Hemophilia - he·mo·phil·i·a ("hE-m&-'fil-E-&)
You never know when a medical emergency will strike, if you have hemophilia, there is no such thing as “minor” bumps and bruises

“When I have my MedicAlert necklace on, I feel secure wherever I am”

Living an Active Life with Hemophilia. An interview with Cynthia Burger and her Son, Doug Burger

Doug Burger

Doug Burger, 13, of Herndon, VA was diagnosed at birth with hemophilia. His mother, Cynthia is a carrier, but his father and younger brother do not have it. “It came as a shock at first, but we haven’t let it prevent him from living a normal childhood,” said Mrs. Burger. “The hematologist at the hospital suggested we get him a MedicAlert bracelet, and we ordered one immediately after he was born. Although I’m a carrier, hemophilia was still foreign to us and we had a lot of learning to do.”

Despite Doug’s hemophilia, which is considered at the moderate level, there was no real major life altering changes occurring in the Burger household. “We ‘baby-proofed’ the house when he was growing up and watched him closely wherever he went, but that’s normal for all parents of newborns,” said Mrs. Burger. “We just didn’t overdo it, because of his hemophilia.”

At his elementary school and at his junior high school, his parents informed the school nurses about his condition. Since his hemophilia is moderate however, Doug does not experience bleeds from performing everyday activities, so his parents didn’t feel it was necessary to take any extreme preventative measures while he was at school. “The school nurses got to know us well, since there were very few children in the school district with hemophilia,” said Mrs. Burger. “Doug knows what to do in case he’s bleeding and fortunately for us, his school is only two blocks from home.”

Today as an 8th grader at Herndon Middle School, Doug continues to lead a very active life. Even though his parents won’t allow him to play contact sports such as hockey and football, Doug is busy year round playing basketball, baseball and golf, with basketball being his favorite sport. Doug’s right ankle is his “target joint” and is where the majority of his bleeds have occurred.

“Soccer was out also, because sometimes the playing field can be uneven and I’m concerned about ankle sprains,” Mrs. Burger said. “He may need bone fusion surgery on his right ankle in the future, barring any medical breakthroughs, but for any physical activities he does now wear an Arizona brace (a custom-made ankle brace) which professional athletes have been known to use.”

Although there can sometimes be physical contact in basketball, Doug has had only one close call of being pushed in the side that caused him some concern. “It was nothing too bad, there was no bruise,” said Doug. “It was near the end of the game and someone shoved me a little.”

Doug’s parents know they can’t be with him all the time and Mrs. Burger is more concerned about things out of her immediate control. She believes that this is where the MedicAlert service becomes critical to managing Doug’s condition. “Fortunately, there hasn’t been an issue where we had to have you (MedicAlert) notified,” said Mrs. Burger. “But it gives me and my husband some relief knowing that Doug has his necklace, and his information is always available in case we’re not around during an emergency.”

“When I have my (MedicAlert) necklace on, I feel secure wherever I am,” said Doug, who plans to try out for the freshman basketball team when he goes to high school next fall.

Despite a school district law preventing students from wearing jewelry at sporting events, (including Doug’s MedicAlert dog tag bracelet), his coaches and teachers are aware of his condition. “We want him to be a normal teen and hang out with his friends and play sports,” said Mrs. Burger. “My biggest challenge is seeing he has some restrictions. We’ve told him though not to limit himself and just do your best.”

When Doug was first diagnosed, his parents attended some local support groups to become more familiar with hemophilia. To this day, his parents stay very well informed with all local and national publications published by The Epilepsy Foundation. Wearing his MedicAlert emblem is just one more aspect of Doug’s commitment to manage his own condition as much as possible. He enjoys wearing his black dog tag emblem, which he picked out himself. “He attended camps with other children with hemophilia early on,” said Mrs. Burger. “But now he just wants to attend sports camps instead.”

In his spare time away from his homework and sports activities, Doug likes listening to a variety of music from rock to rap, and watching televised sports – especially his favorite basketball team, the Los Angeles Lakers, and his favorite baseball player and team, Derek Jeter of the New York Yankees.

From all indications, Doug has not let his hemophilia stand in the way of whatever he wants to do. Doug seems modest when asked if he could be seen as a role model for other teens growing up with hemophilia and telling them how to live with it. “I don’t really notice I have it,” Doug said. “I’d say, don’t put limits on yourself and just live life as normally as you can.”