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.
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.
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
