Patient Stories

Results from treatment with KALBITOR may vary.  Talk to your doctor to find out if KALBITOR is right for you.  Make sure to read KALBITOR Important Safety Information regarding severe allergic reactions and review the Medication Guide before getting treatment with KALBITOR.

 

Joan's story

For Joan, a week and a half made all the difference.

Just 10 days or so after her local hospital stocked its first supply of KALBITOR for her, she awoke on a Saturday morning with an acute attack of hereditary angioedema (HAE). Unlike most of her other attacks, this time she felt the swelling in the front of her throat and knew it was an emergency.

“I couldn’t swallow,” she recalls. “I was so scared. I threw on my clothes and raced to the hospital 10 minutes away. Thank goodness we made sure that KALBITOR was stocked there for me. In just a few hours I was back home. I just sat down and cried because I was so happy.”

Joan has had hereditary angioedema (HAE) attacks since age 7. As with many people, HAE runs in her family; her father, aunt, and three of her brothers and sisters have it.

Sometimes Joan experiences acute HAE attacks as often as every other week. Two severe attacks affecting her larynx led to two tracheotomies, which are surgical incisions through her neck and into her windpipe to make a breathing hole. The surgeries left her windpipe so narrowed from scar tissue that it’s only about the width of a straw.

Because KALBITOR has been effective for her, Joan is now considering using KALBITOR to treat her acute HAE attacks in other locations. “I don’t always have swelling in my neck – it happens in every part of my body,” she says. “When I’ve had swelling in my feet, I’ve just had to deal with it. Now I know I can go to the hospital and get treatment for my acute HAE attacks with KALBITOR shots. I’ll never be able to thank Dyax enough for this.”

Greg's story

Because he has no known family members with hereditary angioedema (HAE), Greg’s diagnosis at age 18 came as a complete surprise. “I’m the lucky one,” he says wryly.

Greg has lived with the unpredictability that HAE brings ever since his first attack about 20 years ago. He takes steroids regularly to help prevent attacks, but even while on therapy, attacks still happen.

“I frequently have breakthrough attacks even though I’m on steroids,” he says. “I could have one a month for four months and then none for the next six months. There’s no way of knowing when it will happen. That’s the scary part.”

Greg’s attacks have occurred in his hands, feet, knees, and arms. He has had some painful abdominal attacks but rarely facial swelling, and so far he has been spared from swelling in his throat.

Greg volunteered to use KALBITOR during clinical trials, while it was being tested in HAE patients prior to its FDA approval. “I took KALBITOR in the midst of a big attack, and it worked great for me,” he recalls. “What happens during an attack is that you feel like your skin is being blown up like a balloon with a pump – it gets tighter and tighter. With KALBITOR, I could feel the tightness start to back off.”

KALBITOR is now available to Greg at his doctor’s office, and he is working with KALBITOR Access to have it stocked at the emergency department of his local hospital, which is closer to his home.

Life with HAE can be complicated even when attacks are infrequent. “It’s always on your mind,” he says. “For all of your decisions, you have to incorporate HAE into them.”

However, today’s treatment options are opening more doors, he says. “It’s increasingly easier to manage your HAE. It takes some work and energy to set up your treatment plan, but it’s worth it because it assures that you are prepared for your next attack. Having KALBITOR available is so significant. I think it’s important that the HAE community comes together to embrace these therapies, to make sure they remain available.”