When Gov. Deval Patrick signed a proclamation making June 30, 2014, Arthrogryposis Awareness Day in Massachusetts, Johnny Rosano and his family chalked it up as a huge victory for people afflicted with Arthrogryposis Multiplex Congenita.
Rosano, 25, was born with the rare condition that develops in utero and occurs in 1 in 3,000 live births. While its cause is not definitively known, it’s believed to be related to the developing fetus not moving properly in the womb.
“People with AMC are born with multiple joint contractures, or multiple joints that are stuck in one position and have very little flexibility, resulting in low muscle tone,” said Rosano, who lives in Methuen with his family. “I was also born with clubfoot and scoliosis. I had scoliosis correction back in 2003, which resulted in an infection and a year of being in and out of the hospital to clear up the infection and other issues that occurred as a result.”
There is no cure for AMC. Stretching, various therapies and some surgical interventions can help improve independence levels and quality of life.
The Rosanos didn’t know much about AMC when Johnny was growing up because awareness is low. There were few resources to help them as he visited countless specialty doctors and went through about 30 operations ranging from heel cord releases to scoliosis correction and de-webbing of his fingers.
“Aside from that, I went on with life as normal as possible,” Rosano said. “I graduated high school with honors, went on to Merrimack College where I graduated with a double major in psychology and criminology with the aide of scholarships, including the Christian Herter Scholarship which is awarded to only 25 students in the state each year.”
For the 5th Annual AMC Awareness Day on June 30, families across the world wore the color blue to honor and support those with the condition and to raise public awareness about it. The day is sponsored by Arthrogryposis Multiplex Congenita Support, Inc., an organization that works to connect individuals with AMC and their families across the globe and provide them with resources. Rosano has been both a member of the organization and a volunteer.