When you hear the word hemophilia it probably conjures up horrible images of people bleeding out with the slightest of cuts. Hemophilia is an inherited disorder that stops the body's ability to control bleeding. While living with hemophilia is still scary, treatment has come a long way.
For one South Bend family with three generations of sufferers, living with hemophilia has become a family affair.
A small accident that most kids would have survived with some tears and a kiss from mom and dad sent Courtney Tulledge's son, Chase to the hospital.
“He was in his crib and he woke up from his nap and he fell on his bottle...he was just spitting blood all over my car,” explains Courtney.
Like his great grandfather, Bob Ashburn and uncle, Shad Tulledge, 8-year-old Chase has hemophilia.
Dr. Charles Nakar, pediatric hematologist at the Indiana Hemophilia and Thrombosis Center in Indianapolis, helps them manage their disease.
Dr. Nakar says hemophilia largely affects boys but is passed on through the mothers.
“Hemophilia is a genetic disease that increases the risk of bleeding. In general it's signs of bleeding symptoms. Such as easy bruising, nose bleeds, sometimes swelling of the joints because of bleeding into the joint space,” explains Dr. Nakar.
The disease is something Bob Ashburn knows a lot about. He's been living with the disease all his life and lost two uncles to hemophilia. He says when he was growing up, living with hemophilia was an embarrassment.
“My mother was very, very protective of me. I’d be sitting in school and just get a nose bleed. It couldn't get it stopped. I played no contact sports,” says Bob.
However, life is different for him now, and it’s mainly due to the improved treatment Bob has gotten through the Indiana Hemophilia and Thrombosis Center.
Now able to infuse himself with the factor his body is missing, he says it saved his life. “After quadruple bypass surgery and heart bypass, I'm here.”
Bob's grandson, 25-year-old Shad Tulledge, also lives with hemophilia, which was passed on from his mother. With help from the Thrombosis Center he too can infuse himself at home twice a week.
“I am going to Hawaii next week and I’m going to try to surf. Before, I would never even think about trying to surf,” says Shad.
Chase says while he won't play football, like his uncle, he plans to be active. “I want to do swimming, and I want to do more bowling, and I do want to do a little bit of karate.”
Courtney says she knew when she was pregnant with Chase life wouldn't be easy. “I knew if my mom could do it, I could do it.”
The Tulledge family says the Hemophilia and Treatment Center, with doctors who travel from Indianapolis to South Bend, changed their lives.
Dr. Nakar agrees that treatment has been life changing for hemophiliacs. He says, “If you take kids in our era, they have normal lives, and our center actually helps them thrive and have a full life and achieve their goals.”
The Tulledge family knew there was a family history of hemophilia because of Bob's uncles, but many times people go undiagnosed for years.
March is Hemophilia Awareness Month and if you'd like to learn more about the signs for hemophilia and the Indiana Hemophilia and Thrombosis Center click here