Episode 615: From Chronic Lyme to Lyme Disease Advocacy – Eva Scarano of LymeLnk | LIVE from ILADS

What happens when someone living with chronic Lyme disease uses their own experience to tackle one of the biggest challenges facing the Lyme community: a lack of public awareness, understanding, and compassion?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Eva Scarano, founder of LymeLnk, to discuss her personal Lyme disease journey, the creation of a patient-centered advocacy organization, and her mission to make Lyme disease education accessible to the general public.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores how Eva transformed her experiences with Lyme disease into a nonprofit organization focused on storytelling, community engagement, tick prevention, early detection, and public education.

Eva shares how she was diagnosed with Lyme disease in 2016 after developing a bull's-eye rash and flu-like symptoms, how her health deteriorated following a period of improvement, and how reaching her lowest point during graduate school inspired her to rethink her relationship with chronic illness.

Through her graduate studies at Parsons School of Design, Eva began researching the Lyme disease community and interviewing patients, advocates, and organizations to better understand where education and awareness efforts could have the greatest impact.

That research ultimately led to the creation of LymeLnk, an organization working to make basic Lyme disease knowledge as familiar to the public as other common health and safety information.

Rich and Eva discuss Lyme disease stigma, the importance of patient stories, community-centered design, tick-borne disease awareness in California, the role of climate and environmental changes, and innovative approaches to educating children and families.

Meet Eva Scarano: Founder of LymeLnk

Eva Scarano is the founder of LymeLnk, a community-focused Lyme disease education and awareness organization developed through her graduate studies at Parsons School of Design in New York City.

Before launching LymeLnk, Eva spent approximately six years working in corporate technology, including sales and product marketing.

She later pursued graduate studies in strategic design and management, a discipline that applies human-centered design principles to complex organizational and social challenges.

Eva's own experiences with Lyme disease inspired her to apply these methods to public health education and community advocacy.

Rather than building another organization focused primarily on research funding, clinical education, or legislative advocacy, she identified an opportunity to reach people who know very little about Lyme disease.

Her goal is straightforward: Help the general public understand the basics of Lyme disease so more people can recognize risks, take preventive action, and respond compassionately to those living with the illness.

A Textbook Lyme Disease Diagnosis in 2016

Eva's Lyme disease story begins in 2016 during her senior year of college in Ann Arbor, Michigan.

She developed symptoms commonly associated with early Lyme disease, including:

• A bull's-eye rash
• Flu-like symptoms
• Significant fatigue
• Cognitive difficulties

Eva visited an urgent care facility, where her symptoms were recognized and she received a Lyme disease diagnosis.

She subsequently worked with a practitioner experienced in treating Lyme disease.

Eva describes undergoing approximately three months of treatment involving antibiotics and herbal therapies.

The experience was difficult.

She recalls waking up to take an economics final exam and realizing she could not read the material.

With assistance from her university's disability services, she was able to complete her academic responsibilities.

Following treatment, Eva experienced approximately two years of significant improvement.

At the time, she believed the worst of her Lyme disease journey might be behind her.

When Symptoms Returned After Moving to San Francisco

In 2019, Eva moved into an apartment in San Francisco that she describes as having significant mold problems.

She associates that environmental exposure with a deterioration in her health.

After experiencing a period of relative stability, she began struggling with recurring symptoms and increasing health challenges.

Eva describes the following years as an unpredictable cycle of improvements and setbacks.

She continued working, traveling, and maintaining an active lifestyle while simultaneously managing her health.

Although Eva believes the mold exposure contributed to her decline, the interview does not establish a medical cause-and-effect relationship between the apartment and her subsequent symptoms.

Her experience reflects the difficulty many patients face when trying to understand which factors may be contributing to a complex illness.

Reaching Her Lowest Point During Graduate School

By 2023, Eva was attending graduate school at Parsons School of Design in New York City.

She was also teaching Pilates part-time, traveling for friends' weddings, and trying to maintain the active lifestyle she had enjoyed before becoming ill.

At the same time, she was managing multiple health conditions and ongoing symptoms.

