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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.

Day by Day

How the Global HAE Community Helped Me Become My Own Advocate

Published on July 30, 2014 in Day by Day

At the first HAEA conference I ever attended, I was overcome with emotion. All these friendly people hugging each other knew what it was like to live with HAE! My daughter wrapped her arms around me and said, "Mom, you've waited your whole life for this moment!" She was so right!

I take away so much information and inspiration at educational programs about HAE—and that empowers me to take an active role in my healthcare. I wasn’t able to attend this year’s HAE Global Conference in Washington, D.C., but my friend, Nina did.

Here are her “key takeaways”:

  • Our experiences with HAE make us very much alike
    •  It’s wonderful to see and hear the multitude of languages and realize that even though we’re all very different, having HAE helps us understand each other
  • The HAEA community can be so compassionate and supportive:
    • A group traveling from overseas was delayed a day or so by weather, and until they arrived safely, they were “the talk of the town”—we were all so worried; because HAE attacks are unpredictable, we know that travel can be a concern
  • HAE treatment plans have come a long way
    • Nina was reminded of when there weren’t as many treatment options available for people with HAE. These days, she feels more prepared to face the challenges of managing life with HAE.
  • The HAE community has seen a lot of changes, but much more needs to be done in terms of HAE education and awareness

For me, meeting others with HAE is a learning experience that gives me the confidence to be my own advocate. Through events like the HAEA conferences and educational programs like Shire’s Patient and Caregiver Ambassador Programs and the You, Me and HAE Mentor Program, I have learned about other people’s experiences. I have made lifelong connections around the world and know that I will always have a support system in place. Meeting other folks living with this disease has broadened my outlook and inspired me beyond words.

Do you have good HAEA conference memories? Please leave a comment!


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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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