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New endometriosis research center announced on Long Island

March marks Endometriosis Awareness Month
March marks Endometriosis Awareness Month 03:19

A new endometriosis research center was announced Thursday on Long Island. 

Medical experts say it is like no other in the world, exploring the underfunded and under-researched condition. 

A ribbon cutting was held to announce the creation of the Seckin Endometriosis Center for Women's Health at Cold Spring Harbor Laboratory. The program is a partnership between CSHL and the Endometriosis Foundation of America. 

The milestone generated raw emotions for Alexis Joel, the wife of legendary rocker Billy Joel, who was on hand for the announcement. She spoke candidly about how doctors initially dismissed her endometriosis at first. 

"I had years of debilitating pain," she said. "The pain was cyclical and it escalated. I was begging doctors to help me." 

What is endometriosis?

Endometriosis is when tissue similar to the interior lining of the uterus grows outside of it, where it doesn't belong. Symptoms can include heavy, painful periods, pelvic pain between periods, and pain during sex. Symptoms can be different for everyone, but doctors say severe pain often aligns with the menstrual cycle. Misdiagnosis of the condition can be common. 

It's estimated 10-20% of all women and girls of reproductive age have it, equating to almost 200 million people worldwide. 

"This is a moment I never imagined, certainly never dreamt when I began caring for women whose symptoms were routinely dismissed," said Dr. Tamer Seckin, founder of the Endometriosis Foundation of America. The new center, dedicated solely to the condition, is named after him. 

"We are in a stronger position than any endometriosis program in the world," he added. 

A $20 million commitment

The center has collected and will be studying more than 30,000 specimens. Alexis Joel donated some of hers. 

Officials say the new research center is historic and will be transformative. Leemor Joshua-Tor, director of research at Cold Spring Harbor Laboratory, said the center will explore not just the cause, but how to detect it faster. 

"So we can get a much early diagnosis of it, accurate, much better treatments and maybe even prevention," Joshua-Tor said. 

The EndoFund has committed $10 million to the lab to establish the research center, which is being matched, for a total commitment of $20 million. 

There's no cure for endometriosis, but certain medications or surgical procedures can help treat it. While surgery can relieve symptoms, endometriosis can return.   

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