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 and Detailed Important Risk Information for Patients

Indications for FEIBA

FEIBA is an Anti-Inhibitor Coagulant Complex approved for use in hemophilia A and B patients with inhibitors for:

  • Control and prevention of bleeding episodes
  • Use around the time of surgery
  • Routine prophylaxis to prevent or reduce the frequency of bleeding episodes.

FEIBA is NOT for use in the treatment of bleeding episodes resulting from coagulation factor deficiencies without inhibitors to factor VIII or factor IX.

Detailed Important Risk Information for FEIBA

WARNING: EVENTS INVOLVING CLOTS THAT BLOCK BLOOD VESSELS

  • Blood clots that block blood vessels and their effects have been reported during post-marketing surveillance following infusion of FEIBA, particularly following administration of high doses (above 200 units per kg per day) and/or in patients at risk for forming blood clots.
  • If you experience any of these side effects, call your doctor right away.

Who should not use FEIBA?

You should not use FEIBA if:

  • You had a previous severe allergic reaction to the product
  • You have Disseminated Intravascular Coagulation (DIC), or signs of small blood vessel clots throughout the body
  • You have sudden blood vessel clots or blocked blood vessels, (such as, heart attack or stroke)

What other important information should I know about FEIBA?

Events involving blood clots blocking blood vessels (such as blood clot in vein, blood clot in the lung, heart attack, and stroke) can occur with FEIBA, particularly after receiving high doses (above 200 units per kg per day) and/or in patients with risk factors for clotting.

Events of thrombotic microangiopathy (TMA), a condition where blood clots and damage occur in small blood vessels, were reported in an emicizumab (Hemlibra®) clinical trial where patients received FEIBA with emicizumab as part of a treatment plan for breakthrough bleeding. The safety and efficacy of FEIBA for breakthrough bleeding in patients receiving emicizumab has not been established. If you take, or anticipate taking, FEIBA with emicizumab, tell your doctor, since they will need to closely monitor you.

At first sign or symptom of a sudden blood vessel clot or blocked blood vessel (such as chest pain or pressure, shortness of breath, fever, altered consciousness, vision, or speech, limb or abdomen swelling and/or pain), stop FEIBA administration right away and seek immediate emergency medical treatment.

Infusion of FEIBA should not exceed a single dose of 100 units per kg body weight and daily doses of 200 units per kg of body weight. Maximum injection or infusion rate must not exceed 2 units per kg of body weight per minute.

Allergic reactions, including severe, sometimes fatal allergic reactions that can involve the whole body, can occur following the infusion of FEIBA. Stop using FEIBA promptly and call your doctor or get emergency treatment right away if you get a rash, hives or welts, experience itching, tightness of the throat, vomiting, abdominal pain, chest pain or tightness, difficulty breathing, lightheadedness, dizziness, nausea or fainting.

Because FEIBA is made from human plasma it may carry a risk of transmitting infectious agents, such as viruses, variant Creutzfeldt-Jakob disease (vCJD) and, theoretically, the Creutzfeldt-Jakob disease (CJD).

What are the possible side effects of FEIBA?

The most common side effects observed during the prophylaxis clinical study were low number of red blood cells, diarrhea, bleeding into a joint, positive test for hepatitis B surface antibodies, nausea, and vomiting.

The serious side effects seen with FEIBA are allergic reactions and clotting events involving blockage of blood vessels, which include stroke, blockage of the main blood vessel to the lung, and deep vein blood clots.

Call your doctor right away about any side effects that bother you during or after you stop taking FEIBA.

What other medications might interact with FEIBA?

Talk with your doctor about the possibility of formation of blood clots when taking drugs that may prevent clot breakdown such as tranexamic acid, and aminocaproic acid. There have not been adequate studies of the use of FEIBA and rFVIIa (NovoSeven®), or emicizumab together, or one after the other. Use of drugs that may prevent clot breakdown within approximately 6 to 12 hours after the administration of FEIBA is not recommended.

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

Please see FEIBA full Prescribing Information, including BOXED WARNING on blood clots, and discuss with your doctor.