TOUCHED BY LYME: Thanksgiving in the Lyme world, 2018

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Reprinted from LymeDisease.org with the kind permission of Dorothy Kupcha Leland. To read the original article, click here. 

This is the tenth year I’ve had the privilege of writing a Thanksgiving-themed blog, acknowledging good things taking place in the Lyme community.Sometimes, alas, we get bogged down in the challenges that surround us and may fail to notice that there are positive developments, too. Here’s some of what’s on my gratitude list this year:

Lyme: The First Epidemic of Climate Change

Lyme disease—the science, the politics, the patient experience—is an incredibly complex topic to explain to the public at large.

Investigative journalist Mary Beth Pfeiffer’s book does an outstanding job of doing just that.

“Hard hitting…a powerful wake-up call…heart-wrenching…superbly written and researched” are some of the ways it’s been described by many prominent reviewers.

I’m also thankful that Pfeiffer was a speaker at LymeDisease.org’s MyLymeData2018 conference. Click here to watch her excellent presentation.

Patient-powered research, via MyLymeData

More than 12,000 patients have enrolled in our big data project, which gathers the real-world experiences of people with Lyme and other tick-borne diseases. It’s now the largest study of chronic Lyme patients ever conducted.

More good news: our first publication based on the findings of MyLymeData has been published in the peer-reviewed journal “Healthcare.” Click here to read more about it.

Tick-Borne Disease Working Group

Many members of the Lyme disease community have been actively involved with the federal TBD Working Group. There are patient representatives on the panel itself, as well as on its seven subcommittees. Furthermore, scores of Lyme patients (and loved ones of Lyme patients) have provided both verbal and written comments.

The Working Group recently sent its first report to Congress, calling for the development of better diagnostic testing and treatment, strengthening national surveillance, and other issues. It has received widespread attention in the news media. Click here to read more.

Avril Lavigne’s “Head Above Water”

The musical superstar’s first new song in five years was born out of her personal struggle with Lyme disease. She’s using her fame to raise awareness about Lyme disease and funds to help people with Lyme. Watch her music video here:

And we’re thankful for YOU

We’re grateful for you, members and friends of LymeDisease.org. With your support, we continue our efforts to empower Lyme patients through advocacy, education and research.

We wish you all a Happy Thanksgiving, and look forward to continuing to work together in the future.


TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-President and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.

 

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