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.

Getting Diagnosed

Letters to My Past Self

Published on May 09, 2014 in Getting Diagnosed

Letter to my past self: your first symptoms of HAE attacks

Dear Younger Self,

When you first start showing symptoms of HAE attacks…

I promise, younger self, the world is as beautiful and big as you always hoped it would be, though I know your existence right now feels so small and detached from that world. 

You should be enjoying life, younger self, focusing on friends and your volleyball serve. Instead, without a diagnosis, you are questioning yourself and your future and are fearful about what impact these mysterious symptoms could have on your life.

Younger self, you cannot express in words the pain that spreads through your abdomen and strikes without warning. Neither you nor your family have experienced anything like your symptoms before, and you try not to scream or panic. You don’t want people to see you struggle. You want to try to be strong and brave. 


Letter to my past self: the road to diagnosis

Dear Younger Self,

On your long road to diagnosis…

You will see many doctors. Exhausted by hospital visits, younger self, you will want to quit. Don’t quit—trust that:

  • you know your own experiences;
  • you know what you are going through; and
  • Mom and dad will stand by you, protect you and help you day by day

And know that, despite all the doubt and unknowns, your optimism will be rewarded.

You’ll walk into the office of a doctor just starting out; he will take you by the hand, and you will know that you’re getting a diagnosis, something you’ve been waiting for.

You, courageous girl, are not making your symptoms up. Your doctor puts the pieces together and gives you the diagnosis—you have hereditary angioedema (HAE).


Letter to my past self: walking into the future

Dear Younger Self,

The uncertainty of the past will start to recede…..

You meet a doctor and his team, and, over the years, they teach you about your condition. Together you make treatment decisions.

I want you to know that your condition will always be a part of you, younger self, but you do not have to let it define you.

You will still be cautious for quite some time, and emotional scars linger. But you will start a treatment plan and gain knowledge.

So keep your head up.

  • stay determined;
  • stay passionate; and
  • never waver in your course

The future is yours for the taking, younger self, and I am waiting for you.



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 »