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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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Day by Day

I’m Sorry I Can’t: Five Things to Remember When Canceling Plans Because of HAE Attacks

Published on May 28, 2014 in Day by Day

Living with HAE and HAE attacks, I have been forced to cancel plans on countless occasions. Although it can be terribly frustrating, I have come to accept the reality that attacks happen, and they don’t always cooperate with my schedule. 

My journey with HAE has not been an easy one, but through the years, I’ve learned five key lessons that led me to finding peace with my plan-canceling:

  1. Theme parks aren’t going anywhere

The night before I was to travel to a famous theme park, I found myself suffering from a severe abdominal HAE attack. I was crushed that I would have to miss out on the trip. But my mother came to my side, took my hand and reminded me that the park wasn’t going anywhere. Just because I was missing it then didn’t mean I wouldn’t have an opportunity to go on my favorite rides in the future.

  1.  It’s okay to say “bye” to non-supporters

For a great deal of time after one particularly embarrassing incident—involving a date, an abdominal attack, and a restaurant with “out of order” bathrooms—I became overly cautious about making plans. Let me say it’s not worth it to be afraid of how people will react to me. If a date or friends don’t stick around, I’ve learned that I’m far better off without them. It’s more important to surround myself with people who truly care for me and stay with me through the good and bad!

  1.  My cat didn’t hide my car keys!

Being dishonest does a disservice to everyone. For me, any excuse for canceling—surfing injury, rogue jellyfish attack, babysitting a pack of poodles—seemed better than feeling self-conscious about constantly talking about my HAE attack symptoms. I’ve come to realize that I don’t need to give graphic details, but honesty and sincerity are my best tools for canceling plans the right way.

  1.  Helping others help me

HAE is a complicated, rare disease, and the people who care about me want to find out more. I make sure to invite my loved ones to Shire’s live educational programs, including the Shire Patient and Caregiver Ambassador Programs, and Ambassador Health Programs, to help them learn more. I’m proud to spread HAE awareness when I can, and if friends and family know what an HAE attack is and what living with this condition is like, they are far more likely to understand my cancelations!

  1.  I’m not alone

Remember: There are other people with HAE out in the world who might be canceling plans, too! After learning from others living with HAE at events like Shire’s educational programs, I have gained insight that lets me put my canceled plans into perspective.

With these five lessons, I feel more confident that, even with my canceled plans, I’m managing my life with HAE!

What do you do when you have to cancel plans because of acute HAE attacks? Leave me a comment!

--Katie

Comments:

TiaraMarie
This year i have stopped lying about why i cant be some where or do something. im glad you wrote of the friends that leave. i have always though of those people i was missing but now i see they are the ones missing out

June 26, 2014

Katie
Hi Tiara, thank you for your comment! I’m happy to hear that you found my post helpful, and that you are learning to be more open about your HAE when it interrupts your plans. New posts are added to the blog pages frequently so check back for more from me and the other bloggers. Best of luck!

July 14, 2014

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What is FIRAZYR?

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

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