Teen battling life-threatening disease
For more on Hereditary Angioedema, visit www.HAEandME.com.
The saying “mind over matter” is a well-known mantra, but for Rebecca Reed, 17, it’s what’s kept her going in her roughest moments.
Reed was diagnosed last year with Hereditary Angioedema, a rare and potentially life-threatening disease that causes swelling attacks in the body — in her case, laryngeal attacks that have several times inhibited her breathing. The first time she remembers an attack, she was in fifth grade and dealt with it for several years, thinking it was an allergy of some kind.
The year before she was diagnosed was when everything changed.
“One year earlier — that’s when the quest began,” said Kimberly, Reed’s mother. “After getting a birth control shot, that kicked it into high gear.”
One doctor at St. Joseph Health, St. Mary knew another HAE patient in the High Desert, Beth Combee, a close friend to Kimberly, who had no idea her friend also had the same disease as her daughter.
“Honestly, it was some kind of divine intervention. They had a special connection from the get-go. To me, that was proof there’s a plan,” Kimberly said.
That led them to look in the right place. After trying several medications, including antibiotics, which never worked for Reed’s condition, they were able to find a doctor that treats HAE in Santa Monica, Dr. Raffi Tachdijan, who tested her for the missing C1-INH protein that triggers the inflammations.
“Up until four years ago, there were very archaic treatments,” Dr. Tachdijan said. “Since then, we’ve got prophylactic therapy, so that there are not as many attacks, or none at all. Replacing that protein prevents attacks.”
Although having a definitive diagnosis has significantly lessened the stress for the teen, her life is no longer normal — but it’s normal for her, she said. Reed used to play volleyball in high school, but now even walking or dancing too much causes an attack. But having the right medication, she “just deals with it”.
“The attacks have been cut in half, and the severity is not what it was. I only get a couple a week, unless I antagonize my body,” Reed said.
Reed still coaches little girls’ volleyball to stay involved in the sport and is planning on attending Victor Valley College in the fall, hoping to get a degree without the setbacks she experienced in her prior school years. Reed missed most of her senior year, but took 26 courses at home, finishing her last two years of high school in nine months.
Originally, Reed was also not allowed to attend prom or walk with her graduating class, but after much advocating on her mother’s part, was able to attend both with an accompanying nurse. Kimberly fought hard to make sure the school district realized that Reed had a right to attend, just like any normal teen.
“And she did it. She did it, dealing with her condition, and the hospital, and surgery, having a port (put in her throat),” Kimberly said. “I just remember her grabbing her throat and saying, ‘Mom, don’t let me die.’ ”
Reed has had her share, perhaps too much a share, in hospitalization, but has kept a realistic, composed attitude throughout. According to the All About HAE website, 15 percent to 33 percent of people with the disease die from the attacks.
“You must be prepared, and as often as these attacks attack her throat, it’s terrifying. Her attitude through this is something to be admired,” Kimberly said. “Even at times when she’s had it, that’s her taking control of her body. ‘I just have today, that’s all I know I have,’ she says. That’s the realism that she has with this. I’m so proud of her.”
Despite her struggles in school, dealing both with the district and bullying kids, Reed has made it through and has big plans for her future. After finishing at Victor Valley College, Reed plans on attending University of California, Los Angeles to earn a doctorate in psychology.
“I think it’d be awesome to work at a residential place or help teenagers — I’ll be able to relate to them,” Reed said.
Dealing with the disease requires a strength in attitude, perspective and character, all of which Reed has. She even jokes when her lips swell that she has “free Botox,” according to Kimberly.
“It’s mind over matter. It is whatever you tell yourself, and it’s all about being positive. And surrounding yourself with good people,” Reed said. Reed even tattooed the phrase, “mind over matter” across her chest as a reminder of what gets her through every day.
“It doesn’t make it OK if my worst fear happens,” Kimberly said, “but she’s living as much as she can and she’s happy.”