advocates from throughout the United States have already signed up for this year’s virtual Lyme Fly-in, scheduled for February 22-23. But there’s room for more, especially from the following underrepresented areas: Alaska, Alabama, Arkansas, Connecticut,... Read More »

TOUCHED BY LYME: The blogs you cared about most in 2021

07
JAN
2022
The team at LymeDisease.org strives to keep you up-to-date on information relevant to the Lyme community. Throughout the year, we regularly post blogs on our website that include news, analysis and personal stories. We deliver them to you in a variety of ways: social media links... Read More »
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