Danbury man has extra bones growing in his body

Dan Aziere suffers from a rare disease called multiple hereditary exostosis, which causes excess bones to grow in the body. He's already had 42 operations to remove about 15 excess bones. Thursday, May 20, 2010 less Dan Aziere suffers from a rare disease called multiple hereditary exostosis, which causes excess bones to grow in the body. He's already had 42 operations to remove about 15 excess bones. Thursday, May 20, ... more Photo: Scott Mullin Photo: Scott Mullin Image 1 of / 3 Caption Close Danbury man has extra bones growing in his body 1 / 3 Back to Gallery

By the time we reach middle school, one of the facts we learn in science class is that the average adult has 206 bones, give or take a few.

Yet Danbury resident Dan Aziere has more than that in his body.

A lot more.

He estimates he has about 50 extra bones.

"They are around every joint, and there are a lot around my rib cage," said Aziere, 41, who works as a senior claims adjuster for Geico in Danbury.

Aziere suffers from multiple hereditary exostoses, a rare genetic disorder in which benign tumors grow from the growth plate or the surface of bones throughout the body.

Since the age of 5, he has undergone 19 surgeries to remove 42 bones. He has had extra bones in his leg, shoulder, ankles, knees, hips, arms, wrists, back, chest, and almost all his fingers.

They've ranged in size from as small as a pencil eraser to as large as 4 inches long by 2 inches wide by 1 inch high.

MHE is on Aziere's father's mother's side of the family. His father, Richard, has it, but he has a much milder form of it than Dan does.

Of Aziere's three siblings, only his late brother Gary had the condition.

Two of Aziere's three children have MHE -- 11-year-old Alex and 6-year-old Jessica. To date, the disorder hasn't caused them any problems.

When Aziere was a teenager, due to bone growth in his calf, he had a surgery that left him with paralysis and a drop-foot.

"The doctor accidentally cut the sensory nerves, so I can't feel the top half of my leg and the top of my foot from the knee down," Aziere said.

After the surgery, he became very depressed.

"I didn't want to talk to anyone or be with anyone. I was wondering why God had let this happen to me," he said. "Then I woke up one day and realized that (feeling this way) is silly. I'm alive."

From that point on, he has maintained a positive attitude about his condition, and he tries to project that attitude onto others.

"In my line of work, the people I see were just involved in a car accident and are very upset. I tell them to be thankful that they are here to complain about their problem. Whenever I tell them about my condition, by the time they leave they tell me that I have completely changed their outlook," he said.

Aziere's physician, Dr. John Dunleavy, orthopedic surgeon at Danbury Orthopedic Associates on White Street, said, "the prevalence of MHE is between one and two people out of every 100,000. I have seen less than five cases of MHE over the last seven or eight years."

Dunleavy explained that while MHE can be uncomfortable, the bone masses themselves aren't painful.

"They can cause pain when they encroach upon surrounding tissues in the body," he said.

"Over 1,600 families in 57 countries around the world are registered with us as having MHE. Fourteen of those families live in Connecticut," said Chele Zelina, president of the MHE Coalition in Ohio, a nonprofit organization formed in 2000 to provide support and information to people living with MHE and their loved ones.

She added that "scientists have found that people with MHE are missing a coating on a chromosome. Research is now taking place around the world to find a cure for this condition."

"My motto in life is that things can always be worse," said Aziere, who has no planned surgeries at this time.

"I can pretty much do anything that anyone else can do except barefoot water-ski. While I have snow skied and water-skied, I had never barefoot water-skied before, so it really doesn't matter to me that I can't do it now," he chuckled.

While it's been helpful to know there are other people in the world who also have MHE, Aziere said his family -- which includes his wife, Barbara, and his son, Nathan, 9 -- is most important in helping him get through it.

"As long as I have other people around me that care for me, I can handle anything," he said.