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.

Patient image

Be prepared for an emergency

  • Ensure the person you’re caring for always has at least 2 doses of on-demand therapy
  • 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

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US Hereditary Angioedema Association (HAEA)

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US HAEA Guidelines

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Angel Aid Cares

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National Organization for Rare Disorders

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Caregiver Action Network

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