This website is intended for US residents only.
As a care partner, you play an important role in your loved one’s hereditary angioedema (HAE) story
The care partner journey is a commitment that often evolves with time
Click icons to find some helpful pointers at each stage of the care partner journey.
Spouse/partner
Young child
Adolescent child
Child leaving the home
Young adult
Care partners with HAE
Take care of yourself—physically and emotionally. Being a care partner is a challenge, and not one you necessarily asked for. It’s important to remember to focus on your own health as well as the health of your loved one.
As a caregiver who’s also living with HAE, something so important that isn’t talked about enough is mental health. I finally worked with a professional to address my anxiety about mine and my children's disease. It’s so important to address the mental health toll HAE takes.
Be prepared for an emergency
- Ensure the person you’re caring for always has at least 2 doses of on-demand therapy
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Create a written emergency plan/letter that includes
- Your loved one’s diagnosis of C1 esterase inhibitor deficiency or hereditary angioedema with normal C1 inhibitor
- Information on their current therapy and acute treatment preferences
- Relevant medical contact information
- Educate family, friends, school personnel, employers, coaches, etc, on HAE and what to do during an attack
- Contact the local emergency room to alert them that a patient with HAE lives in the area and understand what medications they have available to treat an attack
Resources
ER toolkit
View toolkit
US Hereditary Angioedema Association (HAEA)
View site
US HAEA Guidelines
View guidelines
Angel Aid Cares
Visit site
National Organization for Rare Disorders
View guidelines
Caregiver Action Network
Visit site