Man shares story of Hereditary Angioedema on National Rare Disease Day

HAE afflicts just 1 in 50,000 people
Posted at 5:48 PM, Feb 28, 2017
and last updated 2017-02-28 19:48:32-05

HIGHLANDS RANCH, Colo. - Many of you know the pain of illness -- whether it's you fighting it or someone you know.
Sometimes those illnesses go undiagnosed, misdiagnosed or are simply misunderstood.
Because of that, today is National Rare Disease Awareness Day, and one Highlands Ranch man is sharing his story in hopes of inspiring others.

"I'll just show you guys really quickly," said Tad Rockwell as he opened a box of the drug he takes twice a week.

Maintaining his disease is now a matter of routine for Rockwell, but it wasn’t always this easy.

"My first attack happened when I was five-years-old," Rockwell said.

Through the years, he documented the episodes of swelling with photos. His face swelled so badly, he couldn't close his mouth.

"My tongue swelled out of my mouth," Rockwell said.

His disease is called Hereditary Angioedema, or HAE. It is essentially the spontaneous swelling of various parts of the body.

"When I was five, they told me I had a spider bite, even though there was no mark," said Rockwell.

It also strikes internally, primarily in the small intestine.

"When I was in my teens, I just had all this mystery food poisoning," he said. "My parents would just say, ‘Wow, he just has a really sensitive stomach. He's got food poisoning all the time.’"

HAE is rare.

"One in 50,000 people,” Rockwell said. “In the whole state (of Colorado), statistically, there's probably 180 people."

For Rockwell, it was a young doctor in an urgent care who finally figured out what was wrong with him.

"And from that moment on, my life changed dramatically," Rockwell said.

His disease is now treated with this simple solution that includes donated plasma because his body doesn't produce enough of the enzyme that prevents spontaneous swelling.

"So, this is the message: Hey, get out and donate plasma," Rockwell said.

He's to the point he can now self-administer the drug twice a week.
He hasn't had swelling in four years, and offers a message of hope on this National Rare Disease Awareness Day.

"It's so cool. I walked halfway across Spain last summer with this disease. You can live an extraordinary life," Rockwell said. “Don’t ever give up hope.”

Rockwell also spends his time traveling across the country speaking to doctors, nurses and health professionals about his rare disease, in an effort to educate those in the field about the symptoms, signs and treatment options.

“I feel like that gives me purpose,” Rockwell said.


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