Living with Stone Man Syndrome: A BYU student shares her story

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BYU student Danielle Coyne talks about living with FOP, a rare genetic disorder where the body turns muscle into bone. (Photo by Daniela Bermea)
It was her toes that gave her away.

Danielle Coyne’s parents took her to the doctor when she was 5-years-old for a routine checkup.

The doctor had noticed some abnormalities in her bone structure and wanted some extra tests. While they were there, the X-ray technician noticed the little girl’s short, crooked toes, something her parents had never thought twice about.

The technician said those toes were the first clue to fibrodysplasia ossificans progressiva disorder, also known as Stone Man Syndrome. She informed the parents that their daughter likely had a rare disorder wherein her muscles would slowly, inevitably, start turning into bone.

“She left us reeling from it,” said Coyne’s mother. “We were devastated. She said Danielle would be frozen up. We left there pretty much in a daze.”

Research on the syndrome was scant at the time. “They just told my parents, ‘She could have it. She could not. There’s really nothing we can do,'” said Coyne, now a 22-year-old BYU student studying public health.

The International Fibrodysplasia Ossificans Progressiva Association says there are only 3,300 people living with FOP. Coyne is one of them, but she feels blessed.

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Coyne loves to watch movies with friends, read, and play the piano. She also loves to cook. She said if her career in Public Health didn’t work out, she would open up her own bakery. (Photo by Daniela Bermea)
While many FOP patients begin growing a second skeleton at an early age, effectively immobilizing them, Coyne can still walk, talk, eat, write, drive and do almost anything anyone else can do on her own. She loves to cook, watch movies with friends and read Western romance novels with her mom.

“This is as wide as I can open it,” she said, opening her mouth about an inch. “And I pretty much have full mobility, except for my leg.” So far, her leg and jaw are the only areas where her body has grown extra bone, restricting normal movement.

“I lived a normal childhood,” she said. “But now that I look back, I do realize that my parents did keep me from doing certain things. They were trying to protect me while still letting me be normal.”But these manifestations of the disorder didn’t come out until later in her life. After the doctor’s visit when she was 5, Coyne’s life didn’t change much.

It was something constantly in her parents’ thoughts.

“I would put her in the bathtub and look at her back, because I remember seeing pictures of lumps in backs,” her mom said.

Many FOP patients begin to see signs of the disorder when they are young, in the form of lumps of bone that grow on their backs.

Coyne said FOP is like a “hibernating bear,” according to her doctor, FOP specialist Dr. Frederick S. Kaplan. The problem gene can be inactive for some time, but once it’s awake, it’s awake, Coyne said.

The disorder didn’t manifest itself until right before she started high school. She was playing basketball when she went in for a layup and came down funny on her hip. When it didn’t get better, she went to the doctor for some tests.

Everything came out normal at first. But bone takes time to grow. Three months later, the doctor found a piece of extra bone the size of a thumb connecting her femur to her hipbone.

The doctor, who had never heard of FOP before, wanted to go in and do surgery immediately.

“I was all for it,” Coyne said. “I was 14, and I was like, I don’t know what this is, yeah take it out.”

Kaplan said surgery could have been the worst decision for the situation. Bodies with FOP work differently; the body grows more bone in its place in order to heal. Even surgery is trauma to the body and could result in further bone growth.

Coyne said her grief process once being diagnosed included denial, anger and sadness. The new bone in her hip stopped growing, but it left her with a limp and an inability to walk long distances or stand for a long time. Playing basketball was out of the question. She often had flare-ups, instances that would leave her leg flaming with pain and made it nearly impossible to do anything, even sleep.

It was under these circumstances that she started high school.

“You know how hard high school is,” she said. “I kind of had a bad attitude in the beginning. I was really sad about it and just wanted to be a normal high school kid.”

She said she was already shy and tried to go about her days “under the radar.” In her mind, there was only one word: cure. She would go to college when they found a cure. She would put her entire life on hold until she was cured. “I’ll just live my life when I can be normal again,” she decided.

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Coyne holds the plaque that her mom gave her, which helps her to live every day with faith. On her right hand is a ring that used to be her mom’s. She said her mom is a great example and support to her and is one of her best friends. (Photo by Daniela Bermea)
But anyone who knows Coyne as a happy, positive, successful person would agree that something must have changed her outlook.

Her turning point came about a year after she was diagnosed. Her mom, who has always been her best friend and a strong support, gave her a plaque with a quote from Elder Neal A. Maxwell that reads: “Faith in God includes faith in His timing.”

“After my mom brought me that plaque, I realized I’m very lucky and fortunate that even though I have to have it, it’s not as bad as it could be,” she said. “I just try to keep that in mind. I just want to do as much as I can while I can, because I don’t know when there is going to be a cure.”

The disease struck again a few years later. Coyne started to notice her jaw closing.

She said this started to happen after she yawned once and heard her jaw pop, and then went to the dentist and had to sit with her mouth open for over an hour.

“It is kind of freaky when your jaw starts closing up,” she said. “But you can’t live in fear.”

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(Courtesy of Beau Palmer)

Coyne also found out the disorder might prevent her from having children. Her mother said this has probably been the most difficult part of the disorder for her to cope with. Coyen’s outlook on life, however, remains positive.

“It’s a blessing and a trial. A lot of things I do I wouldn’t be doing if I didn’t have (FOP),” she said. “And you get a lot of public speaking, and I am horrible at public speaking, so I am getting a lot of practice at it,” she said with a laugh.

She said the optimism and support of her family and her faith in the gospel is what gets her through every day with such optimism.

“Knowing that faith in God includes faith in His timing,” she said. “I try to live each day by that. Heavenly Father knows when you need certain blessings, and I try to have faith that when the time is right it will happen.”

Coyne will graduate from BYU next year with a bachelor’s degree in public health. She hopes to spend her life spreading awareness and raising funding for rare diseases, to help others who are in situations like hers.

“I feel like I can be an example to others and be an inspiration, and help others through their trials.”

On March 1 at 10 a.m., the BYU neuroscience and pre-med clubs are teaming up with students from the University of Utah to put on a 5K to raise awareness for FOP. The race will loop around BYU campus, beginning at the Smith Fieldhouse. All donations will go to the IFOPA, the official researching organization for FOP. The cost is $15 for students and $20 for others. Participants can sign up onsite the morning of the race, or online at qr.net/cureFOP.

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