Meet Rhea, Real FEIBA [Anti-Inhibitor Coagulant Complex] Patient

Patient Stories

Meet Rhea

Caregiver
Super Mom
Hemophilia
Walks
My husband, Timothy, and I are parents of 2 wonderful children, Timmy and Timea.
What’s your experience with hemophilia and inhibitors?
When Timmy was born, he was diagnosed with severe hemophilia A; when he was 7 months old, he was discovered to have inhibitors.
My family has a long history of hemophilia. My uncle and a few of my cousins have had hemophilia. When I was 16 and had prolonged, uncontrolled bleeding after a tonsillectomy, my doctors told me I was a symptomatic carrier. At age 31, I was diagnosed with mild hemophilia.
Clearly, hemophilia is not a foreign world to me, but inhibitors were.
Tell us about Timmy’s treatment journey.
When Timmy was 7 months old, the doctors recommended inserting a port. It made infusions easier until it became infected. The port had to be removed. Timmy was treated with antibiotics and another catheter was inserted. That worked well until he pulled it out after a bath. After that, the doctor put in a peripherally inserted central catheter—a PICC—in his arm.
Timmy had frequent bleeds and was in the hospital nearly every weekend. His first really bad bleed was a knee bleed that developed when he started crawling. When he was 3, another port was inserted; he has had it since then.
Timmy is now on prophylactic treatment with FEIBA [Anti-Inhibitor Coagulant Complex] per his doctor’s recommendation. This has made a huge difference in Timmy’s life and all of ours. He doesn’t experience nearly as many bleeds. He has gone from being in the hospital nearly every weekend to only going a few times a year.

“Because of FEIBA prophylactic treatment, my Timmy can live his life with so much less worry about bleeds.”

With FEIBA prophylactic treatment, Timmy has more time to be active. Being able to run around and play is what a little boy like Timmy needs and deserves. It builds up his strength and confidence.
How do you and your family manage Timmy's inhibitors?
It has been a great help for me to have an Associate’s Degree as a Medical Assistant. I had already been formally trained to infuse, so I can infuse Timmy when I need to.
It was hard to know when Timmy had a bleed as a baby. He rarely cries or complains about anything. Bleeding was really only evident when I saw swelling or bruising. Now that Timmy is 10 years old, he describes his pain on a 10-point scale. Because of his nature, though, I know that his 5 is really any other person’s 9.
Timmy’s hemophilia has not held him back in school. I am so happy that we’ve been able to keep Timmy on track considering all the days of school that he missed.
When he was in 4th grade, we made sure Timmy was on an individualized education program, or IEP, which documents that he has a chronic illness, so the school can be more lenient with him when it comes to deadlines for homework and tests.
Aside from the limitations set by how often Timmy has been out of school, there are also the limitations of how he can play at school. Every year, someone from the hemophilia treatment center (HTC) comes out to the school to instruct teachers and nurses on how to treat Timmy if something should happen at school.
Between missing so much school, and not being able to play the same way that the other kids do, Timmy doesn’t have the best life at school. There is plenty of teasing because Timmy is different, and it is often frustrating for him.
How else do you and Timmy find support and inspiration?
Luckily, we have a huge family so Timmy has lots of friends and a very loving, supportive group for him at home.
Timmy sees his hematologist and nurses at the HTC once every 6 months. Once a year, he also sees a physical therapist who evaluates his joints and a social worker who talks to him about school and other kids and makes sure he is where he should be in maturity and understanding.

“Timmy is 150% boy. He seems to have boundless energy, running around every chance he gets.”

I’ve noticed from talking with other parents of children with hemophilia that a lot of their boys have the same kind of energy as Timmy. We like to harness that energy into fun, low-risk activities such as swimming and biking. We like to go for bike rides with his dad and sister. He also loves the playground.
We try to be sure that Timmy is as protected as he can be when he is playing, with a helmet and pads on when we go biking.
Are you involved with the community and camp?
“I like to help with the events.
I try to be an advocate for the newer members.”
I like being involved with the hemophilia community. When Timmy was 3, I started going to events. My family and I also like to participate in the fundraisers. Last year we got our church involved in a walk, and we had one of the biggest teams ever.
During discussions at community events, I like to step up and ask the questions that new parents might not be asking. The people in charge can count on me to help out and keep the conversation moving.

