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Fernando was born in El Paso, Texas, and diagnosed with severe hemophilia A at the age of nine months. “My maternal grandfather also had hemophilia. Since I am in my mid–40's, I guess you could call me an ‘older generation’ hemophilia patient. At that time, there was a lot of concern about contaminated blood, so patients only infused as a last resort.” Because of this, Fernando did not receive prophylactic treatment early on and was treated only for on–demand bleeding. When he had a bleed, which was very frequent, he would go to his hematologist or an ER. “I spent so much time at the hospital that I even had my own room there. One time, I spent over five months in the hospital dealing with an inhibitor.” Later, Fernando was referred to a Hemophilia Treatment Center in Albuquerque. It was a three–hour drive each way for treatment. “It caused tremendous stress on my family and a lot of distance and emotional isolation for me. I had to face so many fears and uncertainties at a very young age. A friend of the family, Gilberto J. Garcia LPC, NCC, was a practicing private therapist. Through books, he introduced me to famous psychologists such as Dr. Albert Ellis, Dr. Maxwell Maltz, and Dr. Aaron T. Beck. That was the catalyst that sparked my interest in psychological counseling and mental health. Today I am a college counselor for students with social and learning challenges and a Patient Educator with Octapharma. I give talks on mental health for patients and caregivers in the bleeding disorders community.”
Until 2003 Fernando was on plasma–derived therapy, later switching to recombinant FVIII replacement. “When I started, I did not have much information about my options. I took what was prescribed, but I had some significant problems – I still had break–through bleeds, and sometimes the dosage on labels was incorrect. On several occasions the product had to be returned and replaced. In thinking about changing the factor VIII I used, I was scared – concerned about adverse side effects – thrombosis in the brain or lungs, inhibitor development – even death. During that time, I had bleeds that would not stop. One time I had a head bleed that went on for twelve days. I was desperate. Because I did not have health insurance then, I did not want to go to a hospital. Fortunately, I was able to get a free trial of NUWIQ®. It stopped the break–through bleed.” In 2017 Fernando spoke to his HTC and requested to switch to NUWIQ officially. He has never looked back.
Fernando witnessed that people with chronic conditions, and their caregivers, often experience sadness, depression, and lots of negative stress. He noticed the impact on overall mental and physical health and believes that it is critical to address these issues head–on. In his twenties, Fernando's search for meaning led him to study behavioral science and pursue a bachelor's degree in psychology, followed by a master's degree in mental health counseling. “Why? I am a lifelong recipient of endless kindness, empathy, and compassion from my second family: nurses, hematologists, pharmacists, mental health mentors, and other medical professionals. I wanted to ‘pay it forward’ and dedicate my life to listening with genuine care, accepting all, and empathizing with the spiritual journey of others.” Fernando teaches how to counter the emotional burdens of chronic disorders using relaxation techniques, strategizing how to disclose information about the illness, finding ways to accept limitations, and exploring ways to enjoy life. “Me? I love spending time reading, at the ocean and the beach, traveling and meeting new people, and listening to music — The Beatles, Prince, Madonna, Bryan Adams, Jimi Hendrix, Luis Miguel, and Dua Lipa. I am a fan of author Amy Morin. These are some of my tools to maintain good mental health.”
Fernando has found that people who are very involved in the bleeding disorders community fare better than others because they connect with people who truly understand the experience. He believes that alienating oneself and withdrawing may make things worse. “Being part of your local hemophilia organization, participating at hemophilia events, attending camp, and sharing our personal stories with others may help alleviate feelings or beliefs that we are alone. The hemophilia community's collective voice is our assurance that we are united in spirit. ‘United as one, we are a force of nature.’ This sense of belonging is so different today from when I was growing up in the '80s. I'm glad.” It is Fernando's conviction that compassion, connection, and caring make all the difference in the world. “My favorite quote is from Dr. Viktor Frankl: ‘The truth: love is the ultimate and the highest goal to which humankind can aspire. I grasped the meaning of the greatest secret that human poetry and human thought and belief have to impart: The salvation of humankind is through love and in love.’” The Beatles said it too, albeit more succinctly: “All you need is love.”
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Your local Patient Experience Manager will contact you within two to three business days to facilitate your meeting request with Patient Educator .
This material represents individual patient and/or caregiver experience living with a bleeding disorder.
This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Please consult with your local Hemophilia Treatment Center physician or other health care provider if you have any questions related to management of bleeding disorders.
Este material representa la experiencia individual de un paciente o cuidador que vive con un trastorno hemorrágico
Este contenido no tiene como objetivo reemplazar el consejo, diagnóstico o tratamiento médico profesional. Consulte con el médico de su Centro de Tratamiento para la Hemofilia local u otro proveedor de atención médica si tiene preguntas relacionadas con el manejo de los trastornos hemorrágicos.
Indications and Important Safety Information for NUWIQ® [Antihemophilic Factor (Recombinant)].
