X-Linked Adrenoleukodystrophy (X-ALD)
(X-linked • uh-dree-noh-loo-koh-DISS-truh-fee)
If your baby’s blood spot screening result for X-ALD is out-of-range, your baby’s healthcare provider will contact you. Together, you will discuss next steps and follow-up plans.
An out-of-range screening result does not mean that your baby definitely has X-ALD. It does mean that your baby needs more follow-up testing. Those tests may include blood tests and genetic tests using a blood sample or other sample (collected from the mouth or skin, if needed).
You should complete any recommended follow-up testing as soon as possible. Babies with this condition can have serious health problems in the first few months after birth if they are not diagnosed and treated quickly.
False-positive newborn screening results for this condition are rare.
Next Steps
Parent-to-Parent Connection: After following up with your baby’s healthcare provider, you may want to speak with a parent whose child received an out-of-range screening result or has been diagnosed with X-ALD. If so, contact Encircle Families at 602-242-4366 or info@encirclefamilies.org to request a parent-to-parent connection.
Arizona Early Intervention Program: Because a diagnosis of X-ALD may affect a baby’s development, they are often referred to the Arizona Early Intervention Program (AzEIP). If you haven’t heard from AzEIP or would like to learn more about the program, visit https://des.az.gov/azeip.
Arizona Health Care Cost Containment System: AHCCCS is Arizona’s Medicaid program. If your baby is diagnosed with X-ALD, they may be eligible for health coverage through AHCCCS at no cost to you.
Arizona Long Term Care System: ALTCS benefits may be available if your baby is diagnosed with X-ALD. You can learn more about the program at https://www.azahcccs.gov/Members/GetCovered/Categories/nursinghome.html.