Real people, real stories: Videos and firsthand accounts of life with hemophilia
Important Safety Information | Prescribing Information
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Meet Max and Eli, Part 1: Active twin boys with hemophilia B
Lisa: My name is Lisa, and my husband is Bradley. We have 2 twin boys, Max and Eli. They both have severe hemophilia B.
Brad: Hi, my name's Brad. I'm married to Lisa. We have 2 wonderful children, Max and Eli. They're almost 2 years of age. Lisa and I have been married for 6 years, and we've been together for well over 10 years. Max and Eli, they're twins. They have each other; they have their distinct differences. Max loves structure. He loves to throw things away, he loves to do the laundry, he's very polite; and Eli, he's a free spirit. Just the other day in the park, he took off down the path. I was standing still just kind of thinking, okay, in about 10 feet he's just going to stop and look back. Well, sure enough, he kept going. So, I can't sit still anymore. We're constantly chasing him around. But Max, he'll be a little hand-holder.
Lisa: I always knew that my father had hemophilia; yet it wasn't something that was really spoken about in my family. When Brad and I were talking about having children and we became pregnant, we met with a genetic counselor—obviously, we spoke about hemophilia in the family. Brad and I did not want to know what sex the babies were, but we decided just to get educated in case we did have babies that had hemophilia.
Brad: We pretty much knew at the hospital that one of them—I think it was Eli—had it because he had some bleeding from his heel stick. In our minds we thought, okay, one has it, but the other one—maybe not, because he had no trouble with the heel stick at the hospital. So when we got the diagnosis that they both had hemophilia, it was a big shock to us. I mean, we were almost expecting to hear that one of them had it, but to hear that both really kind of did floor us for a while.
What Is BeneFIX?
BeneFIX® Coagulation Factor IX (Recombinant) is an injectable medicine that is used to help control and prevent bleeding in people with hemophilia B. Hemophilia B is also called congenital factor IX deficiency or Christmas disease.
BeneFIX is NOT used to treat hemophilia A.
Important Safety Information for BeneFIX
- BeneFIX is contraindicated in patients who have manifested life-threatening, immediate hypersensitivity reactions, including anaphylaxis, to the product or its components, including hamster protein.
- Call your health care provider right away if your bleeding is not controlled after using BeneFIX.
- Allergic reactions may occur with BeneFIX. Call your health care provider or get emergency treatment right away if you have any of the following symptoms: wheezing, difficulty breathing, chest tightness, your lips and gums turning blue, fast heartbeat, facial swelling, faintness, rash or hives.
- Your body can make antibodies, called “inhibitors,” which may interfere with the effectiveness of BeneFIX.
- If you have risk factors for developing blood clots, such as a venous catheter through which BeneFIX is given by continuous infusion, BeneFIX may increase the risk of abnormal blood clots. The safety and efficacy of BeneFIX administration by continuous infusion have not been established.
- Some common side effects of BeneFIX are nausea, injection site reaction, injection site pain, headache, dizziness and rash.
Please see full Prescribing Information for BeneFIX.
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In their own words
From common-sense solutions to redefining independence through advocacy and education, these families have found the way to healthy living with hemophilia. Watch these videos for an inside look at their journeys.
