Lexington mother–daughter team pushes for faster endometriosis diagnosis and better care in Mass.

Endometriosis is a chronic condition in which tissue-- like the uterine lining-- grows outside the uterus, causing inflammation, scarring, and significant pain. It affects an estimated 1 in 10 women in the United States.

Despite its prevalence, diagnosis is often delayed. Studies show women can wait an average of 8 to 12 years before receiving confirmation of the disease. A Massachusetts mother–daughter team is working to change that.

Melanie Tanionos and Nicole Tanionos, founders of the Endometriosis Alliance of Massachusetts, discussed how their personal experiences with the condition led them to create a statewide advocacy organization. Their work focuses on improving recognition of symptoms, supporting patients, and increasing opportunities for early intervention.

In addition to outreach, the pair is advocating for legislation designed to create awareness through creating a task force of stakeholders in the commonwealth that would “develop and annually update a summary of the advances made in research on and treatment and diagnosis of endometriosis; (ii) develop and annually update a summary of the advances made in access to care for individuals with a diagnosis of endometriosis; (iii) monitor endometriosis research, services and support activities across the commonwealth, including coordination of the commonwealth’s activities and programs with respect to endometriosis; (iv) develop and annually update a comprehensive strategic plan to improve health outcomes for individuals with a diagnosis of endometriosis, including recommendations to: (1) advance research on endometriosis; (2) improve public awareness and recognition of endometriosis; (3) improve health care delivery for individuals with a diagnosis of endometriosis; (4) improve the early and accurate diagnosis of endometriosis; and (5) systematically advance the full spectrum of biomedical research on endometriosis; and (v) develop and annually update the progress made in implementing such comprehensive strategic plan.”

For more information, click here: https://www.endoteam.org/

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