Eva describes herself as someone who naturally enjoys staying busy.

Slowing down did not come easily.

Eventually, her health deteriorated to the point that she could no longer continue at the same pace.

She describes 2023 as the sickest period of her life.

During the interview, Eva discusses several possible contributing factors, including travel, demanding schedules, immune-related health concerns, and receiving influenza and COVID-19 vaccinations on the same day.

She explicitly acknowledges that she cannot identify a single cause of her decline.

Her experience does not establish that vaccination caused her symptoms or that receiving both vaccines together is generally unsafe. Receiving recommended influenza and COVID-19 vaccines during the same visit is considered acceptable for most eligible people, with individual medical circumstances discussed with a healthcare professional.

Eva's broader point is that complex illnesses can make it difficult to determine why symptoms worsen or improve.

Turning Pain Into Purpose Through Parsons School of Design

During her most difficult period, Eva began applying her graduate coursework to the challenges facing the Lyme disease community.

Her academic program focused on strategic design and management, including human-centered problem-solving and community research.

Rather than abandoning graduate school, she used her education to investigate how Lyme disease awareness could be improved.

Eva and her collaborators interviewed more than 100 people connected to the Lyme disease community.

These conversations helped identify common frustrations involving diagnosis, treatment, education, public awareness, and social support.

Eva concluded that many organizations were already doing valuable work in specialized areas.

However, she believed an important opportunity remained: reaching people who had never experienced Lyme disease and knew little about it.

This realization became the foundation for LymeLnk.

Why Eva Founded LymeLnk

Eva explains that the Lyme disease community includes numerous organizations addressing different parts of a complicated healthcare and public health landscape.

She highlights organizations such as:

• ILADS, which provides education and professional development for healthcare practitioners
• Center for Lyme Action, which focuses on legislative advocacy and public policy
• Global Lyme Alliance, which supports research and education
• Bay Area Lyme Foundation, which funds scientific research and advances awareness

Eva believes these organizations provide important specialized services.

Rather than duplicating their work, she wanted LymeLnk to complement it.

Her organization focuses on expanding basic Lyme disease knowledge among people outside the established patient community.

She argues that public education can help create a stronger foundation for prevention, earlier recognition, and greater compassion.

The ABCs of Lyme Disease Awareness

Eva describes LymeLnk's educational mission as helping people understand the ABCs of Lyme disease.

These include basic knowledge about:

Prevention: Understanding where ticks live, how exposure occurs, and how to reduce the risk of tick bites.

Early detection: Recognizing potential signs and symptoms and knowing when to seek medical evaluation.

Diagnosis: Understanding that Lyme disease testing has limitations and that clinical history matters.

Treatment: Knowing that early evaluation and appropriate treatment are important.

Eva believes people should not have to become seriously ill before learning these fundamentals.

She wants Lyme disease awareness to become part of everyday health education.

For practical prevention guidance, explore Tick Boot Camp's Tick Bite Blueprint.

Why Patient Compassion Matters as Much as Awareness

One of the most powerful moments in the interview comes when Eva describes feedback from Lyme disease patients participating in her research.

Her team asked what successful public education would look like.

Many patients did not begin by asking for complicated policy changes or scientific breakthroughs.

They wanted something much simpler.

They wanted to be able to tell someone they had Lyme disease and receive a response demonstrating basic understanding and compassion.

Eva explains that patients often feel isolated because people around them do not understand the illness.

This lack of understanding can make it harder to discuss symptoms, ask for accommodations, or feel supported.

She believes that improving public literacy could help reduce stigma and strengthen community support.

People living with Lyme disease deserve to be heard, believed, and treated with compassion.

Storytelling as a Public Health Education Strategy

Eva believes storytelling is one of the most effective ways to reach people who are unfamiliar with Lyme disease.

Statistics and medical information are important, but personal experiences can make an unfamiliar issue feel relevant.

Her approach combines patient stories with educational campaigns tailored to specific communities.

Rather than delivering identical messages to everyone, LymeLnk aims to understand what different groups need to know.

