Twin sisters Jessica Bedrinana and Jamie Johansson who are running the Cliff Mountains 2 Beach Marathon to raise money for the LymeLight Foundation in May. Courtesy of Jessica Bedrinana

Twin sisters run marathon to raise awareness for Lyme disease, PANDAS

It took nearly a year for Jessica Bedrinana’s 9-year-old daughter, Sophie, to be correctly diagnosed with Lyme disease and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep).

In the summer of 2015, Sophie was a healthy young girl, who loved swimming, camping and hiking with her family throughout Santa Clarita and Southern California.

However, that all changed a few months later in September, when she began experiencing flu-like symptoms, extreme body fatigue, joint pain, headaches, dizziness and difficulty breathing.  Months later, she also began showing signs of OCD, emotional liability and hyperactivity.

“My daughter demonstrated a variety of odd symptoms that the doctors could not explain and she was ultimately diagnosed with a psychological disorder,” Bedrinana said.  “I think that’s really common for people suffering from Lyme disease.”

Sophie underwent countless blood tests, was hospitalized twice and was misdiagnosed twice by her pediatrician and rheumatologist before her mother stumbled across a video of Ally Hilfiger discussing her struggles with Lyme disease.

“My very first thing leading to me to Lyme disease was an interview with Ally Hilfiger and her book ‘Just Bite Me’ and a lot of her symptoms were similar to my daughter’s,” Bedrinana said.

In May 2016, Bedrinana found a Lyme Literate Medical Doctor (LLMD) who conducted testing to determine Sophie had both Lyme disease and PANDAS.

Now, 10-year-old Sophie is back at school and Bedrinana is training with her twin sister, Jamie Johansson, to run a marathon to honor her daughter and bring awareness to her illnesses.

Marathon and fundraising

At the end of May, Bedrinana and Johansson will complete the Clif Mountains 2 Beach Marathon to raise money for the LymeLight Foundation, which helps families pay for treatment and medications to fight against Lyme disease.

“I’m part of a lot of forums and had asked the group which foundation should I raise funds for and the consensus was LymeLight because they donate to families who can’t afford treatment,” Bedrinana said.  “I know how difficult it is because we had to pay out of pocket for a lot of expenses.”

Through their online donation site, https://goo.gl/rvZyib, the twins are having their supporters donate money for every mile they run in increments from $0.20 per mile to $20 per mile.

This is the second time the sisters will run a marathon together since they were teenagers living in the Santa Clarita Valley.

“We did a marathon when we were 19 together so this is our 20th reunion in a way,” Johansson said.

The two will also be sporting bright socks and LymeLight foundation shirts to draw awareness to Lyme disease and encourage conversations with individuals about the disease.

“For the Lyme community and on behalf of myself, I want to bring awareness that Lyme disease does exist in this area in California and specifically LA County and the Santa Clarita Valley,” Bedrinana said.  “It exists here, there is evidence that it exists here and I just want the public and doctors to be more open-minded about it being here and the fact that it can look like other illnesses.”

In Santa Clarita, there are even signs that warn of ticks in the area that may carry Lyme disease and other related illnesses.

“People don’t recognize that it exists here,” Johansson said.  “They recently even put up a sign at Placerita Nature Center.”

Living disease advocacy

According to the Center for Disease Control (CDC), more than 300,000 people are infected with Lyme disease each year, making it one of the fastest growing vector-borne illnesses in the U.S.

According to the International Lyme and Associated Diseases Society (ILADS), Lyme disease should be considered in the “differential diagnosis of rheumatologic and neurologic conditions… as well as difficult-to-diagnose multi-system illness.”

“Lyme disease has been called the great imitator,” Bedrinana said.  “My daughter had many of the symptoms of Lupus so she was diagnosed with that.”

Bedrinana said that oftentimes the testing for Lyme disease is not reliable and that the diagnosis should be a clinical one.

“It’s a problem when the doctors here don’t recognize it and then people get misdiagnosed for other things,” she said.

For Sophie, her own medications and immunosuppressants altered her test results.  It was not until after she begun treatment for Lyme disease that the bacteria reemerged and she tested positive by CDC standards.

“Lyme disease is dynamic just as the world is,” Bedrinana said.

Bedrinana found that a multifaceted approach to treating Lyme disease, including medications and herbal supplements, are what made her own daughter get better.  She believes that to treat the disease, it takes more than just a few rounds of antibiotics.

“People think that Lyme disease can be cured with a couple rounds of antibiotics when in reality people are chronically infected and are infected for a really long time,” she said.

Today, Sophie is feeling healthier with her treatment plan and Bedrinana has found a new passion in advocacy for both Lyme disease and PANDAS.

“I’ll always try to raise awareness for PANDAS or Lyme disease I will because it’s in my blood now,” she said.

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On Twitter as @_ChristinaCox_

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