Florida: Lyme Advocacy Site

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Within these groups of individuals across the United States and other countries, there are fathers, mothers, brothers, sisters, sons, daughters and so forth. As Dr. Jemsek states, “sooner or later” your family will be affected by this growing disease and you, too, will be trying to make a difference.

“In the Lymelight” ~ Lyme Advocacy Site

Marilyn is an advocate, daughter, leader, caretaker, warrior, and supporter who created the Lyme Advocacy Site in 2009 in hopes of making a difference. Originally, it was a site that she created in 1998 when she was diagnosed with fibromyalgia, chronic fatigue syndrome and later Lyme Disease. She was once a critical care nurse and supervisor until her symptoms overwhelmed her mind and body only to be ruled permanently disabled. Despite her having to change careers, losing her husband and her life to this disease, she has aspired to help others in their struggles.

She began advocating for others and their troubles when she was selected as the President of her local CFS/FM Support Group in 1997. “We enlarged to over 300 members, I sent out monthly newsletters, filled with research and protocols of the time and increased the numbers of meetings and added locations. For the first time, speakers were scheduled and I provided a monthly lecture.” Then, later she helped others by acting as a nurse advocate on their behalf. “The support group eventually dissolved after almost everyone was diagnosed with Lyme disease and began getting better with treatments.” However, she still provides comfort to those that need it by telephone.

Despite her dramatic change in lifestyle, from spending most of her career in Critical Care as the Nurse Manager of a MICU, she has made the most of it. As Supervisor of a 500 bed hospital, she walked at least 10 miles each shift. Then, “soon and slowly, I couldn’t put two sentences together and had difficulty understanding simple requests from others. Of course, like most of us, I was considered to be a malingerer by some peers.”

You may contact Marilyn Kerr RN at marilynk158@gmail.com for more information.

Lyme-Aware is an independent organization and has no affiliation with this organization or individual.

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