Hereditary Angioedema

You could always have an attack. When will it hit, when will it not? You’re always wondering when one is coming. You just never know - Jason, living with HAE

Hereditary Angioedema
Hereditary Angioedema

image by: HAE South Africa

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I have Hereditary Angioedema, so there.

I was born with a condition called Hereditary Angioedema, and grew up thinking it was this silly condition that sometimes would cause me to have a swollen hand or foot. My mother is fortunate, she has never had severe attacks, so assumed it was not a big deal. When my eyes swelled shut in high school, we chalked it up to heat stroke. The fact that I got the stomach flu 5 times a year was because I was so active and didn’t sleep enough. It wasn’t until I was pregnant with my second child that we started to put two and two together.

For me, attacks are usually in my abdomen. My intestines swell up until they close, and I am violently ill for what seems like eternity, but is actually…

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 I have Hereditary Angioedema, so there.

I was born with a condition called Hereditary Angioedema, and grew up thinking it was this silly condition that sometimes would cause me to have a swollen hand or foot. My mother is fortunate, she has never had severe attacks, so assumed it was not a big deal.

Angioedema News

Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment.

All About HAE

If you or someone in your family has hereditary angioedema (HAE), AllAboutHAE.com can help with tips on recognizing, treating, and managing this rare disease. The site also offers personalized, interactive tools.

DiscoverHAE

Whether you live with hereditary angioedema (HAE) or you love someone with the condition, talking with other people who understand the challenges you face can be incredibly helpful. Connecting with people in the HAE community can help you discover new resources, build a support network and find encouragement when you need it.

HAE Canada

A community working together to improve the quality of life for Canadians with HAE

HAEi

HAEI - International Patient Organization for C1-Inhibitor Deficiencies - is a global organization dedicated to raising awareness of C1 inhibitor deficiencies around the world. It is a non-profit international network of national HAE patient Associations.

My life with HAE

I was born with a condition called Hereditary Angioedema, and grew up thinking it was this silly condition that sometimes would cause me to have a swollen hand or foot.

Canadian Hereditary Angioedema Network

The Canadian Hereditary Angioedema Network (CHAEN) is an organization of physicians who treat and/or are interested in Hereditary Angioedema. CHAEN is incorporated under the Canada Not-For-Profit Corporations Act.

US Hereditary Angioedema Association

Our mission focuses on increasing HAE awareness and education, obtaining an accurate diagnosis, empowering patient access to therapy, and fostering groundbreaking research that includes finding a cure.

Berinert

Berinert is the only C1 esterase inhibitor (C1-INH) approved for on-demand treatment of acute abdominal, facial, or laryngeal attacks of hereditary angioedema (HAE) in adults and adolescents.

Cinryze

CINRYZE therapy helps prevent the causes of swelling and reduces the frequency, duration, and severity of HAE attacks.

Firazyr

With FIRAZYR in hand, you can be ready to treat as soon as symptoms start. It’s the first and only injection you give yourself just under the skin to treat acute hereditary angioedema (HAE) attacks — both in and out of home — after you have been trained by a healthcare professional. FIRAZYR is for adults 18 years of age and older.

Kalbitor

A typical HAE attack can last from 2 to 5 days without treatment. On-demand treatment with KALBITOR has been proven to improve the symptoms of a sudden HAE attack at 4 hours and may reduce the need for other medications to treat attacks.

UpToDate

Assessment and protection of the upper airway is the first and most important management issue in the patient with an acute attack involving any part of the airway, because none of the available therapies, including C1 inhibitor (C1INH) replacement, icatibant, and ecallantide, can be considered universally effective in all cases. In addition, these agents take time to work and the patient's airway must be protected in the interim.

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