This Incredible Lack in HAE Support Needs to Be Stopped

Hereditary Angioedema (HAE) is a rare disease—like an incredibly rare disease, affecting only about 1 in 10,000 to 1 in 50, 000 people. Despite that, over recent years, it’s gotten more and more awareness, and the resources for those diagnosed are growing. At least, that’s the case for people with Type 1 and Type 2 HAE.

But for people suffering from Type 3—HAE’s estrogen-based step child—there is still a long, LONG way to go.

Most of those great resources for Types 1 and 2 don’t provide the same support or information for the even rarer Type 3, which leaves people like Malika-Jo Hargreaves to fend for themselves.

Source: The Westerner
Malika-Jo is 16. Source: The Westerner

For Hargreaves, this has meant a struggle in three specific ways:

1. Exhaustive hospital visits

Over the past four years, Hargreaves has been admitted to the emergency room over 150 times.

2. Ruined chances for work or school

The severity of Hargreaves’ symptoms means she cannot hold down a routine schedule. Those teenage rites of passage “are now replaced with anxiety, depression, and constant hospitalization.”

3. Lack of understanding

Even with the extent of her attacks, Hargreaves says that people still don’t understand. The fact that she looks fine on the outside leads people to assume she is.

Hargreaves begs the public to become less judgmental and instead be willing to ask questions. I think the best question to ask right now is: Why aren’t there more resources for HAE Type 3?

Being a unique subset of HAE, those with HAE Type 3 need unique information that general HAE programs don’t fully provide.

And until they get their specific programs, I’m afraid Hargreaves and others like her will struggle in more than just three ways.

Kiki Jones

Kiki Jones

Kiki’s family loves to say, “People are like a baking project. At some point, they’re just done and they’re who they’re going to be.” Well, Kiki still has some baking to do, and she learns a lot from her loved ones living with chronic conditions, including mental illness and Behcet’s disease. With a BA in English, she’s using her skills to tell the stories of people like them.

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