“Timmy went to hemophilia camp for the first time last year, and he was in love with it. It was amazing for him to be able to go out and play with no worries about other kids being too rough—everyone there knows what he’s going through.”

The activities at these hemophilia community events are specially chosen to be low risk. He loved being able to choose from all the options rather than having to limit himself. At camp he had the opportunity to see kids younger than him trying to learn to manage their hemophilia.
What have you learned from being a caregiver?
I have been around hemophilia my whole life, and I have been fortunate to see the advances in treatment options in the last few decades.

“One of the most significant things I have learned from having a child with a chronic illness is that not every setback is an unmanageable tragedy.”

I have learned not to “sweat the small stuff.” There is just so much going on in everyday life that any other problems, like drama at work, won’t even faze me anymore. Nothing is as challenging as what my loved ones and I have gone through.

Not all activities are appropriate for all people. Be sure to consult your physician or treatment center before beginning any exercise program or participating in sporting activities. If an injury occurs, contact your physician or treatment center immediately for the appropriate treatment.

You should be trained on how to do infusions by your hemophilia treatment center or your healthcare provider.

Using prophylaxis with FEIBA for his treatment routine helped Timmy lower his bleeds.

Swimming
Computer
Enthusiast
Camping

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FEIBA [Anti-Inhibitor Coagulant Complex] Indications

What is FEIBA used for?
FEIBA (Anti-Inhibitor Coagulant Complex) is used for people with Hemophilia A or B with Inhibitors to control and prevent bleeding episodes, before surgery, or routinely to prevent or reduce the number of bleeding episodes. It is NOT used to treat bleeding conditions without inhibitors to Factor VIII or Factor IX.

Detailed Important Risk Information

When should I not take FEIBA?
You should not take FEIBA if you have had hypersensitivity or an allergic reaction to FEIBA or any of its components, including factors of the kinin generating system, if you have a condition called Disseminated Intravascular Coagulation, which is small blood clots in various organs throughout the body, or currently have blood clots or are having a heart attack. Make sure to talk to your healthcare provider about your medical history.

What Warnings should I know about FEIBA?
FEIBA can cause blood clots, including clots in the lungs, heart attack, or stroke, particularly after high doses of FEIBA or in people with a high risk of blood clots. Patients that have a risk of developing blood clots should discuss the risks and benefits of FEIBA with their healthcare provider since FEIBA may cause blood clots. FEIBA can cause hypersensitivity or allergic reactions and infusions site reactions, and these reactions can be serious. Because FEIBA is made from human plasma, it may carry the risk of transmitting infectious agents, for example, viruses, including Creutzfeldt-Jakob disease (CJD) agent, and the variant CJD agent. Although steps have been taken to minimize the risk of virus transmission, there is still a potential risk of virus transmission.

What should I tell my healthcare provider?
Make sure to discuss all health conditions and medications with your healthcare provider. If you are pregnant or are planning to become pregnant, or are a nursing mother, make sure to talk with your healthcare provider for advice on using FEIBA.

What are the side effects of FEIBA?
The most frequent side effects of FEIBA are: low red blood cell count, diarrhea, joint pain, hepatitis B surface antibody positivity, nausea, and vomiting. The most serious side effects of FEIBA include: hypersensitivity reactions, including anaphylaxis, stroke, blood clots in the lungs, and blood clots in the veins. Always immediately talk with your healthcare provider if you think you are experiencing a side effect.

What other medications might interact with FEIBA?
The use of other clotting agents with FEIBA is not recommended, for example, tranexamic acid and aminocaproic acid. Be sure to talk with your healthcare provider and pharmacist about all medications and supplements you are taking.

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.

The risk information provided here is not comprehensive. To learn more, talk about FEIBA with your healthcare provider or pharmacist. The FDA-approved product labeling can be found at http://www.feiba.com/us/forms/feiba_pi.pdf or by calling 1-800-423-2090 and selecting option 5.