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.

Caring for a spouse/partner with hereditary angioedema (HAE)

Plan and prepare

Know your partner’s emergency and treatment plans

Identify emergency contacts for your partner, including emergency services

Have a detailed plan in place when traveling and call ahead to ensure equipment and emergency services are present and prepared

Work with your healthcare provider to develop a plan in advance of starting a family

Take care of yourself

Eat healthy foods, exercise regularly, and get enough sleep

Create a support network of family and friends

Find ways to reduce stress

Seek help

Contact an advocate from the US Hereditary Angioedema Association

Join a care partner support group

Seek financial assistance

Get help from professionals if needed
Caring for a young child with hereditary angioedema (HAE)

Advocate for your child

Set up an emergency plan and contacts

Take an active role in HAE management, including maintaining an attack journal

Educate teachers, school nurses, coaches, babysitters, and friends and their parents

Encourage your child to participate in activities and lead a normal, healthy life with a tailored HAE treatment plan

Children's book library

If you're caring for a child with HAE, be sure to check out this children's book library developed by the US Hereditary Angioedema Association!
Browse library

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Caring for an adolescent child with hereditary angioedema (HAE)

Attack rates and treatment needs often shift with the onset of puberty

For some individuals, HAE symptoms may begin at the onset of puberty

Attacks typically worsen in severity and frequency with the hormonal changes of puberty

Treatment options expand in adolescence

Care partners should understand how to discuss treatment needs, options, and preferences with their child and their child’s physician

It is essential to consider the burden of both HAE symptoms and treatment when discussing options for HAE management
Caring for a child with hereditary angioedema (HAE) transitioning to college or life away from home

Develop a long-term treatment plan

Ensure adequate supply of medication and ability to store and administer it appropriately

Identify HAE treatment team in their new city or town

Locate an emergency room close to your child’s residence

Determine who to alert about your child’s HAE in their new setting (eg, college, new place of work, etc)
Caring for a young adult with hereditary angioedema (HAE)

Transitioning control of HAE management to a child who is now an adult can be stressful

Recognize that your role as a caregiver is evolving

Encourage your child to maintain their disease management plan while allowing them space to take ownership of their own care

Begin preparing your child for a gradual transition to self-management in their adolescence
Care partners with hereditary angioedema (HAE)

The journey of care partners who have HAE and children with HAE is similar to that of other parents of children with HAE

While care partners with HAE have the advantage of understanding the impact of HAE, they must make decisions based on their child’s needs and not based solely on their own experiences

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.

Important tips for care partners

Learn different ways to support your loved one as well as how to plan for certain life events.

Play video

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.

— Real person living with HAE

Children's book library

If you're caring for a child with HAE, be sure to check out this children's book library developed by the US Hereditary Angioedema Association!

Browse library

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

As a care partner, you play an important role in your loved one’s hereditary angioedema (HAE) story

Important tips for care partners

Children's book library

Be prepared for an emergency

Resources

ER toolkit

US Hereditary Angioedema Association (HAEA)

US HAEA Guidelines

Angel Aid Cares

National Organization for Rare Disorders

Caregiver Action Network