66. Advocating for change with Donna Lugar
Nova Scotia Lyme disease advocate Donna Lugar shares her experience educating the public and working to improve Lyme disease policy.
In this episode, we speak with Nova Scotia Lyme disease advocate Donna Lugar. She currently runs the Nova Scotia Lyme Support Group, the Nova Scotia Lyme Advocacy Group, and is working to develop the Nova Scotia Lyme and Tick-Borne Diseases Association. She also writes a Lyme disease blog, Shining the Lyme Light. We spoke with Donna about her experience as an advocate, including her work educating the public and working to improve Lyme disease policy in Nova Scotia and the rest of Canada.
Becoming involved with Lyme disease advocacy
Donna says she first became involved in Lyme disease advocacy when she dealt with health issues for many years without receiving a diagnosis or appropriate response from health care practitioners. When she started to research Lyme disease, she realized that there were many people who were suffering and decided it was time to push things forward and elevate the discussion.
Ticks and Lyme disease in Nova Scotia
Donna explains that the number of Lyme disease cases has increased in Nova Scotia, with the entire province now being considered endemic for Lyme. With Nova Scotia being so close to the state of Maine, which has thousands of confirmed cases, it seems logical that there would be many cases in Nova Scotia as well. Since Lyme cases are so underdiagnosed, there are likely many more cases than the reports indicate.
Gender bias in Lyme disease diagnosis
Donna points out that it’s also interesting that the majority of people diagnosed with Lyme disease in Nova Scotia are men, but when she holds her support group meetings or talks to members of the public, it’s mostly women who are dealing with later stages of Lyme. She says this suggests a gender bias in how women are overlooked by many doctors, including her own.
Educating the public and advocating for improvements to policy
Donna speaks of her strategies for advocating and educating the public about Lyme disease, including using social media, writing a blog, starting support and advocacy groups, and how it’s a full-time, unpaid job talking to as many people as she can. She also talks about her experience organizing letter writing campaigns to contact MLAs and MPs to advocate for improvements to policy, meeting with Public Health officials and Nova Scotia’s Minister of Health, and creating and working on petitions. Donna also details her experience organizing conferences about Lyme disease in Nova Scotia.
Lyme support
Donna says she wants listeners to know that there are people and places they can turn to to learn more about Lyme disease and receive support, whether that be through support groups, social media, blogs, or books. She says she would love to see people who are not specifically dealing with Lyme disease to have their “aha” moment and do something to help, whether it’s raising awareness, talking to people who are struggling with the disease, educating the public, and more.
