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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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Blindsided by HAE

Published on January 15, 2014 in About the Bloggers

My husband, David, had known about his diagnosis of HAE for years, but nobody told ME about it until after we married. I was blindsided. I knew he frequently didn’t feel well—he would sleep a lot, which apparently was his way of masking his attacks. So the first time I witnessed an HAE attack, I felt scared and helpless. Lying on the bathroom floor was my husband: a grown man in tears from excruciating pain. He described it like “being stabbed with a sword and the sword being slowly turned.” All I could do was cry.  
 
David had spent so many hours in hospitals when he was growing up because of his HAE. So, by the time he reached adulthood, he preferred to “suffer at home.” And, because of his HAE, David’s parents hadn’t allowed him to play contact sports and, on some level, David was ashamed. He had no desire to talk about HAE or do anything proactive to change his situation. Once I knew he had HAE, I wasn’t even allowed to tell anyone. That became a bone of contention between us. I wanted things to change. 
 
That change came when another member of our family was diagnosed with HAE. I couldn’t keep David’s secret any longer.  
 
As you can imagine, David was not happy when I told people (even though he understood why I’d done it). But he did become a little more proactive about his health. Over time, he realized that no one was judging him and that this disease was nothing to be ashamed of. It was not a result of some indiscretion; heck, it was how he was born. 
 
Now that we’re no longer hiding HAE, I feel compelled to share my journey. I want other caregivers to know they’re not alone. It’s okay to feel anger, frustration, and sometimes guilt. But I’ve learned we still have the power to stay informed and to stay connected. We can refuse to let HAE define us.  
 
Please comment below and let me know what you’d like to read about. When it comes to HAE, I know (and now David does, too) that more communication is a good thing. 
 
-Stacey 
 

Comments:

Bobbi
Stacey, thank you for sharing your story. I am happy you are able to talk about HAE and that David is too.

February 10, 2014

Stacey

[In response to Stacey, who submitted a comment on September 23, 2015]

Hi Stacey! I’m glad that you decided to reach out about your family’s experiences with HAE—you are not alone.  We know all too well that managing a loved one’s diagnosis, and everything that comes with that, can be frustrating. I’ve found that staying informed and connected with others can help!

You may find it helpful to speak with someone from the You, Me and HAE program. Through this program, you can speak with a patient mentor about their experiences with HAE. They have been where your loved one’s are and can help answer questions you may have.

Another great way you can connect with others is by attending a Shire Patient and Caregiver Ambassador program. At these programs, you can hear personal stories from someone who has HAE and someone caring for a loved one who has HAE. You can register for both of these programs here: https://www.firazyr.com/Event

I wish you and your family well!

-Stacey 

October 30, 2015

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

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