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

Patient Stories

Meet Loren

Swimming
Computer
Enthusiast
Camping
My name is Loren. I was born and raised in Riverside, California. I live with my parents and my younger sister, Brooke. I also have an older sister, Riane.
Right now, I spend a lot of time taking care of my grandmother.
I’m interested in getting a job in the computer industry.
What’s your experience with hemophilia and inhibitors?
I was diagnosed with hemophilia about a month or two after I was born. My parents told me that when I was born, I came out purple, so the doctors did some blood work, and quickly diagnosed hemophilia.
This was a big surprise to my parents. Because my mother was adopted, she does not know her family medical history. If anyone in her family ever had hemophilia, she doesn’t know.
My inhibitors were detected after a traumatic event when I was around 1 or 2 years old. I was learning to walk, and I fell against a door, bruising my body from my nose to my groin. My parents brought me to the hospital. They told me that when I was given a factor infusion, I had an allergic reaction. This prompted my doctors to do more tests, and that was when my inhibitors were detected.
What was growing up with hemophilia like for you?
I got a lot of bleeds and bruises growing up. I would get
bruises under my armpits from being picked up. I fell down a
lot when I was learning how to walk and went to the hospital every time I had a bleed. Finally, the doctor inserted a central line and arranged for home care nurses to do my infusions when needed.
I had 3 central lines throughout my childhood. When I was 7 years old, my third line came out because of an infection, and my mom learned to put a needle in my vein and do my infusions.
My mom and others in my family learned how to do my infusions; they helped out a lot during my childhood.
I was out of school a lot. I missed a lot of school because of bleeds, and for every bleed I would be in the hospital for days. My first 5 years were so sporadic that I had to be homeschooled for a while to get my grades up. The school administration was also afraid to allow me on campus because of my tendency to bleed. They feared that I could be hurt in an accident while playing with the other kids, especially since they knew I was getting bleeds just walking around.
My nurse and the nurse coordinator from my hospital came to my school to meet with my principal, and my mom talked with the school nurse and teachers. Once the teachers understood, they explained my condition to my classmates. I lived in the same town all my life and grew up with the same kids, so they warmed up to me. I didn’t go on the playground—not because I wasn’t allowed but because I was on crutches or in a wheelchair for most of my time at school.

"Eventually, I was able to join the swim team."

Growing up, I learned the hard way to never try to hide a bleed. I once hid a bleed from my family because I didn’t want to ruin a family gathering and then another time for my mom’s birthday. I successfully hid it and no one knew, but in each case I could not walk the next day.
When I was 13 years old, I had a massive bleed in my left knee. I needed surgery, and had to be taken out of school to recover. I was in a wheelchair for a year, and then 6 months after I was out of the wheelchair, I had to go through the same process with my right knee. Thankfully, it took less time to recover from that one, and I was back on my feet in 4 months.
What has inspired you to face your inhibitors?
I first went to hemophilia camp when I was 8 years old, and went again when I was 9 and 10.

“Camp was where I learned how to self-infuse. I loved everything about camp, and I still kind of miss it. Now I’m interested in going back as a counselor.”

Hemophilia camp was where I first started to learn about my inhibitors and how they made my hemophilia different. I noticed that the other boys’ infusions only took about 10 minutes while my infusions took 30-40 minutes.
I didn’t get to go as much as I would have liked when I was a kid. As if having severe hemophilia A complicated by inhibitors was not challenging enough, I was diagnosed with diabetes on my tenth birthday when I was in the hospital after I fell out of bed and had a lower back bleed.

“Just as I have learned how to manage
my hemophilia, I have learned to manage my diabetes, and I am able to enjoy life, not letting hemophilia or diabetes define me.”

How else do you find support and inspiration?
I stay involved in the hemophilia community. I recently did a hemophilia walk.

“Being involved with the community
gives me a sense of comfort. I can share my past experiences to help others and meet other people with stories of their own.”

It’s always nice to meet other people with inhibitors and talk about growing up.
What kinds of activities do you enjoy now?
I get exercise by swimming, riding a stationary bike, doing sit-ups, and doing upper body strength work with resistance bands. I also like going for walks. I never really enjoyed sports; I was never able to play them as a kid on crutches and in a wheelchair.
I try to avoid carbohydrates and sweets because of the diabetes.
Tell us about managing your inhibitors.
I go to my hemophilia clinic every 3 months. I get a check-up, the doctor asks me about my bleeds, and I get medical instructions. I have an app on my phone that helps me keep track of my inhibitor level.
There are negatives to living with hemophilia. I can’t do much physical activity. I can’t run or jump or even go on roller coasters. After riding on a small roller coaster at Disneyland, I noticed a hip bruise and decided to stay off roller coasters, even small ones. I didn’t like roller coasters that much anyway, so it’s not that bad.
The worst part of having inhibitors is the time it takes for a bleed to subside.
But, for me, life has gotten better. I understand that bad things can happen at any time, so I try not to overthink things and cause myself unnecessary anxiety.

“On prophylactic treatment, I’ve learned that
luck favors the prepared.”

There are variables throughout life you can’t prepare for, and when I’m more prepared, I have fewer unpleasant surprises.

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 Loren lower his bleeds.

Caregiver
Super Mom
Hemophilia
Walks

Meet Rhea

See her story

Discover what it means to find your True Identity. Get involved in
meetings, and get inspired by patients and caregivers who share their
stories of managing bleeds.

Want to find other types of support? Check out our Tools & Resources section.

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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.