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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.

Getting Diagnosed

Snapshots: My Life Before and After Diagnosis

Published on June 03, 2015 in Getting Diagnosed

Before diagnosis, my life felt like a study in black and white.

      

I thought I was not as good as everyone else. I was always causing "problems" in terms of everyday things. For example, I had a great deal of difficulty explaining to my employer why I was missing so much work. I did not have a diagnosis to point to or a physician that could explain my symptoms. Many people thought I was either taking advantage of the Family and Medical Leave Act and/or I just didn't want to work.

 

I'll tell you a secret: I would have given anything to be just like everyone else! I felt tethered, like I was missing out on the things that made life colorful. I could not just plan a trip and go somewhere. I had to call ahead and find the closest trauma center. If there wasn't one, I wasn’t comfortable going. If there was one, I could go on a trip but I had no guarantees that I would be able to participate in the fun.

 

During my long search for a diagnosis, I was told more than once that my symptoms were all "in my head." Even as a nurse with 15 years of experience, many people were skeptical of me when I claimed there was something wrong with my health. It was like I checked my credibility along with my clothes every time I walked through a hospital door. Physically and emotionally, I was in a dark place, going downhill.

 

After diagnosis, life, to me, feels like a study in color.

 

I now have a name for what my problem is. This has been quite a change, and it has taken some time for me and my family to get used to having a diagnosis. Old habits die hard and I started out with a fear of testing my wings. I continued to ask the doctors, "Are you sure?"

 

Over time, I’ve been able to start seeing myself as being a little more like everyone else! I no longer have fear or shame. They have been replaced with a fierce desire to advocate for others. With my husband and friends in tow, I feel my world is now filled with color and possibility. It’s like I am truly living a life untethered, at last.

 

What was your road to diagnosis like? Leave a comment below!

 

-- Nina

 

The journey to an HAE diagnosis differs for everyone. Hear from Shire Ambassadors at an event near you. Click here for more information.

Comments:

Nina

[In response to Leslie, who submitted a comment on March 1st, 2017]

 

Hi Leslie,

 

I appreciate you taking the time to share your story with me! I know how frustrating it can be to search for a diagnosis and experience symptoms while feeling like people just don’t understand. I’m happy to hear you finally know your answer, and that you have a management plan that works for you.
 

I wish you the best!

Nina
 

March 20, 2017

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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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