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

Processing a Hereditary Angioedema Diagnosis

Published on November 04, 2015 in Getting Diagnosed

Having questions about how to deal with HAE after receiving the diagnosis is only natural. So, to those just recently diagnosed with HAE, I’ve written out a short list of questions I’m frequently asked and how I answer them based on my own experiences. I like to think it might help someone on a similar journey.  


Q: What do I do now?

A: I was lucky to get a diagnosis at a young age, because of my family history. While I didn’t choose it, getting my diagnosis meant I could take the next step. And, for me, the next step was talking with an immunologist about treatment. The great news is, nowadays, in my experience interacting with doctors, I’ve found that they are much more aware of HAE and its treatments.  


Q: Why do I feel like no one understands me?

A: HAE is a rare disease, which means not many people know about it. Luckily, it seems to me that HAE is becoming more and more understood. There are resources on social media and at programs, like the ones sponsored by Shire. I personally have been able to connect and create lasting bonds with the people who attend. The HAEA is another great resource to learn about networking opportunities.


Q: How can I help my family understand my HAE?

A: In my opinion, I think it can be beneficial for spouses or other family members to attend functions where they can learn about HAE and meet other people dealing with similar issues.


Q: Are there treatments for HAE?

A: Yes. In the past decade, new treatments have become available to us. By working with my doctor, I developed a treatment plan that works for me.


Q: How can I afford treatments?

A: Again, good news—there are programs available to help people having difficulty paying for their medicines. In my case, OnePath®, Shire’s personalized product support service, was able to help me with my questions about paying for my treatment. When I first started treatment, I was assigned a Case Manager, who helped me work with the insurance company to qualify for my treatment. OnePath can also provide information about its own co-pay program.

So, if you're new to the HAE world, I welcome you and wish you the best of luck.  

When you were first diagnosed, what were some of your main questions? Leave a comment below!



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

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 »