LYME SCI: Podcast features Lorraine Johnson on MyLymeData
LymeDisease.org’s Lorraine Johnson recently joined Cindy Kennedy on the “Living with Lyme” podcast. Cindy describes Lorraine as a “hero” of the Lyme community, stating: “She is the wind behind the wings of change. She has her fingers on the pulse of all new information and she is the face of Lyme change.”
Cindy Kennedy, a board-certified Family Nurse Practitioner with a Master of Science degree and over 19 years’ experience providing nursing care, is the founder of “Living with Lyme.”
The interview is refreshingly honest. Both women tell of their frustration with the continued lack of general knowledge among the medical community and the years of slow progress among policy makers.
Lorraine shares her “reluctant” introduction into the world of Lyme disease that led her down a 5 to 7 year path looking for answers to her health—a story too many patients with Lyme can relate to. Luckily for the rest of us, this journey brought Lorraine to LymeDisease.org, where she now devotes herself to helping shape health policy through advocacy, legal and ethical analysis, and research.
Cindy and Lorraine share their wholehearted support for research into Lyme disease. They discuss the MyLymeData project, of which Lorraine is principal investigator. MyLymeData is an online patient registry that lets patients pool their data within a secure system. Researchers are then able to use this de-identified data to compile statistics to help us discover why some patients stay sick and others get better.
MyLymeData is already the largest study of Lyme disease using real-world data. Listen to the interview to discover how you can join MyLymeData and how LymeDisease.org works to increase the quality of life for people with Lyme and other tick-borne diseases.
Click below to listen to the interview.
I found about Lymes when it got to my brain stem, and the extra, was just a seizure, it was lyme on the was eating the ends off of my nerve, causing the left side of body. talking eating and no control of my left side, incontence which still have no control , if I time myself I make can make it to bathroom. i walk with a walker,if out a wheel chair…I don’t remember a tick.bite…now I have Chronic Lymes Disease…taking a shower, getting dressed and doing my hair makes me me so tired, I would rather go back to bed.. People so your own reseaach, the doctors don’t tell you, mainly cause they don’t know the them self. I have little help ….