Real Patients and Caregivers Share Their Stories
Real patient stories can generate clinical insights in symptomatology, diagnosis, and treatment—this can be especially useful in rare disorders like factor X deficiency.
What clinical insights do you see in these patient and caregiver stories?
with factor X deficiency
diagnosed at age 5
prophylaxis since 2020
Olivia’s story – Taking COAGADEX since 20161
Diagnosed at birth with factor X deficiency, Olivia is immersed in her pharmacology and neuroscience graduate studies, cultivating her interest in drug discovery and development. Over time, she has met the challenges of managing factor X deficiency and its multiple symptoms, including those specific to women’s health.
Name changed for privacy.
- Growing up with hereditary factor X deficiency
- Symptoms: nose bleeds, bruises, and joint pain
- Symptoms: heavy menstrual bleeding
- Making sure her symptoms were acknowledged
- Disease severity
- Importance of individualized treatment
- Prophylactic treatment with COAGADEX
- Taking COAGADEX and learning self-infusion
"I was also having a lot of problems with my periods and because my periods weren’t controlled, that’s what kind of spiraled everything else out of control with the other bleeding situations—with the joint bleeding, and then the subsequent gum bleeding."
Carly’s story — Mother of two children with factor X deficiency1
As the devoted mother of two children with factor X deficiency, Carly carries a unique perspective to share with patients and providers. She draws on her wealth of experience to serve as an advocate for those diagnosed with factor X deficiency, and for their caregivers and families.
- Struggles with the disorder: multiple bleeds, and a brain bleed
- Seeking information: after her son’s diagnosis
- Her daughter’s birth: a second diagnosis
- Symptoms while growing up
- Early treatment attempts
- Living life as normal as possible
- Advocating to start COAGADEX
- Her children’s lives now: as young adults
- A mother’s plea
“My daughter started having prophylactic care the day that they found out that she had factor X deficiency. My daughter did not have any symptoms whatsoever of any kind of bleeding episodes… But we knew how important it was to not let her have any brain bleeds, or neurological bleeds, or any of the other symptoms that she could have possibly had.”
Leah’s story – Mother of daughter diagnosed at age 51
As the mother of a young daughter recently diagnosed with factor X deficiency, Leah can speak firsthand to the challenges of finding a correct diagnosis for a rare bleeding disorder. She persisted for years before finally finding the cause of her daughter’s joint pain and swelling.
“When we would go in to try and figure out what was going on with her, we ended up with at least two casts. So we had one on the arm, one on the leg, several splints for her ankles, wraps…We probably had around 20 different devices put on her to try to make this better…We definitely weren’t thinking joint bleeds. When we would go into the doctor for what were joint bleeds, they would almost assume that it was just a severe sprained ankle, and we would do x‐rays—almost every single time we would do x‐rays. So, we would go in, do the x‐rays; they wouldn’t find anything on the x-rays, so…the doctor would say, “ice, rest, ibuprofen.”
John’s story – Receiving COAGADEX prophylaxis since 20201
Despite an early diagnosis at 1 year of age, John’s childhood, teen, and adult years were dramatically affected by damage caused by recurring bleeds. John was grateful to finally discover COAGADEX prophylaxis in 2020. At age 51, he is the oldest known individual in the US with severe hereditary factor X deficiency on COAGADEX prophylaxis. He feels providers can benefit from hearing about his experiences and hopes their insights help improve care for other patients.
- Growing up with hereditary factor X deficiency
- Symptoms: Bleeds, bruises, and a diagnosis
- Symptoms: Muscle bleeds, and injuries
- Symptoms: Joint swelling and pain
- Symptoms: Hip pain with total hip replacement
- Hospitalization for a cardiac bleed
- Earlier treatments: Fresh frozen plasma
- Starting COAGADEX
- Daily life with COAGADEX
- Learning to self-infuse COAGADEX
- Finding community and connection
- Tips for others
- John’s message to physicians
- Confidence for the future
“Using factor X prophylactically helps me on a daily basis. Everything that I used to do was associated with some pain, whether it was strained muscles or minor pulls or just overusing a muscle group. There have been several times when I’ve been out in the yard doing something, pushing a wheelbarrow for example… and thinking to myself, ‘Wow, this could be really bad.’ And then reminding myself that, ‘Wait a second, I'm on COAGADEX.’”
Read more real patient stories…
It was only after being hospitalized for a brain bleed from a construction accident that Fernando was diagnosed with factor X deficiency.
