Providing information and inspiration to the hemophilia community.
A STUDENT WHO'S ANYTHING
BUT AVERAGE

Meet Phil. Aerospace engineer. Parent. And hemophilia Ambassador.
In many ways, Tony is just like any 19 year old starting his first year of college. He's been getting used to campus life, grooving on music, and studying hard.
But, while most college students are adjusting to their newfound independence, Tony has another hurdle to overcome.
"Two weeks ago, I infused myself for the first time," said Tony, who has severe hemophilia B. Before taking the step to self-infuse, Tony had to receive his therapy by seeing the nurse on campus.
"Now that I am self-infusing, I don't think about having hemophilia as much. I feel ready, and don't have to plan my trips to the nurse's office; I just do it myself."
Tony says he's been using BeneFIX® Coagulation Factor IX (Recombinant) for as long as he can remember. "Being busy, I'm able to just come back to my room, infuse with the R2 Kit, and then go."
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.
Mother knows best.
"My mom grew up with 2 brothers who had hemophilia, so when I was diagnosed, she was prepared." Tony's mom gave him a feeling of confidence that he could do anything he set his mind to. Tony says his mom was willing to let him try more things, even when it came to sports. "She never really limited me," said Tony, "but taught me to know when self-control was needed, and not to let hemophilia rule my life."
Some common side effects of BeneFIX are nausea, injection site reaction, injection site pain, headache, dizziness and rash.
Working out. Speaking out.
Tony does what he can to keep in shape. "I do lift some weights, more for toning with a lot of reps, and I try to exercise as much as I can."
Lately, Tony has also been exercising his public speaking skills. He recently attended an NHF convention in Florida and was surprised when he was asked to be a speaker.
"I really enjoy speaking and answering questions. It helps me accept my hemophilia and grow with it as a person."
As an Ambassador (see program details on the left), Tony speaks with teenagers as well as their parents. "After I speak with parents, I think it might be easier for them to let their kids be active without being so protective."
Tony's advice for anyone who has hemophilia? "Always remember to take care of yourself before you have fun. Talk to your friends and educate them…it's better for them to learn from an educated source. And you're probably the most educated source they know."
Most of all, "It's important to be who you are by owning up to your hemophilia, rather than hiding it."
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.
CURRENT STORIES
creating happy campers
in the camp of success
camps out
from Pfizer
COMMUNITY EVENTS
There are many ways to raise awareness for hemophilia and other bleeding and clotting disorders. Getting involved with your local chapter is a great first step. Chapter events may include walks, golf tournaments, and rock festivals, just to name a few. Inspiring community events are only as limited as your imagination!
Contact the NHF at hemophilia.org or your local NHF chapter to learn more.
Oklahoma Hemophilia Foundation Golf Tournament
September 23, 2011
Oklahoma City, OK
Hemophilia of Indiana Walk
September 24, 2011
Fort Harrison, Indianapolis, IN
Hemophilia Foundation of North Carolina Walk
October 15, 2011
Lake Crabtree County Park
Morrisville, NC
Quick Poll
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