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Hereditary Angioedema prognosis

What is the prognosis if you have Hereditary Angioedema? Quality of life, limitations and expectatios of someone with Hereditary Angioedema.

Hereditary Angioedema prognosis


Hereditary Angioedema (HAE) is a rare genetic disorder characterized by recurrent episodes of swelling in various body parts, including the face, extremities, gastrointestinal tract, and airways. These episodes can be unpredictable and potentially life-threatening, making it crucial for individuals with HAE to understand the prognosis and seek appropriate medical care.



The prognosis of HAE varies from person to person. Some individuals may experience mild symptoms and have a relatively good prognosis, while others may have more severe and frequent attacks that can significantly impact their quality of life. It is important to note that HAE is a chronic condition, and there is currently no cure. However, with proper management and treatment, most individuals with HAE can lead fulfilling lives.



Early diagnosis and access to appropriate treatment are key factors in improving the prognosis of HAE. Medications such as plasma-derived C1 esterase inhibitor (C1-INH) or kallikrein inhibitor can help prevent or reduce the frequency and severity of attacks. These treatments work by either replacing the deficient protein or blocking the production of substances that trigger swelling.



In addition to medication, individuals with HAE should work closely with healthcare professionals to develop a personalized management plan. This may include identifying and avoiding triggers that can precipitate attacks, such as stress, trauma, certain medications, or hormonal changes. It is also important for individuals with HAE to have an emergency action plan in place, which may involve carrying self-administered medications and educating family members or close contacts on how to assist during an attack.



With proper management and adherence to treatment plans, the prognosis for individuals with HAE can be significantly improved. However, it is essential to remain vigilant and proactive in managing the condition, as untreated or severe attacks can lead to airway obstruction and potentially life-threatening complications. Regular follow-up with healthcare professionals specializing in HAE is crucial to monitor the disease progression, adjust treatment as needed, and ensure optimal care.


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World map of Hereditary Angioedema

Find people with Hereditary Angioedema through the map. Connect with them and share experiences. Join the Hereditary Angioedema community.

Stories of Hereditary Angioedema

HEREDITARY ANGIOEDEMA STORIES
Hereditary Angioedema stories
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...
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...
Hereditary Angioedema stories
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

HEREDITARY ANGIOEDEMA FORUM
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...
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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