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Supporting those affected by Alstrom Syndrome- photographs of five children with Alstrom Syndrome

Alström Syndrome is a very rare, hereditary genetic disorder first described by C.H. Alström in Sweden in 1959. Since then, there have been only 266 cases reported in the medical literature. We currently have identified more than 500 individuals with Alström Syndrome in forty six different countries. Alström Syndrome can affect people of all nationalities, ethnic groups, and races.

Alström Syndrome is progressive. The first sign observed in infants is usually extreme light sensitivity (photophobia) and a wobbling of the eyes (nystagmus). Another of the first signs MAY be dilated cardiomyopathy and congestive heart failure in infants under 1 year of age. Children rapidly gain weight during their first year and become obese as young children. Later, multiple organ systems in the body can be affected resulting in blindness, hearing impairment, type 2 diabetes, heart failure, liver disease, urological dysfunction, pulmonary fibrosis, and renal failure. For additional information see Clinical Features and Gene Reviews.