Family man, native of Peru, now lives in FL
Find inspirational stories from hemophilia B
patients in the B the Inspiration series.
When I speak to people, I say that I don’t see hemophilia as my enemy but as a friend.”
Tell us a little about yourself.
Hi, my name is Jose. I was born and raised in Lima, Peru. I came to the United States as an adult and live in Florida. I am now a citizen of this beautiful country which has opened its arms to accept me and my family with much love. My wife, Juanita, and I have three daughters: Andrea, Ursula, and Gloria. Our older daughters, Ursula and Gloria, are married and live with their husbands.
Does your family have a history of hemophilia B?
I was diagnosed with hemophilia B at birth. So many men in my family, including cousins and uncles, have had hemophilia B—15 men were born with hemophilia B and only 3 of us are alive today. When I was the second grandson born, the doctor knew to test for it.
We were 5 brothers, 4 with hemophilia. Two of them have passed away from complications from hemophilia, and my surviving 2 brothers live in Peru, including my youngest brother, Raphael. Raphael has hemophilia too and is now an attorney and visits me in America 2 or 3 times a year.
What was growing up with hemophilia B like for you?
From the time I was a kid, I knew I had hemophilia, but I did not really know what hemophilia was. When I had pain from a bleed and felt sick, I didn’t understand what was happening.
In a typical year, I missed 3 or 4 months of school because of bleeds. I worked hard to be a good student and mostly was able to keep up with the work, except for a 2-year period when the bleeds were so bad I was often bedridden. At times, I was unable to walk or even stand.
When I was in school, I was very lucky and had very good friends who took care of me. I told them what I had and my friends welcomed me and never wanted to make me feel different. I’m still friends with them today.
Tell us about your treatment journey.
For really severe bleeds, my father had to take me to the hospital for a transfusion because there was no factor back then. My father had to donate his blood for every one of my transfusions. Unfortunately, my third brother had bleeds as bad as I did, but he had a different blood type than my father.
My brothers and I started to learn to manage our hemophilia. When I was 22 years old, my doctor taught me how to self-infuse, and I began learning to take charge of managing my hemophilia.
Before that, I was irresponsible because I wanted to live more like my friends. I didn’t view taking care of my hemophilia as living, especially socially. I decided that I wanted to live my life instead of taking care of my hemophilia. But in my early 20s, I began to be more responsible and take care of myself.
I am now on prophylactic treatment with RIXUBUS. It seems to work for me; I infuse twice a week, usually Tuesday and Friday. My home care nurse does my infusion when he is here. Since starting RIXUBIS prophylactic treatment, I have had less bleeds than before. When I am on prophylactic treatment, I’m not constantly worrying about frequent bleeds. I also like that RIXUBIS is recombinant.
How has having hemophilia B influenced where you are today?
Having hemophilia has led me on an interesting and sometimes challenging journey. I had my own business in Peru in wholesale, distributing groceries to different stores. I came to the United States in 1998 in search of other treatment options and better opportunities for my family.
Because of damage to my hips, knees, and ankles from bleeds, I could only walk with crutches for 27 years. Fortunately, I was able to have a hip replacement and now can walk with only the aid of a cane. I am hoping to have knee replacements and believe that surgery will allow me to walk without even a cane.
During the 2-year time period when I was often bedridden, my parents brought me books. I read during those 2 years, and today I feel that I know about the history of the world, that I am well-versed, and that I was always able to help my daughters with their homework. I accepted my hemophilia and found what I can do with my life.
Now I try to eat well, stay as active as I can, and take care of myself. I don’t drink coffee, and I drink alcohol only on special occasions. I like cooking. Interestingly, I learned how to cook Peruvian food when I came to the United States; I didn’t cook in Peru.
I also keep myself busy with gardening and fixing computers. I drive my wife to and from work, and we enjoy watching television and sometimes cooking together.
I meet with the team at my Hemophilia Treatment Center every 3 months for a checkup.
Are you active in the hemophilia community?
When I lived in Peru, my family and I were very active with the hemophilia community. When I was 18 years old, my uncles and I worked together to establish a chapter, and through our advocate work, the Peruvian government started to pay attention to hemophilia.
We are members of the Florida Hemophilia Association. I recently was appointed to go to Washington to meet with Florida legislators to advocate and to educate them on behalf of the hemophilia community of Florida.
Every time I have the opportunity to talk with people about hemophilia, I try to make myself an example for others. Although I’ve lived with hemophilia all my life, I was able to go to school and university, get married, be productive, and be respected. I was able to meet my goals and fulfill many dreams.
When I speak to people, I say that I don’t see hemophilia as my enemy but as a friend. Sometimes people say that is crazy. But having hemophilia has brought me into contact with many wonderful people and has allowed me to do incredible things helping others.
Through the hemophilia community, I’ve gotten these opportunities that have been so meaningful to me, and I value all of this. I believe hemophilia has made me a better person. My daughters have seen the positive results of my current treatment. I believe that the future could be bright for future generations.
My story is no better or worse than anyone with hemophilia in my generation. It is just my own. Everyone with hemophilia has a different and worthy story of their own life, and I wanted to share my story with you: a story of hope and love. Love, that my mom and dad gave to their children, and hope for a future of a better life. I hope you enjoyed hearing my story and that I inspired you to learn more about hemophilia and to get involved with the hemophilia community.
Not all activities are appropriate for all people. Consult with your healthcare provider to determine which activities are appropriate for you.