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

HAE and Family

Talking Openly With Family Members About Their HAE

Published on April 09, 2014 in HAE and Family

Most of the people in my family have HAE attacks at the abdomen or their arms and legs, and talk about the attacks almost as inconvenient interruptions to their daily activities. 
 
Many in my family don’t seem to acknowledge that HAE attacks are unpredictable, and, for someone with HAE, a potentially life-threatening laryngeal (throat) attack could happen even if they never had one before. In my family, having swelling of a hand, arm, shoulder, back, or even an abdominal attack are all things that can be expected to happen, even though HAE attacks are unpredictable.
 
They tend to just tough it out and go on with life.
 
If they have an attack, most of my family members will just shrug their shoulders, their facial expressions making it seem like it’s really no big deal.
 
But yes, it can be a big deal.
 
When my hands are so swollen that I cannot grip a pen, or my feet are so swollen that I’m unable to get my shoes on, it’s a very big deal. I can’t go about my daily life, and it’s very hard to get to work.
 
Many of my family members say these skin attacks don’t need to be treated, because they don’t consider them life-threatening. While it may be true that they’re different from laryngeal attacks—and you should always go to the nearest hospital emergency room if you have an HAE attack of the throat—these skin attacks can still be serious, and you always have to wonder and be concerned if that attack will progress and where the attack might move. 
 
I’ve been trying to tell my family that there are options in how to approach their HAE attacks. When HAE is brought up as a topic of conversation, I tell my family about available current treatments for acute attacks and encourage them to talk to their doctors.
 
I’m also sure to mention any Shire programs that are coming to our area in the near future. I know that I’ve appreciated getting involved in educational programs like the Shire Patient and Caregiver Ambassador Programs and Ambassador Health Programs. The family members who’ve attended the programs with me told me later that they have some different thoughts about managing life with HAE after listening to others outside the family and they’ve come away more knowledgeable.
 
In the end, everyone is different, and I encourage my family members, together with their doctors, to develop their own HAE management plans and make their own personal treatment decisions.
 
I feel a sense of accomplishment because I’ve been persistent and patient when talking to my family members. And I’m satisfied knowing that I’m at least trying to help them find out more about HAE and be more proactive.
 
Do you have experience trying to talk to your family about HAE? I’d love to hear about it, so feel free to make a comment below!
 
--Mike

Comments:

Mike

[In response to Teresa, who submitted a comment on April 10, 2014]

Thank you for your comment Teresa.  I am sorry to hear about your situation.  This must be a very difficult time for you and your family.  I didn’t feel that I could respond based on my personal experience to the topics raised in your post, so I shared your comments with the Hey HAE Team who will be sending a response soon.  I wish you well!

May 19, 2014

Hey HAE Team

Dear Teresa,

Thank you for writing and expressing the need for additional HAE genetic testing related to HAE types. We appreciate your family's great concerns about confirming an HAE diagnosis, especially when trying to confirm HAE in a family member who already has a pre-existing rare disease with significant potential for complications. You could check the haea.org website for additional resources and information. You may already be working with a doctor; however, if you need to find an HAE knowledgeable doctor in your area, the HAEA has a physician referral page at http://www.haea.org/patients/physician-referrals. Also, the NIH website has information about genetic testing options specific for HAE, type III at http://www.ncbi.nlm.nih.gov/gtr/conditions/C1857728. We hope this information is helpful. 

May 19, 2014

Deb
Hey Mike, read your story about your difficulties with HAE and family members. I can relate to your story though I am the only one in my family of 9 who has this condition. It started in me! It was difficult when diagnosed to get my family to understand how serious it is. My throat swelled for 9 years very bad until diagnosed. My family, even though they saw how sick I was with abdominal, hand, foot, arm and genital swelling and severe vomiting since childhood, did not understand when finally diagnosed. And to top it off when my throat started to swell even I did'nt know my airway could close. Back then we were pretty much ignorant of anatomy. So I lived with this for 15 years before being diagnosed. I can relate to their non urgency because you become familiar with attacks and are used to it and just getting through it. I could go on and on but wanted to respond and thank you for pursuing and persisting that your family members learn more and take action. This is unpredictable!

January 24, 2016

Mike

Hi Deb,

Thanks for taking the time to comment and share your experience with me! It’s nice to hear that you are able to relate to my post. 

You may be the only person in your family who has HAE, but remember that you are not alone. You can hear personal stories from other  bloggers, as well as Shire Ambassadors in the videos found here: http://www.firazyr.com/firazyr-support/video-gallery.

You can also connect with others in the HAE community by attending an event! Visit http://www.firazyr.com/Event to learn more. 

I wish you the very best,

Mike

February 16, 2016

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