NBCA Volunteer President Leslie Lake: From personal experience to blood clot advocacy

Leslie Lake’s energy and enthusiasm are contagious. When she sits down to talk about her journey to leading the National Blood Clot Alliance (NBCA), a partner organization of the World Thrombosis Day campaign, her passion for advocacy is palpable.

It’s hard to imagine the Leslie Lake of 2018, who found herself faced with an alarming and life-threatening blood clot diagnosis.

Overcome with anxiety and worry, Leslie pulled herself up from her bootstraps and not only overcame her diagnosis, but she got to work reimagining blood clot advocacy, education and awareness.

Derailed plans

In June 2018, Leslie’s career was flourishing as a financial investment executive based in New York City. Frankly, she had never thought much about blood clots. Her professional life was busy, and she was preparing to give an important speech at an event that evening.

The first symptoms she experienced were shortness of breath and a rapid heart rate. While initially dismissing the signs as nerves for her upcoming speech, Leslie eventually sought medical advice after the symptoms persisted.

However, her first attempt at seeing a doctor was met with a frustrating lack of urgency. With no available appointments, Leslie had to rely on a walk-in clinic, where a nurse suggested she visit the emergency room after noticing her labored breathing.

A startling diagnosis

It wasn’t until after hours of uncertainty that a scan of her lungs revealed the gravity of the situation: Leslie had blood clots in her lungs, known as a pulmonary embolism (PE). Leslie was rushed to the intensive care unit (ICU) and she was treated immediately.

Leslie remembered this time as a state of shock, confused by the lack of communication and support from her healthcare providers. As she left the hospital, she was discharged without any clear instructions about what had happened to her or what to expect next.

Back home, Leslie grappled with fear and uncertainty. Left with no information, she turned to the internet, searching for answers about blood clots, recurrence rates and her long-term prognosis.

She learned about the risk for recurrence and struggled with the anxiety that came from not knowing what to look for or how to manage her condition.

The transition back to normal life was anything but smooth. Even while attending work meetings, Leslie was often consumed with thoughts of her condition and fear of the future.

Connecting with the NBCA

Leslie soon found the National Blood Clot Alliance (NBCA), a non-profit organization that aims to educate individuals, families, and healthcare providers on the risks, signs, and impacts of venous thromboembolism (VTE).

Through innovative programs, community outreach and partnerships with leading medical experts, NBCA empowers patients to navigate life after a blood clot diagnosis and promotes research and policy efforts aimed at reducing the prevalence and recurrence of blood clots.

The ISTH World Thrombosis Day campaign has partnered with the NBCA for more than a decade. Together, both organizations unite with a shared mission to drive change and help save lives from the condition.

Transforming a diagnosis into advocacy

Leslie’s personal story is similar to many other blood clot patients’ who find themselves feeling lost, anxious or confused amid a startling diagnosis.

Eventually, Leslie became more involved in NBCA and today she serves as Volunteer President of the organization. She has played a transformative role at the organization, bringing a holistic approach to support patients affected by blood clots, beyond their initial treatment. Recognizing that gaps exist when patients leave the hospital, Leslie has worked to address the full patient experience, from recovery to mental health.

She is also passionate about expanding the visibility and reach of the organizations—not just within the thrombosis community, but with other organizations within the healthcare community.

“When I came to NBCA, I was struck by how dedicated everyone was, but we live in the VTE bubble,” she recalls. “We need to educate everyone outside of the bubble.”

Her initiatives, like the newly launched NBCA’s Sports and Wellness Institute, promote movement and exercise as essential components of recovery and well-being. Additionally, her focus on mental health stems from a common concern she hears from patients: the overwhelming anxiety about recurring blood clots.

For World Thrombosis Day 2024, NBCA organized its Fifth Annual Fun Run, encouraging participants to complete a pre-determined walking or running course in celebration of the campaign and its mission.

Galvanizing a community of advocates

To empower patients, Leslie and her team created a new patient resource guide, grounded in her personal experiences and insights from other survivors. This guide was written “by patients, for patients,” she noted, aiming to help people navigate life after a VTE diagnosis with practical advice and reassurance.

Leslie emphasized the importance of community in the healing process and has expanded outreach efforts by establishing the NBCA’s inaugural Thrombassador Program, a group of more than 120 patient advocates from 47 states in the U.S. who share their stories to raise awareness.

Through this program, trained volunteers spread awareness about blood clots in their communities, helping to close the gap in patient education and support.

“They’re as important as the clinical side because they share their stories, and that resonates with people,” she explained, “They carry the mission forward for us.”

In addition to her patient-centered programs, Leslie has increased NBCA’s presence in public affairs, working with policymakers in Washington, D.C., to drive awareness and advocate for more research funding.

“We’re changing history – we’re changing the trajectory here. We deserve funding,” she says.

She notes that many of NBCA’s programs can be mirrored by other organizations across the world. For example, organizations in other countries can recreate the NBCA Thrombassador program in their own community to multiply patient engagement and support worldwide.

With her dedication to uniting clinicians and patients, Leslie is paving the way for standardized care and global awareness.

“Clinicians and patients need to work together. I think this is how we will make a difference in the world,” she says. “We’re all working toward our common goals, so let’s work together.”

To learn more about the NBCA and get involved, visit www.stoptheclot.org.