July 2nd, 2012
07:35 AM ET
Arthrogryposis has presented many challenges to Alyssa Jadyn Hagstrom. At just 8 years old, the condition has left her with no use of her legs and arms, and limited use of her fingers.
Alyssa is the subject of photographer Jennifer Kaczmarek’s exhibition called “Love for Alyssa,” which aims to use photography, video and an online blog to raise funds for Alyssa’s and others’ medical needs. The project has put a spotlight on the little-known condition.
Arthrogryposis causes limited range of motion in children’s joints and affects one in 3,000 infants, according to Donald Bae, an orthopedic surgeon at Boston Children’s Hospital.
Individuals affected by these conditions could experience internally rotated shoulders, arms positioned against the side of the body, wrists that are bent down or flexed, stiff fingers and thumbs, stiff and contracted knees and abnormalities in the development of the hips and position and form of the feet.
Those affected are typically of normal cognitive ability and intelligence, Bae says.
“Oftentimes, they are kids who are really bright, have wonderful personalities, are really smart and adaptive, but they have problems because their joints just don’t move,” Bae says.
Researchers don’t know definitively what causes these conditions, but arthrogryposis multiplex congenita is thought to be a sporadic event of genetic mutation in certain identified genes. It is not thought to be hereditary.
Several other causes could contribute to arthrogryposis, according to Susan Apkon, a rehabilitation physician who works in the arthrogryposis clinic at Seattle Children’s Hospital. Besides genetic problems, underlying neurological problems can cause arthrogryposis; so could a limited amount of space for a fetus to move during pregnancy, like when a mother is carrying twins or triplets.
The condition is apparent at birth, but there can still be challenges in trying to diagnose it prenatally, Bae says. Mothers of children with these conditions will often say they feel little fetal movement during pregnancy.
There is no known cure for arthrogryposis. Individuals who are affected typically have a normal life expectancy, if the condition does not come with confounding factors, such as breathing problems.
Although the condition is commonly associated with children, the symptoms often exist into adulthood. To treat these conditions, physicians and other experts try to restore as much movement as they can to the individuals’ joints to improve their motion and independence, Bae says. This often involves physical therapy and use of splints and surgery.
Children may work with an occupational therapist, Apkon says, to practice skills including the ability to feed themselves, get dressed, write and play.
Check out more information about the photo project "Love For Alyssa" on our CNN Photo Blog.
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