TOUCHED BY LYME: Keeping records for those who have died
LymeDisease.org launched the MyLymeData project a year ago, in order to capture the experiences of people with Lyme disease. When participants sign up, they are asked questions like: Do you know when and where you were infected? What symptoms did you experience? How long did it take you to get diagnosed? Which treatments were tried? Which ones helped or didn’t help?
More than 6000 people have signed up so far, making this the largest study of chronic Lyme patients ever undertaken.
Alas, until recently, there was a segment of the population that we weren’t set up to include: Lyme patients who have died. Now, however, adjustments to MyLymeData allow you to enter information on behalf a person who is deceased.
If your spouse or other family member had Lyme and has passed away, you’ll be able to tell us what information you know about the person’s Lyme experiences, what the cause of death was, and whether or not Lyme disease was listed on the death certificate.
This kind of information has never been systematically collected, and opens the possibility for us to gain new understanding of this aspect of Lyme disease.
Betty Gordon is a long time Lyme patient and advocate that I’ve known via social media for many years. I recently had the chance to meet her in person.
She’s been wanting to share information about her deceased husband Jack’s Lyme experience since she first heard about MyLymeData. On autopsy, Jack’s brain was found to have evidence of both Lewy body dementia and Borrelia burgdorferi (Lyme disease).
According to renowned researcher Dr. Alan MacDonald, this was the first time that Borrelia had been documented in Lewy body tissue.
If you want to share information about a Lyme patient who has passed away, there are two ways to do it. If you are enrolled in the program yourself, there is now a place to click to enter information about someone who has died. Otherwise, you can just join in that person’s name, and answer the questions on that person’s behalf. There’s a spot to indicate that you are answering for someone who has died.
When it comes to solving the challenges of Lyme disease, the more information the better.
If you have trouble registering or entering data, please send an email with your phone number to firstname.lastname@example.org. A team member will get back to you.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at email@example.com.