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Healthcare Professionals

Meet Barrin

Barrin at a Glance
Patient
Camp
Parent

Barrin–On how growing up with hemophilia A made him a stronger person

When did you find out you had hemophilia A?

I was diagnosed at nine months old after my mother noticed bruising on my stomach and waist when she’d take me out of my baby walker. I’ve been told that my hemophilia A was caused by a spontaneous gene mutation, but I came to find out that my father and an uncle both had mild cases of hemophilia. They didn’t even know they had it until they tried to enlist in the U. S. Army. Needless to say, they weren’t allowed to join.

What was growing up with hemophilia A like for you?

It’s important to me to be a True ID speaker because when I was growing up in rural Alabama, I didn’t know another living soul who had hemophilia. It was pretty lonely, and I didn’t like to get involved in anything where I might possibly get hurt and have a bleed. So, I didn’t really play with the other kids my age, as much as I would have liked to. My classmates couldn’t understand why I’d show up on crutches one day, and then a day or two later, I’d be walking okay. They told me I was faking and there was a certain amount of bullying involved. There were times when I thought I was the only person in the world with hemophilia A, and I was frequently in a dark place because of this. I think a lot of kids with bleeding disorders aren’t as active as they could be because they’re afraid of getting hurt. So, if hearing my story can inspire just one person to have the courage to take control of their hemophilia and get out there, what I’ve been through will serve a purpose. Just remember that certain activities may not be right for everyone with hemophilia A, so you should always talk to your doctor first.

“If hearing my story can inspire just one person to have the courage to take control of their hemophilia and get out there, what I’ve been through will serve a purpose.”
When did you start meeting other people with bleeding disorders?

I began going to hemophilia camp in the summer, and that helped my self-esteem quite a bit. I learned to self-infuse when I was 11 or 12, and that was a big milestone. I was able to treat myself without having to rely on my mom, or a healthcare professional. It was also the first step on my road to independence. But, you should be trained by your hemophilia treatment center or your healthcare provider before you self-infuse. Years later, when I went off to college, I met a group of people who accepted me for who I am, and they seemed to understand what hemophilia was all about. As it turned out, during junior year, my roommate also had hemophilia. So, I actually wasn’t the only person at that college with a bleeding disorder!

How did you find out about ADYNOVATE® [Antihemophilic Factor (Recombinant), PEGylated]?

Not too long ago, a Shire territory business manager told me about ADYNOVATE [Antihemophilic Factor (Recombinant), PEGylated]. At my next appointment, my doctor and I discussed ADYNOVATE and its twice-weekly dosing regimen and the fact that if used regularly, it may reduce the number of bleeds I’d been experiencing. He also explained that ADYNOVATE is used on-demand to control bleeding in patients with hemophilia A. We also talked about the potential side effects such as headaches and nausea. He told me ADYNOVATE was not for people who are allergic to mice or hamster protein, or who are allergic to any ingredients in ADYNOVATE or ADVATE® [Antihemophilic Factor (Recombinant)]1. I agreed to give it a try. I was impressed with how effective ADYNOVATE was–and still is–for me.

I have been on ADYNOVATE and so far I’ve had one bleed. My doctor and I are happy with how I’ve responded to ADYNOVATE. But, keep in mind that this is my personal experience; you might have a different experience. That’s why you should talk to your doctor to see if ADYNOVATE is right for you. And when you have that talk, make sure to ask any questions you have about the product’s safety and efficacy, your treatment plan, and getting infusion training if you need it.

I’ve had a lot of product support from Shire, but I’m very self-sufficient. Also, because I was eligible, I have received co-pay assistance from Shire, which is a big help. The Territory Business Manager (TBM) will call to see if I have any questions about ADYNOVATE.

What kind of advice do you give other hemophilia A patients?

If you’re living with hemophilia A, I encourage you to take good care of yourself. You are the only one who is in charge of your life, and you have to make good decisions for yourself. Talk to your doctor. Get with the folks at your hemophilia treatment center. Get involved with the hemophilia community. I’ve worked hard throughout my life to do the best that I can for myself, and not only am I glad I did, my children are also glad I can be involved in their lives.

