Letters to HAE: Finding Hope While Living with Hereditary Angioedema

Letters to HAE: Finding Hope While Living with Hereditary Angioedema

Hereditary Angioedema (HAE) is an ultra-rare blood disorder that has seen much progress in the medical community, making great strides towards the diagnosis, treatment, and prognosis of HAE. This progress is truly remarkable and reflects key progress forward in the HAE community.Despite the gains in medical understandings and protocols for HAE, one key area has been left behind in the development of HAE supports: a solid understanding of effective trauma--informed psychosocial treatments and interventions. Letters to HAE aims to start a conversation about the emotional and psychosocial aspects of living with the life-threatening disorder of Hereditary Angioedema. It aims to bring together a common understanding of the lived experience of both HAE patients and family/caregivers through topics that include: •Trauma & Challenges of Living an Ultra-Rare Life; •Grief & Loss; •Partnering with Professional Supports; •Isolation & Cultivating a Tribe; and •Finding Hope and Living Well with HAE. Above all else, Letters to HAE serves to highlight the depths of the psychosocial experience while searching for the fluidity of hope in this ultra-rare disease community.