Living With Hemophilia

There are currently around 20,000 males in the United States who are living with hemophilia. (Women, who are genetic carriers of the disease, very rarely experience any of the condition’s symptoms.) "Hemophilia comes in several shades of gray, and not everyone who has the condition will be affected in the same way,” says Bartholomew J. Tortella, MD, Medical Director on Pfizer’s Hemophilia team. 

That said, most boys and men with hemophilia, and those caring for them, will face similar challenges and concerns as they transition from one stage of life to another. