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 Short Path to Diagnosis

Published on August 06, 2014 in Getting Diagnosed

I was fortunate when it came to getting diagnosed with HAE. I’d lived with HAE symptoms for as long as I could remember, but when I turned 19, my swelling incidents became more frequent and began spreading to other parts of my body. So I went to see my GP about them. My GP referred me to a rheumatologist, who then referred me to an allergist/immunologist. He ordered a screening test that indicated HAE. I had an answer to what was wrong with me in just a matter of months.

I know how blessed I was to get confirmation of what was happening to me relatively quickly. I finally felt validation for my symptoms. True, it was very concerning to receive a diagnosis for a disease with no cure. But at least I had a name for it!

Regardless of how scary an HAE diagnosis can seem, I feel better at least knowing what my loved ones and I are up against, rather than not knowing. My heart goes out to all who have struggled for so long to get help and a proper diagnosis. It is not an easy fight. I am also thankful that now there are treatment options available.

Was your path to diagnosis long or short? Please leave a comment!

--Bobbi

Comments:

Bobbi

[In response to Maryalice, who submitted a comment on March 08, 2015]

I appreciate you taking the time to comment, Maryalice. Although my diagnosis journey was short, I know how frustrating this process can be for many patients. Keeping a journal  of your symptoms is a great idea! Those records often become helpful resources as you continue to identify possible symptoms and triggers. 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 www.haea.org/patients/physician-referrals.

We are our own best advocates for our health so be sure to keep seeking help and asking doctors about your symptoms.

Take care!

-Bobbi

March 25, 2015

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