Virginia Regulatory Town Hall
Agency
Virginia Department of Health
 
Board
State Board of Health
 
chapter
Regulations Governing Virginia Newborn Screening Services [12 VAC 5 ‑ 71]
Action Amend Regulations to add SMA and X-ALD to the Virginia Newborn Screening System
Stage Proposed
Comment Period Ended on 7/9/2021
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5/25/21  9:34 am
Commenter: Kathy K Lagana

Infants with ALD or X-ALD can be diagnosed through newborn screening. In 2016, ALD was added to the
 

I have ALD and test results revealed this just a couple years ago (I was age 40 when symptoms began, I am now 55).     As an adult, and it took me approximately 15 years to get diagnosed (after multiple visits with doctors and expensive MRI's, scans, blood testing on and on).   I have 2 girls, ages 26 and 29, both have been tested for ALD and one child tested positive and the other negative (it was recommended that my children be tested).   This was a hidden disease for me and my family until I was diagnosed. 

I feel it is very important to screen for these diseases and I support adding ALD to the Virginia newborn screen panel.     

Thank you.  

CommentID: 98705