The Once Upon A Gene Podcast on the Health Podcast Network recently sat down with Angela Lindig, a mom of a HNRNPH2 patient. This episode, which aired June 10, 2021, can be found here.
Among other things, Angela discusses her daughter Amber, who was diagnosed at age 23, the relief of a diagnosis, speaking to other families who have been affected by the disorder, and Amber’s independent living arrangement.
ONCE UPON A GENE – EPISODE 086
Why a Diagnosis Matters with HNRNPH2 Rare Mom Angela Lindig
Angela Lindig’s daughter had a diagnosis of Atypical Rett for years, but was recently diagnosed with HNRNPH2. Angela runs Idaho Parents Unlimited, which supports, empowers, educates and advocates to enhance the quality of life for Idahoans with disabilities and their families. Amber is also working on a campaign about why diagnosis matters and is working to help families access whole exome sequencing (WES) tests.
Special Books by Special Kids is a nonprofit organization that conducts interviews with people in the disability/neurodiverse community with the intention of creating a more inclusive world. They sat down on May 10 with Whitney, an HNRNPH2 patient with a bright smile and beautiful heart. During the interview, Whitney and her family discuss themes of friendship, family, and living with a rare genetic disorder. The interview can be enjoyed here.