Potential audiences include:

• Parents seeking to protect their children
• Pet owners concerned about tick exposure
• Outdoor enthusiasts and recreational groups
• People working outdoors
• Communities affected by changing tick habitats
• Environmental and public health advocates

Eva believes educational programs become more effective when they are developed with the people they are intended to serve.

What Is Community-Centered Design?

Eva introduces the concept of co-design, a method of developing programs collaboratively with the people who will use them.

Instead of creating a campaign and asking a community to accept it, LymeLnk begins by learning about the community's experiences, concerns, and existing knowledge.

The organization then works with local partners to create appropriate educational materials.

Depending on the audience, these may include:

• Public service announcements
• Social media campaigns
• Community workshops
• Hands-on tick prevention demonstrations
• Educational programs for children
• Outdoor safety events
• Storytelling initiatives featuring patient experiences

Eva explains that the organization intends to test these approaches, measure their effectiveness, and improve them before expanding.

Her goal is to develop a model that can be adapted across different communities.

Why LymeLnk Launched in San Diego

Although Eva developed the concept while attending Parsons in New York City, LymeLnk was incorporated in California.

Eva explains that the organization established a presence in both San Diego and New York.

These locations offer contrasting opportunities for Lyme disease education.

New York has a long history of public awareness because Lyme disease is well established in the Northeast.

San Diego, by comparison, offers opportunities to educate communities that may be less familiar with local tick-borne disease risks.

Eva also grew up in California and had personal connections that could help support the organization's launch.

She believes Southern California is an important place to address misconceptions about where tick-borne diseases occur.

Lyme Disease and Tick Exposure in Southern California

Eva challenges the misconception that Lyme disease and other tick-borne illnesses are exclusively East Coast problems.

She explains that California has its own tick populations and documented tick-borne disease risks.

People who spend time outdoors, travel to other regions, or interact with pets may encounter ticks.

Eva believes a lack of awareness can contribute to missed opportunities for prevention and appropriate medical evaluation.

Her organization aims to educate Southern California communities without creating unnecessary fear.

The message is not that every tick carries Lyme disease.

It is that people should understand their local risks and know how to protect themselves.

The San Diego Launch Event: Bringing the Community Together

Eva describes LymeLnk's launch event in San Diego's Little Italy neighborhood.

Approximately 150 people attended.

The event combined social connection with education and featured food options designed to accommodate different dietary needs.

Eva shared her personal Lyme disease journey and explained the mission behind LymeLnk.

The event also featured a discussion with:

Dr. Liz Horn, principal investigator of the Lyme Disease Biobank, and Dr. Sharon Wampler of the San Diego Lyme Alliance.

Together, they addressed misconceptions about tick-borne disease in California.

Eva describes the event as an opportunity to connect patients, advocates, researchers, and community members in a welcoming environment.

A Tick Encounter at a La Jolla Coffee Shop

Eva shares a memorable story from the days leading up to LymeLnk's launch.

While working at a coffee shop in La Jolla, she overheard someone discussing a tick found on her body.

The woman explained that she had begun finding ticks regularly after walking her German Shepherd.

She mentioned areas around San Diego, including Nautilus Street and Kate Sessions Park.

Having lived in the area for many years, the woman was surprised by what she perceived as an increase in tick encounters.

Eva introduced herself and explained her work with LymeLnk.

The conversation became an unexpected opportunity for public education.

Eva describes the encounter as a perfect example of why her organization exists.

People may encounter ticks in places they do not associate with Lyme disease.

A simple conversation can help someone recognize a risk and learn how to respond.

Climate Change, Habitat Changes, and Tick Populations

Eva and Rich discuss environmental factors that may influence tick distribution.

Eva raises concerns about climate change, habitat fragmentation, and changing conditions that affect tick survival and activity.

Scientific research has identified relationships between climate, habitat, wildlife populations, and the distribution of certain tick species.

However, local changes in tick encounters can have multiple causes, and an individual observation cannot establish why a particular area has more ticks.

Eva believes environmental education and Lyme disease awareness should increasingly work together.

