My Story

Real Stories from People living with Hemophilia

Jane’s Story

“Leland has hemophilia. At 15 months old, Leland developed a complication called an inhibitor. This means that his body, his immune system, fights off the medicine – the infused factor VIII. That, quite honestly, pulled the rug out from underneath us, when the preferred methods of treatment were no longer options for us. The alternative clotting factors that we use to control bleeding are much less effective. His treatment more closely resembles that which was done a generation ago; he doesn’t benefit from a lot of the advances in treatment that help his peers who don’t have an inhibitor.

“The complications of long-term damage to his joints, the unrelenting pain, just general quality of life, that’s been by far the biggest challenge. Another big challenge for us as a family and, for my husband in particular, is the high cost of hemophilia in general and treating an inhibitor in particular. My husband has had to make career choices based on maintaining good health insurance.

“Having a son with hemophilia and then, the added challenge of an inhibitor, is not always easy. As a parent, I would love to fix things and make everything better. The inhibitor has taken away a lot of the control that parents have in effectively managing hemophilia. We don’t really have a proactive management of the bleeding; we have to wait until bleeds happen, and then deal with them from there. I’ve watched him sit out and miss a lot of important life experiences, including most of high school. It’s not what I envisioned when he was a baby and first diagnosed.

“Fortunately, there have been many other positive life experiences that have come from having hemophilia. He’s been in Washington advocating to his legislators, he’s a regular guest speaker at Harvard Medical School, and he’s traveled around the country for community events. How many teenagers get to do that? Hopefully these experiences help maintain some balance, for both Leland and our family as a whole.”

CDC would like to thank Jane and her family for sharing this personal story.

Sonji’s Story

“Every time a bleed happens, I hold my breath to see if Thomas’s body is going to respond to treatment – and I never know if it’s going to take one treatment or a week of multiple infusions daily to stop a bleed.”

Few people know the challenges of living with hemophilia and an inhibitor better than Sonji Wilkes and her family of five from Englewood, Colorado. On August 7th, 2003, Sonji and her husband Nathan welcomed their son Thomas into the world. Thomas, who has severe Hemophilia A, developed an inhibitor when he was 8 months old, soon after beginning treatment for his hemophilia. He suffered his first joint bleed at age 2 and was temporarily confined to a wheelchair following a bleed into his ankle joint in October 2006 that took over two months to resolve.

According to Sonji, bleeding management of a patient with an inhibitor is a real challenge. Currently there are only two products to choose from to control bleeding, and only one product approved for prophylaxis (preventative treatment). “Every time a bleed happens, I hold my breath to see if Thomas’s body is going to respond to treatment – and I never know if it’s going to take one treatment or a week of multiple infusions daily to stop a bleed. It’s scary. I worry that my child might literally lose life or limb and I only have a limited range of medical interventions to help him.”

Venous access (finding a vein in which to infuse the factor) is another huge challenge confronting the Wilkes family because Thomas receives infusions of factor daily. When Thomas bleeds and needs multiple infusions per day, the need for access is even more critical. A venous access device—a long, thin tube called a catheter, which is inserted into a vein—allows a physician to deliver medicine directly into the bloodstream without repeatedly puncturing the blood vessels.

According to Sonji, Thomas’s veins are hard to stick on a regular basis and he has so far had multiple PICC lines (a peripherally inserted central catheter line, which is inserted into a vein in the arm and goes up the vein all the way to a large blood vessel in the chest), as well as five ports (devices that are surgically placed under the skin of the chest and connected directly into a large vein in the upper chest for infusions).

“It is uncertain if he will require another port, or even if his body will hold up to another insertion, not to mention the bleeding and infection risks involved with the surgical placement. It is terrifying to have the very medication that can save his life in your hands, but not know if you’ll be able to administer it because of access issues.”

Other challenges of living with an inhibitor that Thomas and his family have faced include management of short- and long-term pain from repeat joint bleeds, dependence on and side effects from pain medications, inability to participate fully in sports and activities due to physical limitations, many school absences, and concerns over the costs of medications.

“There’s worry over the affordability of the drugs available to him. There’s worry over access to his medical team and if my insurance will allow me to utilize their expertise. There’s worry over his mental and emotional condition. There’s enough worry to fill an ocean.”

Despite all of these challenges, the Wilkes family maintains a positive spirit and a focus on the gratifying aspects from their struggles with hemophilia and an inhibitor.

CDC would like to thank Sonji and her family for sharing this personal story.

If you would like to share your personal story, please contact us at Contact CDC-INFO