EndoRISE raises awareness among school nurses in Meriden about endometriosis

Representatives from The Jackson Laboratory and UConn Health visited the Meriden Public Health department to share information and resources about this often-overlooked condition.

Endometriosis is a complicated disease that affects 1 in 10 women. It can produce multiple, seemingly unrelated, symptoms, treatments are very limited, and patients often don't receive a diagnosis for years after symptoms first appear. EndoRISE, a state-supported initiative led by researchers at The Jackson Laboratory (JAX) and healthcare providers at UConn Health, aims to improve outcomes for those with this debilitating condition. And the first steps are awareness and education.

Representatives from the EndoRISE team visited a group of school nurses in Meriden on Nov. 5 to deliver a presentation on endometriosis and the EndoRISE program. The goal was to educate these healthcare providers about this surprisingly common disease, which affects millions but is often overlooked.

Jasmina Kuljancic, program manager for EndoRISE and at The Jackson Laboratory, and Dr. Danielle Luciano, professor of obstetrics and gynecology at UConn Health and co-director of EndoRISE, led the discussion. They emphasized the critical role school nurses play in identifying and supporting students who may be suffering from endometriosis.

Kuljancic opened the session by outlining EndoRISE's mission. The initiative, officially launched in 2023, aims to improve health outcomes for those with endometriosis in Connecticut and beyond by advancing endometriosis research, providing patient support, and continuing education outreach. Their multifaceted approach includes the creation of the CT Data and Biorepository, a diverse collection of data and specimens housed at JAX to support research and clinical collaborations. Additionally, they focus on educating healthcare providers, students, and frontline professionals about endometriosis diagnosis and best practices, while serving as a centralized resource for public awareness. The group's advocacy work, and JAX's endometriosis research, has been featured on Connecticut Public Radio, and in Science, New Scientist and other publications.

"We're here today to see how we can work together to be a better resource for nurses throughout the state," Kuljancic said at the event.

Dr. Luciano began her presentation with a simple yet revealing question: "Does anyone know what endometriosis is?"

Only a few hands were raised, highlighting the need for programs like EndoRISE. Luciano explained that endometriosis is a systemic disease, causing chronic pain, severe menstrual cramps, and other symptoms ranging from gastro-intestinal problems to anxiety and depression, which can result from experiencing a chronic medical issue. The condition affects approximately 200 million individuals worldwide, with many experiencing a diagnostic delay of 7-10 years.

"Treating endometriosis is a team sport," Luciano remarked, underscoring the necessity of a multidisciplinary approach. She highlighted the crucial role school nurses can play in recognizing symptoms early, potentially transforming the lives of students who might otherwise suffer in silence. If endometriosis patients miss school due to period pain, she said, just think of the opportunities they may miss down the line, from college acceptances to internships - and more.

After, Luciano and Kuljancic opened the floor up for questions, which included pragmatic ones about the use of over-the-counter medications like Advil and Tylenol to control symptoms, to larger topics like how to bring families into important conversations about possible treatment plans.

"You all are the first line," Luciano said to the group, acknowledging the nurses' proximity to students and their unique position to make a difference.

Luciano launched EndoRISE with Elise Courtois, the director of the single-cell biology lab at JAX, where the CT Data and Biorepository is located. Together, with Kuljancic, they work with State of Connecticut legislators to promote endometriosis research, education, and awareness, and to advocate for increased funding to combat this systemic disease.

The event was a powerful reminder of the importance of education and collaboration in tackling this often-misunderstood disease. By empowering school nurses with knowledge and resources, EndoRISE is actively working for better diagnosis, treatment - and ultimately, better lives - for those affected by endometriosis.