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Newborn babies will be tested for rare disorder in Illinois

The Illinois Department of Public Health (IDPH) is rolling out  required testing for adrenoleukodystrophy (ALD) for all newborn babies statewide.

ALD is a rare hereditary disorder that affects the brain, nervous system, and adrenal gland.

Dr. Dennis Go with Quincy Medical Group said it is rare hereditary disorder but if left untreated it can be fatal. He added screening for ALD is important because babies with the disorder and born with a normal brain and it can progress overtime.

“The most exciting thing is now there is some gene therapy, in which you can actually, for a lack of a better term cure this type of disease but in order to do that you have to make the diagnosis early,” Dr. Go said.

Treatments include adrenal steroid replacement and stem cell transplantation and therapies are only effective during a narrow window, which is often missed, according to the Illinois Department of Public Health.

The U.S. Department of Health and Human Services added ALD to the national Recommended Uniform Screening Panel in February 2016.

Implementing ALD screening required the purchase of new equipment, development of new test methods, Clinical Lab Improvement Amendments lab test validation, and computer system modification to provide laboratory results and facilitate follow up tracking.

Illinois is now the 14th state in the U.S. to screen for ALD, to learn more about click here.

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Drew Brown

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