Fernando is happy to share his story with the factor X community. He encourages everyone to be their own advocate, seek help when needed, and find the treatment that is right for them.
Fernando spoke with us about how he arrived at switching his treatment to COAGADEX—the first and only treatment specifically for hereditary factor X deficiency.
Growing up in Mexico, Fernando made frequent visits to the emergency room with bleeding, painful bruises, and joint swelling. After moving to the United States in his mid-20s, Fernando worked in construction. While he tried to be careful, he continued to have serious bleeds and made many trips to the emergency room. It was only after being hospitalized for a brain bleed from a construction accident that Fernando was finally diagnosed with factor X deficiency.
After more than 25 years of bruising and pain, Fernando was treated with fresh frozen plasma (FFP) for the first time. Returning to his work in construction, he continued to have bruising, swelling, and pain, requiring frequent trips to the emergency room. While FFP did help stop his bleeding, he struggled with feeling tired and weak. Fernando said, “My wife needed to run all the errands and attend all social activities without me.”
Tired of missing work and family activities, Fernando became his own advocate. His sister, who also had factor X deficiency, told him about a product called COAGADEX that she had recently started taking. Working with a patient advocate, his doctor, and his insurance provider, Fernando switched to COAGADEX in November 2016.
Isabelle was diagnosed with factor X deficiency as a young adult but didn’t receive treatment until she had a miscarriage with her first child.
Isabelle hopes that sharing her factor X story will help others to stay determined in finding answers to their questions. She encourages them to connect with the National Hemophilia Foundation (NHF) to learn more.
Isabelle was diagnosed with factor X deficiency as a young adult but didn’t receive treatment until she had a miscarriage with her first child. Now a mother of 3 children, she hopes her story of determination, seeking answers, and getting involved will inspire others with factor X deficiency to live their best life.
Although she was anemic as a child, Isabelle did not know she had factor X deficiency until she was hospitalized at age 21 for severe bleeding after dental surgery. Since she lived in the Dominican Republic and could not obtain fresh frozen plasma (FFP), Isabelle was given birth control pills to help control her heavy menstrual bleeding.
After moving to the United States with her husband, Isabelle became pregnant with her first child but suffered a miscarriage. Testing confirmed she had factor X deficiency. Sadly, she was told she could not have any more children. Seeking answers, Isabelle found a high-risk pregnancy specialist who treated her with FFP. With specialty care she was able to have three healthy children. But over time, she developed health issues, including a severe allergic reaction to FFP. No longer able to receive treatment for bleeding, she became fearful of injury and began limiting her activity.
Isabelle’s life changed when she found out about COAGADEX from her doctor. “For 23 years I had nothing. Now I do have something—and it’s made just for me,” she said. With a new confidence gained from the availability of COAGADEX, she began to get more involved in the bleeding disorders community and even attended the National Hemophilia Foundation’s (NHF) annual meeting in Chicago in 2017. There she gained new friendships and information to discuss with her doctor.
She is thankful she joined NHF to learn more and encourages other factor X families to do the same.
Indications and Usage for COAGADEX
COAGADEX, a plasma-derived blood coagulation factor X concentrate, is indicated in adults and children with hereditary factor X deficiency for:
- Routine prophylaxis to reduce the frequency of bleeding episodes
- On-demand treatment and control of bleeding episodes
- Perioperative management of bleeding in patients with mild, moderate and severe hereditary factor X deficiency
Contraindication for COAGADEX
COAGADEX is contraindicated in patients who have had life-threatening hypersensitivity reactions to COAGADEX.
Important Safety Information for COAGADEX
Allergic type hypersensitivity reactions, including anaphylaxis, are possible with COAGADEX. If symptoms occur, patients should discontinue use of the product immediately, contact their physician, and administer appropriate treatment.
The formation of neutralizing antibodies (inhibitors) to factor X is a possible complication in the management of individuals with factor X deficiency. Carefully monitor patients taking COAGADEX for the development of inhibitors by appropriate clinical observations and laboratory tests.
COAGADEX is made from human plasma and may contain infectious agents, e.g. viruses, the variant Creutzfeldt-Jakob disease (vCJD) agent and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent. No cases of transmission of viral diseases, vCJD or CJD, have been associated with the use of COAGADEX.
In clinical studies, the most common adverse reactions (frequency ≥5% of subjects) with COAGADEX were infusion site erythema, infusion site pain, fatigue and back pain.