Meet Jessica
Living with Autosomal Dominant Hypocalcemia Type 1 (ADH1)
When Jessica experiences the more severe and disruptive symptoms of Autosomal Dominant Hypocalcemia Type 1 (ADH1) these days, it can be a surprising reminder of a condition that she’s had since birth. “Some of my friends are like, ‘oh wait, we forgot you’re sick,’” she says, a testament to the way she hasn’t let ADH1 define her life even as she’s weathered its twists and turns.
ADH1 affects the way the body regulates calcium, which in normal amounts supports everything from strong bones and muscles to functional nerves and a regular heartbeat.
For Jessica, this often means painful muscle cramps and spasms, known as tetany, that could strike anytime. She often had to miss school for several weeks at a time, and because of increased fatigue, she also had to miss out on activities she really wanted to do, like swimming.
Now a mother working in the mental health field, supporting her clients and family comes naturally to her. Thanks to her mother’s advocacy and care at the National Institutes of Health (NIH), Jessica began working with her doctors to refine her treatment regimen that stabilized her and improved her quality of life.
Pretty much my mom was getting stitched up and she was being told that your daughter has this condition….there was so much not known [at the time] about ADH1 and babies.”
