BDFF Spotlight: Joe Riggs
Joe Riggs
Resides: Odessa, Florida
Hometown: Jacksonville, Florida
Involvement with BDFF: 10-plus years
Like many Baby Boomers diagnosed with hemophilia as an infant, the road to survival was not an easy one for Joe Riggs. Prior to present-day long-lasting factor VIII and a true understanding of the disease, people like Joe had to struggle through much of their young lives in order to stay alive.
But stay alive he has, living life to its fullest and giving back to the community. He currently serves on the Board of Directors for the Bleeding Disorders Foundation of Florida, the only board member with hemophilia.
“I enjoy presenting real-life feedback to the Board,” says Joe, who attends events, walks and assists with fundraising. “I give them a perspective of what it was like in the old days and what it is like today. I’m a real-life rep.”
The Senior Vice President, Florida Retail Division Executive for Valley National Bank in Tampa, Joe was diagnosed when he was six months old in the early 1960s on the Newfoundland Army base where he was born. He was the first known member of his family to have hemophilia, attributed by doctors to a dormant gene.
Joe says there was little known about hemophilia 55 years ago, so he is grateful that his late mother was an RN to help him manage and cope as a child.
“Early on it was just blood transfusions and plasma,” he recalls. “I was one of the first to receive factor VIII, but infusing was a big, long arduous process.”
Joe was also the victim of improper treatment at a young age due to a lack of knowledge in the medical community surrounding hemophilia. For joint bleeds, the remedy was an ice pack. The blood would then sit in the joint, leading to permanent damage, and causing Joe to endure seven orthopedic surgeries over the years.
“Those of us who are still around walk with stiff legs and limps,” he says.
Add to that a few bouts with contaminated factor, infusing with old product every other day, and the stigma that comes with having a blood disease, it is understandable why it took Joe s long to come to terms with his condition.
“I was not that open with everybody about having hemophilia,” he says. “I never talked about it. It was a private thing that I dealt with.”
Then about ten years ago, Joe decided to pick up the phone and call BDFF Executive Director Fran Haynes so he could begin to heal and help others.
“I was established in my career and had lost the fear of what others thought, so I decided that I wanted to give back. Now I am who I am. I don’t dwell about the monkeys on my back. It’s not ‘why me?’ anymore.”
Joe attributes his heightened confidence level to wonderful friends and his “incredible wife” of 30 years, Kelli, who introduced him to the joys of travel. The two have journeyed all over the world, something he used to think was not in the cards. Switching to long-lasting factor VIII when it came to market not only made travel easier, but it also gave Joe a new outlook he never could have imagined.
“Now that I only infuse every five days, I tell people that I get to see what it’s like to live a life without hemophilia,” he says. “I get a glimpse into normalcy.”
While there are a multitude of reasons for Joe’s perseverance over the years, he likes to advise other patients on the importance of staying positive and not to wait on living their lives.
“You don’t know what the future holds,” he says. “Do what you can while you can. Having hemophilia has taught me to live. It has caused me not to put things off.”