Perseverance Gives Acromegaly Patient A New Lease on Life

Irina Kofman earned her American Dream by defying the odds over and over again.

Her unstoppable determination, coupled with enduring support from her family and her Cedars-Sinai medical team, has enabled Kofman, 35, to thrive despite a lifetime of dealing with acromegaly, a rare and painful disorder in which the pituitary gland produces too much growth hormone, causing enlargement of the body, especially the hands, feet and face.

“Irina has surmounted all obstacles and shown us that it can be done with elegance, dedication and a lot of true grit,” said Shlomo Melmed, MB, ChB, Kofman’s longtime physician who notes that she has been a refugee, mother, wife and Fortune 500 executive – all while fighting for her health.

“She was determined to succeed in life, and she has certainly achieved that level of personal and professional success,” added Melmed, an endocrinologist and prominent expert in acromegaly who is also Cedars-Sinai's executive vice president of Academic Affairs and dean of the Medical Faculty.

And today, for the first time in her life, Kofman can add “cured” to her list of achievements, thanks to a surgical procedure performed by Adam Mamelak, MD, professor of Neurosurgery.

“Life now feels renewed, like there isn’t an impending expiration date tied to me,” said Kofman, a director of artificial intelligence at Facebook, Inc., who lives in northern California, with her husband and 11-year-old son. “I may grow old now. That’s not something I could have contemplated before my surgery.” 

A New Beginning and a Diagnosis

When Kofman was five, her family—including her mother, father and older sister—fled the then-named Union of Soviet Socialist Republics, seeking religious freedom. They began a new life in New York and Kofman enrolled in kindergarten.

“I was a head taller than everyone in my class,” recalls Kofman, who notes she was born right after the Chernobyl nuclear disaster in the Ukraine. “The next school year, a family friend and pediatrician suggested my parents get my hormone levels checked because of my height.”

At age 7, Kofman received a firm diagnosis of acromegaly and learned that she had a benign tumor on her pituitary gland, resulting in an influx of hormones. Over the next decade, Kofman’s father—totally undeterred—committed himself to ensuring that his daughter received the best medical care possible, including advocating for her to receive new treatments.

Even with her debilitating symptoms like lack of energy, joint pain, increased sweating, weakness in her arms and lungs and crushing headaches, Kofman remained steadfast to academics and her athletic passion: tennis. Despite her chronic illness, Kofman played the sport competitively until she left for college at UCLA.

“I played just like everyone else, with the exception of always having my father nearby wearing a fanny pack filled with the shots he had to administer between matches,” said Kofman.

Once in California, Kofman sought care from Melmed, one of the world's leading pituitary experts, and colleague Vivien Bonert, MD, clinical director of the Pituitary Center at Cedars-Sinai.

Between frequent doctors’ appointments, demanding college courses, working full-time to support herself, and a tennis match when she could, Kofman met her future husband. The two were married just before Kofman graduated from UCLA—which she accomplished in just three years—and then moved to the Bay Area for job opportunities.

“My team at Cedars-Sinai became my family, my people,” said Kofman. “When I first met them, I shared photos from my high school prom. Years later, I called these same people to share the miraculous news that I was pregnant.”

Miraculous, Kofman says, because everyone said it would be impossible to become pregnant and carry a healthy baby. Although Kofman saw a local team for her maternity care, she stayed in touch with Bonert, who helped make some of the key decisions throughout her pregnancy.

“My son was born perfectly healthy,” said Kofman. “I owe my baby to the remarkable care we received at Cedars-Sinai."  

In the decade following her pregnancy, Kofman’s symptoms of acromegaly increasingly worsened and she developed uncontrolled diabetes. When her health was at one of its lowest points, Kofman learned she was pregnant. Her care team admitted her to the maternity area of the hospital for several nights to control her diabetes and save the pregnancy.

After several days in the hospital, Kofman was released, and her unborn baby had a healthy heartbeat. But the following week at an ultrasound appointment, she found out she miscarried.

The heartbreaking miscarriage further fueled Kofman’s and her husband's desire to have another child. She began fertility treatments in the midst of the COVID-19 pandemic but miscarried again.

The second miscarriage, coupled with the onset of heart health issues, caused Kofman to realize that surgical removal of her pituitary tumor was her only hope for better health.

A Surgical Decision

“I had put off surgery for so many reasons, for so long,” said Kofman. “The surgeons I had seen growing up were never comfortable removing the tumor. And, as I got older, I was fearful of how the surgery would affect my fertility. Then I became so busy with life, work and raising my son, that I kept continuously putting it off. The last miscarriage sent a message that my time for surgery was now.”

Kofman met with several neurosurgeons across the nation before selecting Mamelak as her trusted specialist.

“There was a comfort level with him,” said Kofman of Mamelak. “He was the only surgeon who didn’t treat me as a case number, but instead, a person with a story. Selecting him gave me a glimmer of hope and control for my future.”

“With acromegaly, our surgical goal is always a cure,” said Mamelak, co-director of the Pituitary Center and director of the Functional Neurosurgery Program. “But that’s only possible if you remove 100 percent of the tumor.”

To do so, Mamelak says experience is key. The Cedars-Sinai Pituitary Center is one of the busiest centers in the United States with more than 20 years’ experience performing this complex procedure.

“Immediately after surgery, Irina no longer needed insulin and her diabetes diminished,” said Mamelak. “And even more incredible, just weeks after surgery, her hormone levels were normal for the first time in her life. She was cured, which is the most rewarding thing you can ask for as a doctor.”

Today, nearly four months after her successful surgery, Kofman remains off insulin and is focused on having another baby. Her renewed health is allowing her to play tennis pain free, better concentrate on her work and allowing her to spend time with those most important to her—her family.

“My parents sacrificed every fiber of their lives to give me the best medical care and chance at creating a family of my own,” said Kofman. “Having my parents live nearby, my health back and the most incredible husband and son is an absolute dream. Life has never been better.”