Karen Doniger discovered she had adenomyosis after her hysterectomy two years ago. Now, her two oldest daughters face intense period pain, and her youngest, 19-year-old Katherine, struggles even more. Katherine has endometriosis, a condition that has led her to endure three surgeries, including one that removed 53 lesions and an endometrioma.
“I’m just a mom fighting for her daughter,” Karen said. This fight brought her a new opportunity: she was recently appointed to the Board of Directors for the Endometriosis Foundation of America (EndoFound).
“Advocating for your child with this disease feels like screaming into a void,” she shared. Yet, she’s resolved to make a difference.
Living in Greenwich, Connecticut, Karen has a rich educational background. She has a Bachelor of Arts from Princeton University and a law degree from Columbia Law School. Although a trained lawyer, she also has experience in the nonprofit sector as both a board member and volunteer.
Since her appointment just two months ago, Karen has jumped in with both feet. She has met with donors at the Seckin Endometriosis Research Center and talked with the EndoFound team to learn how she can help them.
“I want to see where we can fill gaps,” Karen said. “There’s a lot of room to grow.” She understands the importance of educating the public and medical professionals about endometriosis.
Katherine’s journey illustrates the challenges facing patients. Many young girls are dismissed by healthcare providers who might not recognize the symptoms. For instance, Katherine self-diagnosed after reading about endometriosis in a novel, which shows how lack of awareness can lead to struggles in getting proper care.
Recent research highlights that nearly 1 in 10 women of reproductive age suffer from endometriosis, yet it often takes years for many to receive an accurate diagnosis. This sheds light on the urgency of raising awareness and improving education around the disease.
Karen is determined to work hard to support EndoFound’s mission. “Everyone connected to the foundation has done so much for women dealing with this condition,” she said. “I hope to contribute in meaningful ways.”
Through her advocacy, she aims to amplify the voices of those affected by endometriosis, ensuring that more women receive the support they deserve.
For more information on endometriosis and related resources, visit the Endometriosis Foundation of America here.
