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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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Becoming a Patient Advocate

Published on January 23, 2015 in About the Bloggers

Looking back, my first painful memory of what I think was hereditary angioedema happened at the age of six. I had gone out to the playground for recess when my belly suddenly began hurting so badly I could hardly breathe.

 

Growing up, I spent most of the summer months with my grandmother at her farm and she told me that my belly pain was just like hers. I had what she called “the belly.”  As I grew older, I did the best I could to survive “the belly.” It would flare up and, inevitably, it would be during a vacation, holiday, or birthday celebration. Any time there was excitement, no matter happiness or sadness, I would have a problem.

 

My search for a diagnosis kicked into high gear in my 40s. Thankfully, my hometown doctor never stopped trying to alleviate my abdominal pain and nausea. Best of all, he allowed me to talk with him for an hour each time I went in with my swollen belly. This would be the man who sent me to a specialist who diagnosed me with HAE, at the age of 50. I will always be grateful for his kind patience, and I encourage everyone to keep searching for a doctor who really listens.

 

After I was diagnosed, I started looking for others in the family who may have symptoms. I have identified several who have HAE symptoms and encouraged them to seek a diagnosis. I believe in educating others, in spreading the word about HAE so that it becomes more commonly known.

 

Sadly, I lost my grandmother, who’d been in my corner, before I found a diagnosis. But, I’ve gained a whole community of people who understand “the belly.” These days, those of us with HAE have options, information, and support that were unknown in my grandmother’s day. We have certainly come a long way and I hope we all remember to be proactive about our health.

 

-- Nina

Comments:

Alexandra Lazar
Dear Nina, my sister is currently suspected of HAE type 3, as C1 and C4 analyses came negative but she does have manifestations of HAE. We are from Romania and unfortunately the doctors have not succeed in diagnosing this disease. As I am sure you know, it is quite a debilitating disease and it affects the daily activities as well as being a consistent threat upon survival. I am reaching to you in the hope that you can guide us towards a center/ doctor that is knowledgeable in this area. Thank you very much and wish you health always

September 11, 2017

Nina

Hello, Alexandra!

I’m so glad you reached out about your sister. I understand how difficult it can be to find a doctor who is knowledgeable about this rare condition. Thankfully the global HAE community continues to grow, and there’s more information and support than ever before.

While I cannot recommend a specific provider, I’d recommend you check out The Romanian Hereditary Angioedema Network (RHAEN) by visiting their website here: http://www.haenet.ro/en/node/2. You may be able to find a doctor in your area by contacting the RHAEN directly: http://www.haenet.ro/node/35.

I wish you and your sister all the best!

Take care,

-Nina 

October 10, 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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