Her approach encourages communities to understand how human activity and ecological conditions influence public health.

Measuring Whether Lyme Disease Education Works

Eva explains that LymeLnk wants to measure the effectiveness of its educational programs rather than simply count event attendance.

Following the San Diego launch, the organization surveyed participants.

Eva reports a 76% increase in an education-related measure among attendees.

The interview does not specify the survey methodology or how that percentage was calculated.

Nevertheless, Eva sees the early feedback as encouraging.

She believes that gathering information before and after educational programs can help identify which approaches are most effective.

This emphasis on measurement reflects her background in strategic design.

Bringing Tick Prevention Education Into Schools

One of LymeLnk's first proposed initiatives involves partnering with an organization that provides after-school STEM programming to children in San Diego.

Eva explains that the project was still in development at the time of the interview.

The goal is to incorporate tick-borne disease education into existing science and outdoor learning programs.

Potential topics include:

• Tick biology and ecology
• Wildlife and tick habitats
• Outdoor safety
• Tick checks and prevention
• Understanding how infectious diseases spread
• Recognizing when to seek help after a tick bite

Eva believes teaching children about ticks through familiar science concepts can make prevention education engaging and practical.

Rather than creating an entirely new curriculum, LymeLnk hopes to collaborate with established organizations and adapt existing educational resources.

Scaling Lyme Disease Education One Community at a Time

Eva explains that LymeLnk intends to begin with smaller educational programs and gradually expand.

The initial focus is San Diego.

The organization hopes to develop programs with local partners, evaluate the results, and refine its approach.

If the early programs are successful, Eva envisions expanding to additional schools, outdoor organizations, and community groups.

She mentions potential opportunities to engage outdoor enthusiasts and organizations such as the Sierra Club and REI communities.

Her long-term goal is to increase Lyme disease literacy throughout San Diego County and eventually adapt the model for other regions.

Why Collaboration Is Essential

Eva emphasizes that LymeLnk does not want to reinvent educational resources that other organizations have already developed.

Instead, she hopes to collaborate with researchers, advocacy groups, and community organizations.

These partners may provide existing educational materials, scientific expertise, and local knowledge.

LymeLnk can then help adapt that information for audiences who may otherwise never encounter it.

This approach recognizes that effective advocacy requires different organizations to contribute their unique strengths.

For more conversations with researchers, advocates, and community leaders, explore the Tick Boot Camp Podcast.

Key Takeaways

• Eva Scarano was diagnosed with Lyme disease in 2016. Her symptoms included a bull's-eye rash and flu-like illness while attending college in Michigan.
• Her health challenges continued after initial improvement. Eva describes renewed symptoms beginning in 2019 and a particularly difficult period in 2023.
• Graduate school became a turning point. She applied strategic design principles to the challenges facing the Lyme disease community.
• LymeLnk grew from community research. Eva and her collaborators interviewed more than 100 people to understand unmet educational needs.
• Public awareness is the organization's primary focus. LymeLnk aims to help people understand prevention, early detection, diagnosis, and treatment basics.
• Patient compassion is central to the mission. Eva believes greater public understanding can reduce stigma and isolation.
• Storytelling is a powerful educational tool. Personal experiences can help make Lyme disease information more relatable.
• San Diego became the organization's launch location. Approximately 150 people attended the inaugural event.
• Community partnerships will drive future programs. LymeLnk hopes to develop educational campaigns collaboratively with schools and other organizations.
• The long-term goal is scalable Lyme disease literacy. Eva envisions expanding successful educational models from one community to another.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation features Eva Scarano, founder of LymeLnk, discussing her personal Lyme disease journey and her mission to transform public understanding of tick-borne illness.

Rich and Eva explore the power of storytelling, patient compassion, community-centered design, Lyme disease education in California, and the importance of reaching people before they become patients.

The conversation highlights how lived experience, creativity, and collaboration can help strengthen Lyme disease advocacy.

Discover additional conversations with patient advocates, researchers, and healthcare professionals through Tick Boot Camp's LIVE from ILADS podcast series.