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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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Getting Diagnosed

Where I Go to Learn More About Hereditary Angioedema

Published on January 30, 2015 in Getting Diagnosed

Just when I think I know everything there is to know about my husband’s HAE, something changes. For example, David might discover a new trigger. And it affects not only him, but because I care for him, me as well. That’s why I feel it necessary to stay informed. Whether it’s before or after diagnosis, there can always be more to know. Since David’s diagnosis, I find information on the disease in various ways:

 

  1. Our Doctor –David and I are so fortunate to have found a physician who is very well educated on HAE. If we have any questions or concerns, we call the office or make an appointment.

 

  1.  Social Media – Some people are not fans of social media. I personally could not live without it. By subscribing to various Facebook pages, I get to network with HAE patients and other caregivers, which provides me with insight and real-life experiences that can’t be obtained from a book.

 

  1.  HAEA – I’ve found that the Hereditary Angioedema Association or HAEA is also a good resource for learning more about HAE. There are many ways to connect with the HAEA online, the HAEA website is a great place to start.

 

Please note Shire is not responsible for the content provided by third parties on any websites or information distributed by HAE support groups or organizations.

 

  1. My HAE Family – Speaking directly with HAE patients and those who care for people with HAE has been very helpful for David and me. I have been fortunate to meet many great people through my journey of being a caregiver—people I’ve become very good friends with, even though most of them live hours away. Thanks to modern technology, I can send them a quick text or email if I have a question, need some reassurance, or just want to check in.

 

Where do you look for information on HAE? Leave a comment below.

 

--Stacey

 

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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