Marina's Story
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 serious allergic reactions and review the Medication Guide before getting treatment with KALBITOR.
At age 16, Marina has become a teacher of sorts, educating the adults around her about hereditary angioedema (HAE) and how her sudden HAE attacks should be managed.
Diagnosed in June 2010, Marina has dealt with frequent HAE attacks, severe pain, hospitalizations, and the need to put her once-active life on hold. Through it all, she maintains a strong, positive attitude and a maturity beyond her years.
"For a long time, no one knew what was wrong with me," Marina recalls. "I was the first patient my pediatrician had ever seen with HAE. We had to educate the fire departments in our surrounding towns, and the ambulance services, and the two hospitals closest to where I live, about what to do for me. No one knows what it is, so I try to speak up for myself as much as I can."
Marina manages her HAE with a two-fold treatment plan: regular therapy to prevent most attacks, and KALBITOR for those HAE attacks that still occur. She received her first KALBITOR treatment while recovering from a severe acute attack in the intensive care unit. When the drug worked, Marina and her family contacted KALBITOR Access® to arrange on-demand treatment availability for her future attacks. "We were so lucky that KALBITOR was available," says her mother, Lisa. "Our health insurance approval was instantaneous. KALBITOR was set up and ready for her in weeks."
Having a plan to help reduce the frequency of attacks, as well as a plan to treat them if they do occur, helps Marina and her family feel a little more in control. "I feel like I'm doing everything that I can for my HAE," Marina says. "Having an HAE attack is not fun. It is painful and it makes me feel weak and tired. But now that I have a treatment plan in place, it feels more manageable."
Marina says that after taking KALBITOR, she feels great relief. "It works really good for me. It starts working in about 45 minutes to an hour. I'm usually stubborn if I feel an attack coming and try to wait it out, but I'll always go to the hospital to take KALBITOR if I feel the attack in my stomach or throat."
Marina's doctors have said she needs to temporarily give up playing the sports she loves, especially softball, because the activity could trigger an HAE attack. Although she's been unable to return to school this year because of the frequency of her attacks, she works with a tutor and recently made high honors. When she's not studying, she spends time with friends and has been listening to and learning about music.
Looking to the future, Marina says she'd like to become an ER nurse, or perhaps go in a different direction and become a music producer. "My life has changed a lot since I was diagnosed," she says. "I can't play sports or go to school, but it's important to keep a positive outlook. I'm lucky because I have a good support system from my family."
A certain quote carries deep meaning for Marina: "You're given this life because you're strong enough to live it." Marina's strength, intelligence, and maturity—combined with her thorough treatment plan—overshadow the challenges of living with HAE.