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

HAE and Family

Communication is Key: Talking With My Spouse

Published on May 02, 2014 in HAE and Family

After living with them for years, I’ve come to a point when I can now remain calm when I’m experiencing the symptoms of an HAE attack.

My wife, not so much. At least, not when we were first married….

Don’t get me wrong; I don’t know what I’d do without her, and we’ve known each other since high school. But she didn’t know anything about HAE until we started dating. And she didn’t grow up knowing people with HAE like I did, surrounded by family members living with HAE. My wife would get nervous and hover around me when I had an attack, which was frustrating for me sometimes because I felt I was managing my acute HAE attacks on my own, and she shouldn’t necessarily be so worried.

Because we had such different reactions to my HAE attacks, I always felt the need to hide my symptoms from her.

Eventually, I figured out that we needed a plan to manage my disease. We needed to talk and find ways to help each other and support each other when an HAE attack happened.

We talked about our reactions to my acute HAE attacks. It was important for us to share our concerns.

These were some difficult conversations to have, but they were conversations that we needed so that we could find ways to understand and support each other.

Over time, my wife and I have learned to build more trust with each other when it comes to my health. It’s still tough at times, but we’ve gotten a lot better at open communication daily.

From my end, I started working on communicating by:

  • Expressing what I’m feeling about my health day to day
  • Making sure my wife is aware of my HAE symptoms when they start
  • Reminding myself that my wife can’t help me if she doesn’t know what’s going on

My wife, for her part, has worked on helping me by:

  • Not overreacting or getting overexcited around me when I’m experiencing acute HAE attacks
  • Helping keep track of my supply of FIRAZYR® (icatibant injection)—a medicine used to treat acute attacks of hereditary angioedema (HAE) in adults 18 years of age and older
  • Being there to help with anything I may need to manage living with my HAE

And, if we do need additional information and ways to manage my HAE, we know there are resources available, including my doctor and OnePath® Case Manager, as well as Shire's Patient and Caregiver Ambassador Programs and Ambassador Health Programs.

It’s not always easy to be open with each other about our feelings, but it’s worth it for us. It’s the only way my wife and I can know what the other is thinking so we can work toward resolving issues.

How do you go about having open communication with your spouse or healthcare team? Let me know—leave a comment!


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 »