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FALL 2010 Newsletter the villager newsletter Providing information and inspiration to the hemophilia community.

HE ADOPTED A SON.
THE COMMUNITY ADOPTED HIM.

Meet Phil. Aerospace engineer. Parent. And hemophilia Ambassador.

Meet Phil, a retired aerospace aircraft engineer living in Arizona. Phil has a Master's in English, is an avid reader, plays the piano, and sings.

Phil has a lot going for him and travels the world in search of new places and experiences.

Making a case for fatherhood

As a young man growing up with hemophilia B, Phil always believed he was fortunate and wanted to give something back to the community. So when the time was right, he started the process of adopting a son with hemophilia. "I had a great job. I had the desire, but the case worker was concerned about my hemophilia. She didn't think I was a 'normal' father."

As you might expect, Phil had different ideas. "I assured her it would be okay because I could hit the ground running...I knew about infusing...I knew what to expect...and that's why the adoption worked out so well in the end."

Phil is pleased to say that his adopted son, Ammon, now 20, enjoys good physical health.

The road to success

There was a time back in the 1980s when Phil had challenges finding a therapy that met his needs. In 1997, Phil found what he'd been searching for—BeneFix. "It gave me confidence...I don't really think much about hemophilia now," says Phil.

BeneFix is contraindicated in patients who have manifested life-threatening, immediate hypersensitivity reactions, including anaphylaxis, to the product or its components, including hamster protein.

An Ambassador working for the community

Phil feels a connection to the patients and caregivers he's met since becoming a hemophilia B Ambassador. "I've met parents who are concerned about how their product is made...they want a product with years of experience," says Phil. "I try to help parents realize why I feel so strongly about the progress in therapy, and that things are different from when I learned about my hemophilia." Phil adds, "Young people today can manage their treatment on demand and can also take a preventive approach."

Phil is happy in his role, helping family and community live healthier, happier lives. As Phil puts it, "I've got a lot to be thankful for."

Learn more at BeneFIX.com.

What Is XYNTHA?

Xyntha® Antihemophilic Factor (Recombinant), Plasma/Albumin-Free is indicated for the control and prevention of bleeding episodes in patients with hemophilia A (congenital factor VIII deficiency or classic hemophilia) and for surgical prophylaxis in patients with hemophilia A.

XYNTHA does not contain von Willebrand factor and, therefore, is not indicated in von Willebrand's disease.

Important Safety Information for XYNTHA

  • Allergic reactions are possible with XYNTHA. Signs of an allergic reaction may include hives, rash with itching, chest tightness, difficulty breathing, faintness, or fast heartbeat. XYNTHA contains trace amounts of hamster protein. You may develop an allergic reaction to these proteins. Tell your doctor if you have had an allergic reaction to hamster protein.
  • Call your doctor right away if bleeding is not controlled after using your factor VIII replacement therapy; this may be a sign of an inhibitor. Inhibitors have been observed in patients receiving factor VIII products, including XYNTHA.
  • The most common adverse reaction in study 1 (safety and efficacy study) is headache (24% of subjects) and in study 2 (surgery study) is fever (41% of subjects). Other common side effects of XYNTHA include nausea, vomiting, diarrhea, or weakness.
  • XYNTHA is an injectable medicine administered by intravenous (IV) infusion. Local irritation may occur when infusing XYNTHA after reconstitution in XYNTHA Solofuse.

Please see full Prescribing Information for XYNTHA.

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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