To help doctors and parents identify a potentially life threatening illness while treatment is still possible, state Rep. Laura Fine, D-Glenview, recently passed a measure expanding newborn screenings to include Adrenoleukodystrophy, commonly known as ALD.
“As advances in medicine continue, we need to make sure that preventative testing is available to children and families across the state,” Rep. Fine said. “Armed early with the knowledge that their child has a disease like ALD, parents can seek new and effective treatments.”
ALD is a genetic disorder that affects 1 in 18,000 people, predominately males. Symptoms for the disease begin between the ages of four and ten years old. The first signs include behavioral and concentration problems and grow worse to include loss of vision, hearing, ability to walk, talk, eat and move, until those that suffer from ALD fall into a vegetative state and ultimately die. Rep. Fine’s legislation adds ALD to the list of diseases that the Department of Public Health screens newborns for before they leave hospitals. New York State added ALD to its list of newborn screening disorders in 2013.
“Every child deserves to have a chance for a happy and healthy life,” Rep. Fine added. “Adding ALD testing to the list of diseases newborns are already screened for will make this a reality for more children.”