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Legislation sponsored by state Rep. Laura Fine, D-Glenview, which will help families get proper medical treatment for their children by requiring that newborns be tested for Adrenoleukodystrophy, commonly known as ALD, awaits the governor’s signature.
“Every parent wants to do everything possible to keep their children safe, but if they do not know their child has a genetic disorder they are not doing what is necessary to help their children stay healthy,” Fine said. “Adding ALD to the list of diseases that newborns are tested for will allow parents and doctors to develop and implement a treatment plan early which is crucial to the survival of this horrible disease.”
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, and the ability to walk, talk, eat and move until patients end up in a vegetative state and ultimately die. Fine’s House Bill 2790 adds ALD to the list of diseases that the Department of Public Health screens for before newborns leave the hospital. New York State added ALD to its list of newborn screening disorders in 2013.
“Medical advances have made ALD a treatable disease, but only if it is caught early,” Fine added. “By diagnosing this disease early we will help children and their parents live full and happy lives.”