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What is the prevalence of Hereditary Angioedema?

How many people does Hereditary Angioedema affect? Does it have the same prevalence in men and women? And in the different countries?

Prevalence of Hereditary Angioedema

The prevalence of Hereditary Angioedema (HAE) is estimated to be around 1 in 50,000 individuals worldwide. This rare genetic disorder is characterized by recurrent episodes of swelling in various body parts, including the face, limbs, and airways. HAE is caused by a deficiency or dysfunction of a protein called C1 inhibitor, leading to uncontrolled activation of certain blood proteins and subsequent swelling. Although HAE is relatively uncommon, it is important to diagnose and manage the condition appropriately to prevent potentially life-threatening attacks.



Hereditary Angioedema (HAE) is a rare genetic disorder characterized by recurrent episodes of swelling in various body parts, including the face, limbs, gastrointestinal tract, and airways. It is caused by a deficiency or dysfunction of a protein called C1 esterase inhibitor (C1-INH), which leads to uncontrolled activation of certain immune pathways.



The prevalence of HAE varies across different populations. In the United States, it is estimated to affect approximately 1 in every 50,000 individuals. However, this prevalence may be higher due to underdiagnosis and misdiagnosis. HAE can affect both males and females, with symptoms typically appearing during childhood or adolescence.



It is important to note that HAE is an underdiagnosed condition, and many individuals may go undiagnosed or misdiagnosed for years. The symptoms can be debilitating and potentially life-threatening if not properly managed. Prompt diagnosis and appropriate treatment are crucial in improving the quality of life for individuals with HAE.



Disclaimer: The information provided here is for educational purposes only and should not be considered as medical advice. If you suspect you or someone you know may have Hereditary Angioedema, please consult a healthcare professional for proper evaluation and diagnosis.


Diseasemaps
3 answers
From as many as 1:10,000 to as few as 1:50,000

Posted May 23, 2017 by Donna 2250
1 in 50000 people are affected. Men and woman

Posted May 14, 2019 by [email protected] 2300

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Mine started in 2009 with my first swell, it was my lips and cheek. That is the same time the ucartia started also. It took my Dr. 5 years to find something to help me control and survive my Angioedema. I never knew how bad this could be till I was d...
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My earliest memory of HAE symptoms was when I was about 6 or 7.  I would occasionally get the abdomen swelling, be sick and sweating all day, then I would finally vomit and then feel better, go to sleep and be better the next morning.  I consider m...
Hereditary Angioedema stories
Desde niño tuve que soportar los diversos episodios de AEH sin saberlo, pasando de medico en medico con diversidad de diagnosticos y ordenes de cirugias innecesarias, gracias a Dios no acudi a ninguna. Fue hace tres años que optuve el diagnostico r...
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I was diagnosed accidentally, after seeing a TV show where the host talked about her HAE in 2014. My first attack was at 8, when I was mistakenly hospitalized with appendicitis.  The surgery wasn't done, because I felt better in 3 days.  Next reme...
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i was dx in 2008 with my first fasel swell . im hae type 2 . im co founder of the facebook group ( https://www.facebook.com/groups/156649074393978/ )

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Hereditary Angioedema forum

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Hereditary Angioedema forum
Hi All, Is anyone aware of Cinryze experiencing a shortage supply? If so, why and where is this shortage (US or Europe)?   Thanks!
Hereditary Angioedema forum
Hi All, Is anyone aware of Cinryze experiencing a shortage supply? If so, why and where is this shortage (US or Europe)?   Thanks!
Hereditary Angioedema forum
Hi All, For those of you currently (or in the past) taking Cinryze, Firazyr, or Kalbitor, has Shire always paid for your co-pays through the co-pay assistance program or was there a limit to how much they paid? I've also heard that the case managers...
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Hi Everyone, I am interested in understanding and learning about your perspective on treatments and services available for HAE. What happens when you lose insurance and you need to obtain treatment? During this time, are you given treatment fre...
Hereditary Angioedema forum
Hi Everyone, I'm trying to understand what it is like for people with HAE. Therefore, would you ever switch treatment? Why or why not? What happens if you lose insurance coverage? Are you still recieving treatment? Was there a time where you had to ...

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