An advocate is born: My hereditary angioedema diagnosis story
At 17, Hollie Amadio began a nine-year search for answers before being diagnosed with hereditary angioedema. Now, she’s an advocate, fighting for faster diagnoses and greater awareness.
HAE Hub
Surprise or not? Bracing for the news we’d been led to expect
Despite a doctor suggesting the possibility, caregiver Danita LaShelle Jones wasn't ready for her daughter's hereditary angioedema diagnosis. It took time, but eventually she was able to accept their new reality.
Despite preventive treatment, HAE patients require on-demand care
Even with long-term preventive treatment, many people with hereditary angioedema still sometimes have swelling attacks that require on-demand treatment, a review study finds.