How HAE Changed This Woman’s Perspective of the World

As a writer, every once in a while, I’ll have an “A-HA!” moment: Usually when I realize my perception about something is off kilter, and the truth suddenly becomes apparent.

Kristin Morris had one of those moments recently, and she wrote about it in the publication Medical Marketing & Media. She was interviewing a teenager who suffered from hereditary angioedema, or HAE.

As any good writer will do, Morris did her homework before the interview and learned that HAE is an extremely painful and unpredictable disorder that can even end in death. People with HAE have sudden swellings in their bodies–specifically their abdomen and extremities– including sometimes deadly laryngeal attacks.

swollen hand hae attack
HAE attacks are no joke! They are painful and can be embarrassing. Source: www.haea.org

Expecting her interview would focus on the downside of having HAE, Morris was surprised when her subject arrived with a sunny smile and began to talk about treatments that have come to the market since 2008.

Prior to 2008, there were no effective treatments for HAE.

But now, there is a medication to help prevent attacks, and another to treat acute attacks.

Morris came to the realization her interview subject was leading a fairly normal life because she had access to these so-called orphan drugs. Talking to a person with first-hand experience completely changed Morris’s perspective and gave her that “A-HA!” moment every writer craves.

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It’s amazing what a little change of perspective can do! Source: www.flickr.com

If you have HAE, or care for someone who has it, here are some helpful phone numbers (for US residents, only) courtesy of the US Hereditary Angioedema Association:

For an HAE emergency call: (866) 841-HAEA or (866) 841-4232 
For non-emergency questions: (866) 798-5598


What has been your “A-HA!” moment? Share it with the PatientWorthy community and leave a comment!

Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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