Detailed Important Risk Information
Prescribing Information (PI)
ADYNOVATE [Antihemophilic Factor (Recombinant), PEGylated] Important Information
Indications

ADYNOVATE is an injectable medicine that is used to help treat and control bleeding in children and adults with hemophilia A (congenital Factor VIII deficiency). Your healthcare provider may give you ADYNOVATE when you have surgery. ADYNOVATE can reduce the number of bleeding episodes when used regularly (prophylaxis).

ADYNOVATE is not used to treat von Willebrand disease.

DETAILED IMPORTANT RISK INFORMATION

You should not use ADYNOVATE if you:

  • Are allergic to mice or hamster protein
  • Are allergic to any ingredients in ADYNOVATE or ADVATE [Antihemophilic Factor (Recombinant)]

Tell your healthcare provider if you are pregnant or breastfeeding because ADYNOVATE may not be right for you.

You should tell your healthcare provider if you:

  • Have or have had any medical problems.
  • Take any medicines, including prescription and non-prescription medicines, such as over-the-counter medicines, supplements or herbal remedies.
  • Have any allergies, including allergies to mice or hamsters.
  • Have been told that you have inhibitors to factor VIII (because ADYNOVATE may not work for you).

Your body may form inhibitors to Factor VIII. An inhibitor is part of the body’s normal defense system. If you form inhibitors, it may stop ADYNOVATE from working properly. Consult with your healthcare provider to make sure you are carefully monitored with blood tests for the development of inhibitors to Factor VIII.

You can have an allergic reaction to ADYNOVATE.
Call your healthcare provider right away and stop treatment if you get a rash or hives, itching, tightness of the throat, chest pain or tightness, difficulty breathing, lightheadedness, dizziness, nausea or fainting.

The common side effects of ADYNOVATE are headache and nausea. Tell your healthcare provider about any side effects that bother you or do not go away.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Click here for ADYNOVATE full Prescribing Information.



ADVATE [Antihemophilic Factor (Recombinant)] Important Information
Indications

ADVATE is a medicine used to replace clotting factor (factor VIII or antihemophilic factor) that is missing in people with hemophilia A (also called “classic” hemophilia). ADVATE is used to prevent and control bleeding in adults and children (0-16 years) with hemophilia A.
Your healthcare provider may give you ADVATE when you have surgery.
ADVATE can reduce the number of bleeding episodes in adults and children (0-16 years) when used regularly (prophylaxis).

ADVATE is not used to treat von Willebrand disease.

DETAILED IMPORTANT RISK INFORMATION

You should not use ADVATE if you:

  • Are allergic to mice or hamsters.
  • Are allergic to any ingredients in ADVATE.

Tell your healthcare provider if you are pregnant or breastfeeding because ADVATE may not be right for you.

You should tell your healthcare provider if you:

  • Have or have had any medical problems.
  • Take any medicines, including prescription and non-prescription medicines, such as over-the-counter medicines, supplements or herbal remedies.
  • Have any allergies, including allergies to mice or hamsters.
  • Have been told that you have inhibitors to factor VIII (because ADVATE may not work for you).

Your body may form inhibitors to factor VIII. An inhibitor is part of the body’s normal defense system. If you form inhibitors, it may stop ADVATE from working properly. Consult with your healthcare provider to make sure you are carefully monitored with blood tests for the development of inhibitors to factor VIII.

You can have an allergic reaction to ADVATE.
Call your healthcare provider right away and stop treatment if you get a rash or hives, itching, tightness of the throat, chest pain or tightness, difficulty breathing, lightheadedness, dizziness, nausea or fainting.

Side effects that have been reported with ADVATE include: cough, headache, joint swelling/aching, sore throat, fever, itching, dizziness, hematoma, abdominal pain, hot flashes, swelling of legs, diarrhea, chills, runny nose/congestion, nausea/vomiting, sweating, and rash.
Tell your healthcare provider about any side effects that bother you or do not go away or if your bleeding does not stop after taking ADVATE.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Click here for ADVATE full Prescribing Information.