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

Getting Diagnosed

My Hereditary Angioedema Family

Published on December 30, 2014 in Getting Diagnosed

Sometimes, I find myself focusing on all of the negative things related to living with my husband’s HAE. It is easy to get caught up in all of the bad. A coping mechanism that I have recently implemented into my life is to focus on the things within my control. With my husband’s HAE, there are so many things that are not in my control. One thing I CAN control is how I react to any given situation.

I choose to react to living with HAE by surrounding myself with others who can relate to what I am dealing with. I am fortunate to have met many people who, over time, have become what I refer to as “My HAE Family.” This “family” consists of HAE patients, caregivers, and medical professionals. Some of the best relationships result from just a common interest.

I have met such great people while attending medical conferences and HAE informational events. Some live clear across the country! Luckily, we are living in the age of technology and social media, so I am able to reach out to my “HAE family” via email, Facebook, etc….

Sometimes, when I am feeling down, being able to communicate quickly with an HAE “family member” can turn my entire mood back around. I even find myself communicating about things other than HAE. With these “family members” scattered across the country, I feel like I could reach out to any one of them, and be welcomed with open arms. When traveling, knowing that there are people in the area that I can call on if I need to gives me a sense of security and safety.

I am so thankful that something very good has come out of something that can be very frustrating and scary. Without HAE in my life, I wouldn’t have my “HAE family” in my life.

How has the HAE community helped you? Leave a comment below!

--Stacey

Caregiver experiences differ for everyone. Hear from a Shire Caregiver Ambassador at an event near you. Click here for more information.

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