By Carol Dematteis, Community Relations and Education Manager for Sanofi Genzyme
Two things have shaped my life and given me strength - the hemophilia gene and post-traumatic stress disorder (PTSD). But as I learned from my dad in how he handled all the obstacles caused by his bleeding disorder, I can never give up. I am inspired by his drive to live fully and I am passionate about making a positive difference in the world. This is why I am a Community Relations and Education Manager for Sanofi Genzyme.
My dad, Charles Carman, was born in 1938 with hemophilia. He was hospitalized through his Junior and Senior years of high school because of an uncontrolled bleed and was told by doctors that he might never walk again. At the time, the only treatment option was blood transfusions and the life expectancy was less than 20 years old.1
He beat the odds. He walked at his high school graduation. He learned to drive a stick-shift car despite the joint damage caused by bleeds in his ankles and knees. He even attended college several hours away and moved to California for graduate school. After graduate school, he landed his dream job as a research chemist in Houston. Then, obstacles appeared again. On his first day of work, he was denied employment after disclosing he was living with hemophilia.
My dad was a mentor to many. As they came and went through our home, I remember on occasion when I overheard someone say he was “the oldest living hemophiliac.” My dad was in his late 20s at the time and I was very confused because he didn’t look old. He was happy and, in my eyes, full of life. I also assumed all dads walked with a limp and were not able to fully extend their elbow or wrist. All I could see was my dad’s drive and passion for life.
* Photo: My dad and I on my first birthday.
But drive and passion are not treatments for hemophilia. When I was eight years old, my dad was hospitalized for a full year due to a life and limb-threatening bleed. He barely survived. I wasn’t aware until adulthood, but the trauma from his hospitalization and near-death experience is when I developed PTSD.
Serious crisis with the blood supply
In the 1980s, there was a serious crisis in the hemophilia community. Nearly half of the community was dying from AIDS. As president of National Hemophilia Foundation (NHF) and later World Federation of Hemophilia (WFH), my dad made it his mission to advocate for the safety of the blood supply. He even served on the national AIDS Task Force.
The problem was blood banks, blood product manufacturers, regulatory organizations and advocates couldn’t agree on the problem or if action needed to be taken. Tragically, some mistakenly believed the risk of AIDS from transfusions was low ("one in a million transfusions") and decision makers at the time believed “control strategies would be ineffective.”2 NHF did believe in order to ensure safety of the blood supply, donors should be screened and high-risk donors should be excluded from the blood and plasma supply. However, many lives were lost before necessary action was taken.
My freshman year of college, a journalist from the Akron Beacon Journal came to our home to talk to
my dad about the hemophilia community.
It wasn’t until 1989 that the FDA issued guidance on the collection of blood or blood products from donors with positive tests for infectious disease markers.3 In 1995, less than six years after the guidance and only seven weeks before my first daughter was born, my dad passed away from AIDS.
The fight continues
Becoming a parent only strengthened my tie to the hemophilia community. After my second daughter was born, I developed a life-threatening bleed and I was told it would be impossible to carry another child. To our surprise, a few years later our son Dylan was born and just like my dad, Dylan had hemophilia.
Day-by-day, I coped. When Dylan was 1 year old, his Hemophilia Treatment Center asked my husband and I to participate in the national Parents Empowering Parents program. This was my opportunity to find connections and better understand parenting a child with hemophilia. Soon after, I became a Parent Mentor to support families newly diagnosed with hemophilia.
* Photo: My son Dylan and I when he was 6 years old.
Then I decided I needed to make advocating for people with hemophilia my career. More than 15 years ago, I joined the staff at my local Hemophilia Treatment Center as a Patient Advocate. This was without a doubt the best career decision as it brought me to my role as a Community Relations and Education Manager for Sanofi Genzyme.
Hemophilia will always be personal for me. My career allows me to emulate my dad’s drive and passion for the hemophilia community. But even better, I get to help families like mine as they navigate through life with hemophilia.