your HAE story

Living with HAE

Lifestyle tips

Your journey with HAE is unique – however, you may find that you share common feelings and experiences with other individuals affected by this condition. It’s important to have a strong support network and personal coping strategies to help you along your road to living well with HAE.
Below are some tips that can help you navigate feelings you may experience in your day-to-day life, at work/school, or while you’re travelling abroad.
Easing anxiety about an attack
HAE attacks are unpredictable and it’s normal to feel anxious or overwhelmed about them. Having a plan can help you feel more control. For example, in cases of preventative therapy, make sure you’re taking your medication regularly, as directed. In addition, be sure to always have your medication for acute attacks on hand. It may also be helpful to ensure that your friends, family, and colleagues are aware of what to do in case of an attack.
Managing triggers
Being aware of and learning how to manage your triggers is vital to navigating your journey with HAE. Click here to learn more about HAE triggers.
Dealing with attacks at school and in the workplace
Since HAE is rare, your teacher or employer may not know much about your condition. Explaining your HAE and how it affects you to the people around you is useful in managing expectations so that you can get the most from school and work.
Travelling with HAE
Having HAE shouldn’t stop you from living your life – travelling should be an enjoyable time and a little planning can go a long way. Some tips on managing HAE while travelling include:
  • Check that your travel medical insurance covers existing conditions
  • Have a signed letter from your doctor stating that out of medical necessity, you must always carry your HAE supplies with you
  • Take sufficient supplies and medication for extended travel abroad
  • Many medical personnel in emergency rooms are unaware of HAE and treat it as an extreme allergic reaction. Carry a health information card with you at all times or have someone with you that can help explain your condition
Finding a community
Ensure that you have close friends, family, and even other members of the HAE community to lean on when you need them. Check out our resources page for useful links!

For more tips on how to live with your HAE, visit AOH Quebec and HAE Canada.

Caring for someone with HAE?

The care partner journey is a commitment that often evolves with time

You play an important role in your loved one’s HAE story.
Getting educated and making use of available resources can help you better support your loved one successfully manage life with HAE.

Tips for care partners

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Seek support

While your journey as a care partner for someone with HAE is unique – you are not alone. Seeking support from other care partners in the community can help you feel understood.

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Take care of yourself

It’s important to take care of your own health so that you can be strong enough to take care of others.

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Accept help

If you’re feeling overwhelmed and need assistance with certain tasks, such as getting a ride to the doctor’s office, accept offers of help.

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Learn about HAE

It’s important to know about HAE so you can help in communicating your loved one’s condition effectively to doctors, emergency room personnel, their peers, and/or their colleagues if they require the assistance.

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Watch out for your mental health

Watch out for any signs of depression or anxiety and get professional help when you need it – your mental health matters.

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“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