Please see NUWIQ full Prescribing Information. Instructions For Use
Indications and Usage
NUWIQ® is a recombinant antihemophilic factor [coagulation factor VIII (Factor VIII)] indicated in adults and children with Hemophilia A for on-demand treatment and control of bleeding episodes, perioperative management of bleeding, and routine prophylaxis to reduce the frequency of bleeding episodes. NUWIQ® is not indicated for the treatment of von Willebrand Disease.
Contraindications
NUWIQ is contraindicated in patients who have manifested life-threatening hypersensitivity reactions, including anaphylaxis, to the product or its components.
Warnings and Precautions
Hypersensitivity reactions, including anaphylaxis, are possible with NUWIQ. Early signs of hypersensitivity reactions that can progress to anaphylaxis may include angioedema, chest tightness, dyspnea, wheezing, urticaria, or pruritus. Immediately discontinue administration and initiate appropriate treatment if hypersensitivity reactions occur.
The formation of neutralizing antibodies (inhibitors) to Factor VIII can occur following the administration of NUWIQ. Monitor all patients for the development of Factor VIII inhibitors by appropriate clinical observations and laboratory tests. If the plasma Factor VIII level fails to increase as expected, or if bleeding is not controlled after NUWIQ administration, suspect the presence of an inhibitor (neutralizing antibody).
Adverse Reactions
The most frequently occurring adverse reactions (>5%) in clinical trials were upper respiratory tract infection, headache, fever, cough, lower respiratory tract infection, rhinitis, chills, abdominal pain, arthralgia, anemia, and pharyngitis.
Please see NUWIQ full Prescribing Information. Instructions For Use
Indicaciones e Información de seguridad importante de NUWIQ® [factor antihemofílico (recombinante)].
Consulte la Información de prescripción completa de NUWIQ. Instrucciones de uso
Indicaciones y uso
NUWIQ® es un factor antihemofílico recombinante [factor VIII para la coagulación (factor VIII)] indicado en adultos y niños con hemofilia A para el tratamiento y el control a demanda de los episodios hemorrágicos, el control perioperativo de las hemorragias y profilaxis de rutina con el fin de reducir la frecuencia de los episodios hemorrágicos. NUWIQ® no está indicado para el tratamiento de la enfermedad de von Willebrand.
Contraindicaciones
NUWIQ está contraindicado en pacientes que hayan manifestado reacciones de hipersensibilidad al producto o sus componentes, como anafilaxia, que ponen en riesgo la vida.
Advertencias y precauciones
Es posible que NUWIQ cause reacciones de hipersensibilidad, como anafilaxia. Los primeros signos de reacciones de hipersensibilidad que pueden progresar y derivar en anafilaxia incluyen angioedema, opresión en el pecho, disnea, sibilancias, urticaria o prurito. Si se producen reacciones de hipersensibilidad, suspenda la administración de inmediato e inicie el tratamiento adecuado.
Se pueden formar anticuerpos neutralizantes (inhibidores) del factor VIII luego de administrar NUWIQ. Controle a todos los pacientes para detectar el desarrollo de inhibidores del factor VIII mediante observaciones clínicas y análisis de laboratorio adecuados. Si el nivel del factor VIII en plasma no aumenta según lo esperado o si la hemorragia no se controla luego de la administración de NUWIQ, se debe sospechar la presencia de un inhibidor (anticuerpo neutralizante).
Reacciones adversas
Las reacciones adversas más frecuentes (>5%) que tuvieron lugar en ensayos clínicos fueron infección del tracto respiratorio superior, dolor de cabeza, fiebre, tos, infección del tracto respiratorio inferior, rinitis, escalofríos, dolor abdominal, artralgia, anemia, y faringitis.
Consulte la Información de prescripción completa de NUWIQ. Instrucciones de uso
Indications and Important Safety Information for wilate® [von Willebrand Factor/Coagulation Factor VIII Complex (Human)].
Please see wilate full Prescribing Information.
Indications
wilate® is a von Willebrand Factor/Coagulation Factor VIII Complex (Human) indicated in children and adults with von Willebrand disease for on-demand treatment and control of bleeding episodes and for perioperative management of bleeding. wilate is also indicated in adolescents and adults with hemophilia A for routine prophylaxis to reduce the frequency of bleeding episodes; and for on-demand treatment and control of bleeding episodes.
Contraindications
wilate® is contraindicated in patients with known hypersensitivity reactions, including anaphylactic or severe systemic reactions, to human plasma-derived products, any ingredient in the formulation, or components of the container.
Warnings and Precautions
Hypersensitivity Reactions
Hypersensitivity reactions may occur with wilate®. Signs and symptoms include angioedema, burning and stinging at the infusion site, chills, flushing, generalized urticaria, headache, hives, hypotension, lethargy, nausea, restlessness, tachycardia, tightness of the chest, tingling, vomiting, and wheezing that may progress to severe anaphylaxis (including shock) with or without fever. Closely monitor patients receiving wilate® and observe for any symptoms throughout the infusion period.
