Action | Amend Regulations to add SMA and X-ALD to the Virginia Newborn Screening System |
Stage | Proposed |
Comment Period | Ended on 7/9/2021 |
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.