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What is the life expectancy of someone with Hereditary Angioedema?

Life expectancy of people with Hereditary Angioedema and recent progresses and researches in Hereditary Angioedema

Hereditary Angioedema life expectancy

Hereditary Angioedema (HAE) is a rare genetic disorder characterized by recurrent episodes of swelling in various body parts, including the face, limbs, and airways. The severity and frequency of these attacks can vary greatly among individuals. While HAE can significantly impact a person's quality of life, it is important to note that life expectancy is generally not affected by the condition. With proper management and access to appropriate treatment options, individuals with HAE can lead fulfilling lives. It is crucial for patients to work closely with healthcare professionals to develop a personalized treatment plan that includes preventive measures and prompt intervention during attacks.



Hereditary Angioedema (HAE) is a rare genetic disorder characterized by recurrent episodes of swelling in various parts of the body, including the skin, gastrointestinal tract, and airways. It is caused by a deficiency or dysfunction of a protein called C1 esterase inhibitor (C1-INH), which plays a crucial role in regulating inflammation and preventing excessive swelling.



The severity and frequency of HAE attacks can vary significantly among individuals. Some people may experience mild symptoms, while others may have more frequent and severe episodes. The unpredictable nature of HAE can make it challenging to determine the exact impact on life expectancy.



Although HAE itself is not typically life-threatening, the potential complications associated with severe attacks can pose risks. Swelling in the airways can lead to asphyxiation, which is the most critical and life-threatening complication of HAE. However, with appropriate management and access to effective treatments, the risk of fatal outcomes can be significantly reduced.



Early diagnosis and proper management are crucial in improving the quality of life and reducing the impact of HAE on life expectancy. The availability of effective treatments, such as C1-INH replacement therapies, has revolutionized the management of HAE. These treatments help prevent and control attacks, reducing the risk of life-threatening complications.



It is important for individuals with HAE to work closely with healthcare professionals who specialize in managing this condition. They can provide personalized treatment plans, educate patients about triggers and early warning signs of attacks, and ensure access to emergency medications when needed.



Furthermore, lifestyle modifications and self-care strategies can play a significant role in managing HAE and improving overall well-being. Avoiding triggers such as stress, certain medications, and trauma can help reduce the frequency of attacks. Additionally, maintaining a healthy diet, regular exercise, and adequate sleep can contribute to better overall health and potentially reduce the impact of HAE on life expectancy.



Support networks and patient advocacy groups can also provide valuable resources and emotional support for individuals living with HAE. Connecting with others who share similar experiences can help alleviate the psychological burden and provide a sense of community.



In conclusion, while HAE can significantly impact the quality of life for individuals affected by the condition, it is challenging to provide a specific life expectancy range. The severity of symptoms, access to appropriate treatments, and adherence to management strategies all play crucial roles in determining the long-term outlook for someone with HAE. With advancements in treatment options and proper care, individuals with HAE can lead fulfilling lives and manage the condition effectively.


Diseasemaps
8 answers
unknown. Dyax drug (now Shire) in Phase 3 trials.

Posted Mar 15, 2017 by Jennifer 1150
We can't lead a thrill seeking risk taking life. But with the all the recent therapies available we can have a good life. I was on danazol from 1980 to 2012 and it has done damage to my body that I will never recover from. So I'm so grateful to cynrize, kalbitor and berinert that I no longer have to take danazol.

Posted Apr 27, 2017 by Mary Helen 1400
I don't know.

Posted Apr 28, 2017 by Nikki 1150
With treatment one can hope for a long life however the throats swelling can be fatal

Posted May 23, 2017 by Donna 2250
Normal life expectancie.. HAE can only cause death with a lyranix swell.

Posted Nov 29, 2017 by [email protected] 2300
75% mortality by 36 yrs old

Posted Apr 7, 2018 by Chuck 250
Translated from spanish Improve translation
The risk of life of a person with hereditary angioedema is due to the risk of inflammation of the glottis without the proper medication can end in death.
With proper medication should not be complications the average life of the normal for that country.

Posted Feb 23, 2017 by Mary 1161

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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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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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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
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...
Hereditary Angioedema stories
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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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...
Hereditary Angioedema forum
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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