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.”
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.