We recorded these video messages a few years ago and it’s become a tradition to share them on Mother’s Day. The patients in the video are living with primary immunodeficiencies and hereditary angioedema (HAE). Their advice is evergreen.
“I just wish for all the mothers, children, everyone. I just hope you have the best quality of life possible. Advocate for yourself always,” Stacy Ahearn said.
Lynne Doebber, who lived for decades without diagnosis or treatment for her primary immunodeficiency, also stressed advocacy.
“Be a mama bear,” Doebber said. “Because you have to be an advocate for yourself or a child who has a rare disease and you want this person to have the best treatment and the best chance to move forward.”