Because inhibitor antibodies may occur concomitantly with anaphylactic reactions, evaluate patients experiencing an anaphylactic reaction for the presence of inhibitors
Thromboembolic Events
In VWD, continued treatment using a FVIII-containing VWF product may cause an excessive rise in FVIII activity, which may increase the risk of thromboembolic events. Monitor plasma levels of VWF:RCo and FVIII activities in patients receiving wilate to avoid sustained excessive VWF and FVIII activity levels.
Neutralizing Antibodies
VWD
Hemophilia A
Transmissible Infectious Agents
wilate® is made from human plasma. Because this product is made from human blood, it may carry a risk of transmitting infectious agents, e.g., viruses, and theoretically, the variant Creutzfeldt-Jakob disease (vCJD) agent. There is also the possibility that unknown infectious agents may be present in the product. The risk that wilate® will transmit viruses has been reduced by screening plasma donors for prior exposure to certain viruses, by testing for the presence of certain current virus infections, and by inactivating and removing certain viruses during manufacture. Despite these measures, it may still potentially transmit disease.
Record the batch number of the product every time wilate® is administered to a patient, and consider appropriate vaccination (against hepatitis A and B virus) of patients in regular/repeated receipt of wilate®. ALL infections thought by a physician possibly to have been transmitted by this product should be reported by the physician or other healthcare provider to Octapharma USA, Inc., at 1-866-766-4860.
Monitoring and Laboratory Tests
Adverse Reactions
The most common adverse reactions to treatment with wilate (≥ 1%) in patients with VWD were hypersensitivity reactions, urticaria, and dizziness. The most common adverse reactions to treatment with wilate (≥ 1%) in previously treated patients with hemophilia A was pyrexia (fever).
Please see wilate full Prescribing Information.
Indicaciones e Información de seguridad importante de wilate® [complejo de factor de von Willebrand/factor VIII de la coagulación (humanos)].
Consulte la Información de prescripción completa de wilate.
Indicaciones
wilate® es un complejo de factor de von Willebrand/factor VIII de la coagulación (humanos) indicado en niños y adultos con enfermedad de von Willebrand para el tratamiento y el control a demanda de los episodios hemorrágicos y para el control perioperativo de las hemorragias. wilate también se indica en adolescentes y adultos con hemofilia A para profilaxis de rutina con el fin de reducir la frecuencia de los episodios hemorrágicos; y para el tratamiento y el control a demanda de los episodios hemorrágicos.
Contraindicaciones
wilate® está contraindicado en pacientes con reacciones de hipersensibilidad conocidas, incluidas las reacciones anafilácticas o las reacciones sistémicas graves a productos derivados de plasma humano, cualquier ingrediente de la formulación o los componentes del envase.
Advertencias y precauciones
Reacciones de hipersensibilidad
Pueden producirse reacciones de hipersensibilidad con el uso de wilate®. Los signos y síntomas incluyen angioedema, ardor y picazón en el lugar de la infusión, escalofríos, sofoco, urticaria generalizada, dolor de cabeza, ronchas, hipotensión, letargo, náuseas, inquietud, taquicardia, opresión en el pecho, hormigueo, vómitos y sibilancias que pueden progresar y derivar en anafilaxia grave (incluido shock) con o sin fiebre. Controle de cerca a los pacientes que reciban wilate® y preste atención a cualquier síntoma durante el período de infusión.
Debido a que los anticuerpos inhibidores pueden desarrollarse de forma concomitante con las reacciones anafilácticas, evalúe a los pacientes que experimenten una reacción anafiláctica para detectar la presencia de inhibidores.
Anticuerpos neutralizantes
Enfermedad de von Willebrand
Hemofilia A
Agentes infecciosos transmisibles
wilate® está hecho a partir de plasma humano. Debido a que este producto está hecho de sangre humana, puede implicar un riesgo de transmisión de agentes infecciosos, como virus y, en teoría, el agente de la variante de la enfermedad de Creutzfeldt-Jakob (vCJD). También existe la posibilidad de que haya agentes infecciosos desconocidos en el producto. El riesgo de que wilate® transmita virus se ha reducido mediante la realización de pruebas de detección a los donantes de plasma para detectar la exposición previa a determinados virus, mediante análisis para detectar la presencia de ciertas infecciones virales actuales y mediante la desactivación y eliminación de determinados virus durante la fabricación. A pesar de estas medidas, aún existe la posibilidad de que transmita enfermedades.
Registre el número de lote del producto cada vez que wilate® se administre a un paciente y considere aplicar las vacunas adecuadas (contra los virus de la hepatitis A y B) a los pacientes que reciban wilate® de manera regular o repetida. TODAS las infecciones que un médico considere que se pueden haber transmitido a través de este producto deben ser informadas por el médico u otro proveedor de atención médica a Octapharma USA, Inc., al 1-866-766-4860.
Control y análisis de laboratorio
Reacciones adversas
Las reacciones adversas más comunes al tratamiento con wilate (≥ 1 %) en pacientes con enfermedad de von Willebrand fueron reacciones de hipersensibilidad, urticaria y mareos. La reacción adversa más común al tratamiento con wilate (≥ 1 %) en pacientes con hemofilia A previamente tratados fue pirexia (fiebre).
Consulte la Información de prescripción completa de wilate.
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