Hey HAE: Connect. Ask. Share.
FIRAZYR is a medicine used to treat acute attacks of hereditary angioedema (HAE) in adults 18 years of age and older.
Share / Send / Save

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!

--Bobbi

Add Comment


The information on this page is owned and controlled by Shire. All submissions will be reviewed and must be approved by Shire before being posted. Comments that do not directly relate to the topic, are factually inaccurate or misleading, or are spam, inappropriate, use profanity or are defamatory will not be posted.

Please keep your comments respectful, appropriate and do not reference any product names or product information. We will not post comments that include drug names or descriptions. Please note that Shire may choose not to post, or may remove, a comment for any reason at any time. Comments on the page from members of the public do not necessarily reflect the views of Shire and Shire does not endorse any content added by other users.

We are required to record and handle the submitted comments in a specific manner to monitor the safety of our product. If you have experienced a side effect or have a complaint specific to a Shire product, please contact your healthcare provider. In addition, we encourage you to report the event to us by calling +1-800 828-2088 or +1-888-300-6414, where someone is available to speak with you.

The information on this page is intended for residents of the United States only and is not meant to substitute for the advice provided by a medical professional. Always consult a physician if you have health concerns.

What is FIRAZYR?

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

Get the facts »

Upcoming Events