UConn Health and The Jackson Laboratories are leading the way with diagnosing, treating, researching and now teaching about Endometriosis. School nurses are now learning how they can help students with identifying and supporting those with Endometriosis.
The EndoRise team are: government and community relations director for The Jackson Laboratory for Genomic Medicine (JAX) Lisa Roy, co-director and JAX senior research scientist Elise Courtois, PhD, JAX program manager Jasmina Kuljancic, UConn Health OB/GYN Alexis Newmark, MD, UConn Health research coordinator Kayceety Mullaj, and co-director and UConn Health minimally-invasive gynecological surgeon Danielle Luciano, MD, in the Outpatient Pavilion, on Febuary 20, 2025. (Tina Encarnacion/UConn Health Photo)
Those driving by the hospital the past two weeks may have noted the signs lit up in yellow to honor Endometriosis Awareness Month.
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. This complicated disease affects 1 in 10 women with many experiencing a diagnostic delay of 7-10 years.
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.
Dr. Danielle Luciano interim chief of Obstetrics and Gynecology at UConn Health launched EndoRISE with Elise Courtois, Ph.D., the director of the single-cell biology lab at JAX, where the CT Data and Biorepository is located. Together, with Jasmina Kuljancic, program manager for EndoRISE 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.
As part of this initiative, a team of doctors and researchers, including Luciano, Dr. Alexis Newmark, Kuljancic, and Kayceety Mullaj EndoRISE research coordinator, have begun engaging with the community to educate school nurses. These nurses play a vital role in identifying and supporting students who may be experiencing endometriosis. They are also encouraged to conduct in-service training sessions for school staff, particularly athletic trainers, on key topics covered in the program.
When speaking to a group in Meriden last fall, Luciano asked those in the room "who knows what endometriosis is?" Only a few hands were raised.
This type of training is especially important for students like Jerica Leary, a 17-year-old from East Hampton who began experiencing painful symptoms six years ago. Her condition caused her to miss school and extracurricular activities, ultimately leading her to lose her spot on the cheerleading team due to frequent absences from school and practice.
School nurses and staff often misunderstand the disease, dismissing students' pain as mere menstrual cramps and underestimating its severity. In Jerica's case, she was frequently given ibuprofen and ice and sent back to class, despite the intensity of her symptoms.
"Treating endometriosis is a team sport and takes a multidisciplinary approach," said Luciano. "School nurses can play a crucial role 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, just think of the opportunities they may miss down the line, from college acceptances to internships and more."
Research shows that teens with endometriosis are 10 times more likely to miss school than healthy teens. This results in academic difficulties, social isolation, anxiety and depression and low self-esteem. People with endometriosis often face a lack of understanding from those around them. It is also very common for them to have their symptoms dismissed by friends, family, and healthcare providers. They may be told that the severe pain they are experiencing is normal or that they are just being dramatic.
Jerica began with seeing an OB/GYN and was told that her symptoms were normal, and she should go on birth control to alleviate the symptoms. She was determined to find the cause of her pain rather than simply masking it with birth control. Her pain was so severe that it often caused her to vomit or became so intense and sharp that she couldn't move or walk. Searching for answers, she consulted a gastroenterologist, but tests revealed that her gastrointestinal tract was healthy.
She decided to find a new gynecologist and came to UConn Health where she was seen by OBGYN APRN Christine Biolo who referred her to Luciano.
"Dr. Luciano asked my family history and knew right away to look for endometriosis," says Jerica whose mother and grandmother both had the disease.
Last August, Dr. Luciano performed a laparoscopy to accurately diagnose Jerica's endometriosis and successfully removed the affected tissue. Since then, she has been pain-free. While she understands that the condition may return, she is exploring preventive options, including birth control. With a clear diagnosis and relief from her symptoms, Jerica can now focus on enjoying her senior year of high school and preparing for her future studies in political science at the University of Tampa.
Based on the feedback the from the events held with school nurses in Meriden, Stamford and the Connecticut Association of Nurses, the education is making a difference. At a recent training the survey results found:
- Comfort level with recognizing endometriosis went from 13% comfortable pre lecture to 40% comfortable and 20% very comfortable after the lecture.
- Prior to the lecture, 53% felt they did NOT have the appropriate resources to help their students, which dropped down to 20% post lecture.
- 80% were likely to change their practice after the presentation.
These trainings are 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.
If you are concerned about endometriosis you can visit our website
