Adrian 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.
Adrian 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, Adrian made frequent visits to the emergency room with bleeding, painful bruises, and joint swelling. After moving to the United States in his mid-20s, Adrian 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 Adrian was finally diagnosed with factor X deficiency.
After more than 25 years of bruising and pain, Adrian 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. Adrian said, “My wife needed to run all the errands and attend all social activities without me.”
Tired of missing work and family activities, Adrian 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, Adrian switched to COAGADEX in November 2016.
Carly and Ariel found support and help in the factor X community and hope their story will encourage others to also get involved.
Carly is a mother raising two children with hereditary factor X deficiency (Gabe and Ariel). Both carriers for factor X deficiency, Carly and her husband Brian quickly learned the importance of being advocates for their children’s care. They have also become advocates for others. Carly shares her story about Ariel in hopes that other families can stay informed about factor X deficiency and get connected with the factor X community.
When Carly gave birth to Ariel two years after her son Gabe was diagnosed with hereditary factor X deficiency, Carly and Brian were proactive. Ariel was immediately tested for and diagnosed with hereditary factor X deficiency. While it was “immensely overwhelming” to face the same diagnosis in a second child, Carly felt empowered to know that Ariel could benefit from early diagnosis and treatment. Ariel was treated first with prothrombin complex concentrate (PCC), with treatments continuing for many years.
Over time, Carly and Brian have stayed informed and connected through social media, their local National Hemophilia Foundation (NHF) chapter, attendance at national conferences, and keeping in close contact with their children’s doctor. In fact, it was during a doctor visit in 2015 that Carly first learned about a development in hereditary factor X deficiency treatment.
With the approval of COAGADEX in 2015, Ariel felt relief and an immediate sense of pride. “It helped her self-esteem and confidence to know that she now had a treatment specifically approved and made for her disease,” Carly said.
Ariel used to wonder if she could manage treatments on her own. Now she feels empowered to self-infuse COAGADEX, and she is attending college. Carly is proud that Ariel is learning to handle her treatment independently, and she’s inspired by how Ariel manages factor X deficiency with “poise, beauty, and grace.”
Maritza 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.
Maritza 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, Maritza 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), Maritza was given birth control pills to help control her heavy menstrual bleeding.
After moving to the United States with her husband, Maritza 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, Maritza 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.
Maritza’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.
Pam and Reece hope their story helps others understand why it’s important to get early diagnosis of factor X deficiency and become an advocate for treatment.
Pam and her husband are parents of two children, one of whom was diagnosed with factor X deficiency soon after birth. After her initial shock, Pam became an advocate for her son, Reece, and has continued her strong advocacy for over 20 years. She hopes sharing her story about Reece moves other parents to advocate for early diagnosis and treatment for factor X deficiency.
Reece’s early days were a challenge, made more so by a severe brain bleed at 5 weeks of age. After being treated with fresh frozen plasma (FFP), Reece continued treatment twice weekly through a port placed in his chest. Over time, Pam and Reece struggled with maintaining the port and preventing infection.
Pam saw the value of being a strong partner with Reece’s health care team members. The doctors and nurses were family to her. Sharing their excitement when they told her COAGADEX was approved for hereditary factor X deficiency, she worked hard to ensure insurance coverage.
Pam proudly remembers the day in 2016 when Reece began his first COAGADEX infusion. She beams with confidence and gratitude that her son no longer needs a port and can self-infuse it in his arm over a shorter period of time.
Pam is grateful for the man her son has grown into, aided by her advocacy skills and COAGADEX. “I learned you might be only one voice, but you’ve got to stand up for yourself to be heard,” she said. Now she wants to share her story about Reece to inspire others on their factor X journeys.
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 and moderate hereditary factor X deficiency
Limitation of Use
Perioperative management of bleeding in major surgery in patients with severe hereditary factor X deficiency has not been studied.
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.