‘Our daughter, Aníta Sól, has Prader Willi syndrome and some other disabilities. She is 18 years old and the oldest of 3 sisters. She is strong minded (controlive even:), loveing and focused on her interests. Her disability effects her cognitive thinking, talk, movement and more. She can walk for short distances an uses a wheelchair or an electrical shuttle to move around outdoors.
We would like to participate in your project because we are very interested in seeing our daughter and her life through the lens and from another perspective’.
Solrun Ragnars and Sveinn Bjarnason
Prader-Willi syndrome is a complex genetic condition that affects many parts of the body. In infancy, this condition is characterized by weak muscle tone (hypotonia), feeding difficulties, poor growth, and delayed development. Beginning in childhood, affected individuals develop an insatiable appetite, which leads to chronic overeating (hyperphagia) and obesity. Some people with Prader-Willi syndrome, particularly those with obesity, also develop type 2 diabetes mellitus (the most common form of diabetes).
People with Prader-Willi syndrome typically have mild to moderate intellectual impairment and learning disabilities. Behavioral problems are common, including temper outbursts, stubbornness, and compulsive behavior such as picking at the skin. Sleep abnormalities can also occur.