Pimples are a common hallmark of adolescence, but hardly a cause of concern for most teenagers, outside the typical jab to self esteem. But for 14-year-old Emanuel Zayas, what appeared at first to be a zit turned out to be a life-threatening tumor. The benign mass is larger than a basketball, according to USA Today, but hinders his breathing and could even fracture Zayas’s neck.
Zayas has polyostotic fibrous dysplasia. This rare and serious condition is a skeletal problem that occurs when the cells that form bones don’t mature properly. Instead, they make too much connective tissue. As a result, parts of the patient’s bone, otherwise healthy, are filled with the fibrous tissue, explains the National Institutes of Health. This growth causes pain and many other complications, such as improperly shaped bones and fractures. When only one bone is affected, the condition is known as monostotic; multiple bones make the disorder polyostotic. According to a case report published in 2009, about 20 to 30 percent of cases are polyostotic.
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Typically, fractures occur when the condition impacts longer bones, like the arms or legs. But when fibrous dysplasia is found in the skull, patients can experience changes in their face, as well as pain. In extreme cases, loss of hearing or vision can occur.
The most common bones impacted are the skull, face, legs, upper arms, pelvis and ribs, according to the NIH. Usually the impacted bones are on the same side of the body, and the disease does not spread from an impacted bone to other healthy bones, as happens with cancer.
Anyone can get the disease, though it usually occurs in children and young adults and is very rare. The condition is triggered by a mutation in a gene that encodes the formation of bones and tissues. However, the mutation is not inherited and so parents cannot pass on fibrous dysplasia to their children.
Currently, there is no cure for the disease. Treatment usually includes medication to help with pain as well as surgery to fix broken or misshapen bones and prevent fractures.
Zayas, originally from Cuba, is currently in Miami, Florida, on a medical visa. He will undergo surgery on January 12 at the University of Miami’s Jackson Memorial Holtz Children’s Hospital, according to USA Today. Doctors hope to remove the growth in its entirety.
Although the medical team is performing the surgery pro bono, there is currently a fundraising effort to pay for time in the hospital, medical supplies and medication, reported the Miami Herald. Doctors estimate the surgery will cost more than $200,000. Nonprofit organization IKF Wonderfund, a program by the Jackson Health Foundation in Florida, has started a campaign to raise funds for the boy’s surgery, located online at jacksonhealthfoundation.org/emanuel.
Zayas’s surgeon, Dr. Robert Marx of the University of Miami Health System, said the operation will be life-changing. Notably, the teen will finally be able to enjoy basic functions like seeing his parents. Currently, the mass blocks most of his vision.
“He’ll also be able to breathe a whole lot better,” Marx said. “He’ll be able to eat a whole lot better.”