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FIRAZYR is a medicine used to treat acute attacks of hereditary angioedema (HAE) in adults 18 years of age and older.
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Day by Day

Navigating the ER: Talking to Doctors Unfamiliar with Hereditary Angioedema about Symptoms of HAE Attacks

Published on February 18, 2015 in Day by Day

I learned early on in my journey with HAE that a trip to the ER often meant having to communicate with a doctor unfamiliar with HAE—indicating I’d have to be ready! And while I now have FIRAZYR® (icatibant injection), a prescription medication approved for treating acute HAE attacks in adults 18 years of age and older, I still have to be prepared. I arm myself with a plan and all the materials needed to execute it if I ever have to go to the ER. 

 

Remember, laryngeal attacks can become life threatening. If you have an HAE attack of the throat (laryngeal attack), inject FIRAZYR as directed and then go to the nearest hospital emergency room right away.

 

Here are things that I consider to be crucial in the event of preparing for an emergency room visit—things I’d recommend for everyone with HAE:

 

Don’t leave home without these!

  • Make sure that you always carry your ID and insurance cards with you 
  • Have your primary care doctor’s number with you; call him or her on your way to the ER, if possible   
  • I always make sure to have a list of all medications I am taking. Also, I note any allergies I have to certain drugs. The ER staff will need to know all of this—and I may not be in the condition to easily recall it. 

Where is the ER?

  • Be familiar with the emergency rooms by your home and work. You can visit these in advance, and acquaint yourself with the staff and facilities. Make sure to jot down all the appropriate phone numbers. When traveling, it is also important to familiarize yourself with ER facilities in the area.

How will I communicate HAE?

  • I have a letter from my doctor that explains my HAE. It is thorough, but I also bring materials that I have obtained. Print-outs that define the illness, highlight the symptoms, and explain treatment are all extremely helpful. You could also encourage an unfamiliar doctor to speak with your current doctor via phone.

Bring a loved one, if possible

  • You may also be in pain, which can make it difficult to communicate clearly. If possible, bring a family member or friend to the ER with you. Not only can they answer questions and clearly communicate that you have HAE, but they can help care for you and keep you relaxed.

Communicate clearly and firmly

  • Regardless of whether it is you or a loved one talking, it is crucial to communicate clearly and not waiver. You know your diagnosis, and you know the symptoms of an HAE attack! Don’t panic if there is confusion amongst the medical staff. Keep explaining and be patient.

 

Above all, STAY CALM, and know that you have a plan. The earlier you prep, the better. So, start preparing today!

 

How do you inform doctors of your HAE? Leave a comment!

 

--Katie

 

The journey to an HAE diagnosis differs for everyone. Hear from Shire's Patient Ambassadors at an event near you. Click here for more information.

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What is FIRAZYR?

FIRAZYR is prescribed to treat acute HAE attacks in adults 18 years of age and older.

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