OTHERS

Life with the Rare Disease: Hereditary Angioedema (HAE 3)

Rare Disease & Syndrome

Jill Jones

Hereditary Angioedema (HAE 3) and Me

Hi, my name is Jill and I’m a 33-year-old California raised, self-proclaimed mega nerd. I was diagnosed with the Rare Disease Hereditary Angioedema Type 3 (or HAE for short) last year, though HAE has affected me for 15 years. HAE causes unpredictable attacks internally. During these attacks something triggers my blood vessels to become “leaky” and that leaked fluid turns into massive, painful, potentially lethal swelling *anywhere in the body*. Attacks can last days on end, for me it happened bi-weekly. The attacks are located in the airway, intestines, limbs, face, and more. Since this is a genetic blood disorder and not an allergy, it does not respond to normal medications like Epipens or Benadryl. Without vital HAE medications, patients have a mortality rate of 1 in 3.

Diagnosis and awareness are the keys to saving HAE lives

Having a Rare Disease has undoubtedly changed my life in more ways that one, but not all for the bad. When I first found out I have this rare, potentially life-threatening illness, I decided that I only had one option: advocate. I chose to be the best Rare Disease HAE Warrior I can be. If I have to live with an incurable genetic disease, then I am going to be the loudest, proudest, and best advocate for HAE that I can be. Because of HAE 3 I have become a stronger person, I’ve made some amazing friends in the Chronic Illness/ Rare Disease Community, and now co-author a Rare Disease blog called @chronically__chill.

For more info on all 3 types of HAE please check out: HAEA.org

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