Why people with Lyme Disease feel there isn't enough awareness

A lack of awareness about Lyme Disease can lead to years of health problems and things like wearing repellent on exposed skin and checking often for ticks can help avoid it. (Mar. 14, 2017)

On Friday, the Lyme Disease Advisory Committee Meeting (LDAC) held a presentation in Sacramento, along with the California Department of Public Health (CDPH).

Gregory Hacker, a biologist with the CDPH, gave an update on ticks in the Folsom Lake area. 

Dorothy Kupcha Leland was there to hear the results of Hacker's study. She's the author of 'When Your Child Has Lyme Disease: A Parent's Survival Guide.' It's everything she wishes she had known a decade ago, when her now 25-year-old daughter was first diagnosed. 

So what exactly is Lyme Disease?

According to national advocacy group LymeDisease.org, it is a bacterial infection primarily transmitted by ticks found in wooded and grassy areas. 

Leland said the presentation confirmed what she had always assumed, that there are far more Lyme-infected ticks in Northern California than people think. Her daughter was first diagnosed at just 14-years-old. Lyme Disease affects people of all ages, but are common in children and older adults. Those who spend time outdoors often are more exposed. 

"Our daughter was the one that was sick, but it takes a toll on the whole family, and of course, for some families, multiple members are sick." she said.

Since her daughter's diagnosis, Leland has been a key player in spreading awareness for Lyme Disease. She is also currently the VP for Education and Outreach for LymeDisease.org, a national advocacy group.

"Part of the suffering is from the disease itself. Part of the suffering is because you are ignored by the medical establishment." she said.

Symptoms of early Lyme Disease include flu-like symptoms (fever, chills, sweats, muscle aches, fatigue). Some may get erythma migrans, or skin rashes. 

Leland explained that the disease is often not taken seriously, and in many cases, treatments are not covered by insurance. 

"It's been firmly established in the east coast," said Leland, referring to the origin of the name. Lyme Disease was named after Lyme, Connecticut, a small town where it was first diagnosed. 

The map above shows reported cases in the United States in 2015. Although there are far more cases on the east coast, the CDC adds Northern California is one of three areas heavily impacted.

Around 300,000 people are estimated to be diagnosed with Lyme Disease each year. That's 1.5 times the number of women diagnosed with breast cancer and 6 times the number of people diagnosed with HIV/AIDS. 

Many experts, including Leland, say the number of cases are often underreported because the disease is often misdiagnosed or not diagnosed at all. Leland's daughter was diagnosed within 9 months of her first symptoms, but she adds they were lucky. Many people go year's without being diagnosed. 

Lyme Disease is often misdiagnosed with chronic fatigue system, fibromyalgia, and multiple sclerosis. 

"I think knowledge is power and people have to know that the risks exists and that there are ways to protect themselves," said Leland. "That's the message I'd like to get out."

Copyright 2017 KXTV


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