When you were a kid, chances are your parents told you to drink milk to keep your bones strong. But for Emily Roach, 26, from Danvers, MA, drinking all the milk in the world wouldn't have made a difference. In 2003, at 4-years old, Emily was diagnosed with a condition called fibrous dysplasia, a disease that attacks bone tissue, leaving her bones prone to spongy, weak spots and fractures. Fibrous dysplasia is a chronic disease with no known cure.
Not surprisingly, Emily is no stranger to the operating room. At age 7, she had two hip surgeries at Tufts Medical Center to prevent fractures. Five years later, she underwent a double knee surgery at Tufts MC to have stabilizing plates inserted in both knees. She was diagnosed with scoliosis as a pre-teen (3 separate curves in her spine), and when a back brace did not correct the problem, she returned to Tufts Medical Center for a spinal fusion and a rod placed in her back at 14-years old.
In her junior year of high school, Emily began having headaches on the right side of her head. Imaging revealed aneurysmal bone cysts (blood-filled, vascular benign tumors) in her skull, a complication that affects only about five percent of people with fibrous dysplasia. Carl Heilman, MD, Chief of Neurosurgery at Tufts Medical Center, removed the bone cysts in 2015. But in July 2023, the right-side headaches returned, and Dr. Heilman removed two more bone cysts in separate cranioplasty procedures in August 2023.
"It's very uncommon to find these type of cysts in the skull. They are usually found in the spine," said Dr. Heilman. "But Emily is just really tough and she keeps right on going."
Altogether, Emily has had seven different surgeries, all at Tufts MC, as a result of her fibrous dysplasia. She has also broken her right humerus three times. Yet after each procedure, she recovered well and was able to return to normal life.
Incredibly, while in high school, Emily picked up cross country and track and found she had a passion for running. She continued to run cross country in college. And now that she is fully recovered from her latest aneurysmal bone cyst surgeries, Emily has her sights set on a bigger goal in 2024: the 128th Boston Marathon – her first-ever 26.2-mile race.
"I've always wanted to run a marathon, particularly the Boston Marathon," said Emily. "I fully expect that more issues will come up during my life that will require surgical intervention, and I have thought about the impact of the Marathon on my bones. But for right now, I am healthy, feeling good and incredibly motivated."
For Emily, it was a no-brainer to run the Marathon with Team Tufts MC to give back for everything the hospital has done for her over the past 20+ years—and her mother as well. In 2019, Emily's mom, Mary, a nurse for more than 30 years at Tufts MC, was diagnosed with rectal cancer after a routine colonoscopy. After a difficult year of surgery, radiation and chemotherapy, Mary is now cancer free and continues to work at Tufts MC in the post-anesthesia care unit.
"Tufts Medical Center has been a tremendous part of my life and my mother's life," said Emily. "Running the Boston Marathon for Team Tufts MC and giving back to the hospital that has meant so much to me and my family is a privilege and honor."
Emily knows that she has to be careful with her training and preparation for the Boston Marathon. She takes daily calcium and vitamin D supplements to help keep her bones as strong as possible, and she stays vigilant for any warning signs and symptoms of potential problems.
"I have never seen a patient with a condition like this run a marathon," said Dr. Heilman. "I have removed brain tumors from a few patients who have gone on to impressive athletic accomplishments, but in those cases, the tumor is gone and doesn't come back. Emily still has fibrous dysplasia and will for the rest of her life. She is well-aware that the fractures and bone cysts could come back at any time. But she has a great attitude and doesn't let anything stop her from reaching her goals."
"I feel so thankful to be healthy right now and have this opportunity to chase my dreams," said Emily. "I am excited to be on this journey and tackle a new challenge. It really is fulfilling for me."
