Blog Archive

Sunday, June 26, 2016

A Source of Support and Strength

Trying to “go it alone” is a noble and brave course in the face of adversity, but not always an ideal one, especially if you have a bleeding disorder. There is a huge community filled with caring people, knowledgeable professionals and valuable resources to help you. This week’s blog shares the experience of Casey, who realizes how much he needs the support of the community, especially when it comes to selecting a product that he and his physician believe is right for him and his body’s individual needs.

Indications


ALPROLIX 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.

Your healthcare provider may give you ALPROLIX when you have surgery.

Selected Important Safety Information

Do not use ALPROLIX if you are allergic to ALPROLIX or any of the other ingredients in ALPROLIX.

Please see ALPROLIX.com for the Indications and Important SafetyInformation , as well as the full Prescribing Information.

Growing up, I usually didn’t talk about my hemophilia B. I was the first person in my family to have hemophilia; diagnosed in early childhood. At school, when I would have bleeds, I remember thinking that none of the other kids did. Without a mentor, I kept my emotions to myself, no matter how vulnerable I felt.

My dad gave me my treatments 99% of the time. Always getting the vein on the first stick. However, my mom was a nervous wreck. One time she had to give me a treatment, she tried again and again with no luck. She was in tears. In that moment, she became my motivation to learn how to self-treat. So at the age of 10, I began managing my own hemophilia infusions. It was a liberating feeling. I wasn’t so vulnerable after all.

It was one of my nurses who told me about ALPROLIX. After discussing the risks and benefits with my doctor, he explained that the recommended starting prophy regimens are either 50 IU/kg once weekly, or 100 IU/kg once every 10 days. And that the dosing regimen can be adjusted based on individual response. No two people with hemophilia are alike, so it made sense to me that medication could work differently in everyone. I started on a 10-day schedule, but when I had my labs taken, my doctor told me that I could extend my infusions to once every two weeks. That really fits my busy schedule. Thinking back on my childhood, I never believed infusing every 14 days would be possible.

I didn’t start taking ALPROLIX just for myself. I was also thinking of my two nephews who also have hemophilia. After seeing my experience and talking with their doctors, they started on ALPROLIX, too. I try to help with my nephews when I can. I’ve even occasionally been their caregiver and given them a couple treatments. I make sure they know they have me to look up to if they need advice.

Watching my nephews grow up brings back so many memories of my own childhood. We have a special connection because I understand some of the challenges they face. They have an advantage I didn’t have growing up: a close family member who knows what they’re going through. I can help my nephews in a way no one could help me. My goal is to help them find confidence in themselves and encourage them to have fun being kids.

I hope that by sharing my experiences, I might encourage others to figure out what they have learned from their own experiences and take control over their choices.

Thank you.

To hear from other people living with hemophilia B, check out thesevideos.

Talk to your healthcare team about whether ALPROLIX may be right for you.

This blog was sponsored by Biogen, for educational purposes.

FIX-US-0807    06/2016

 
Bayer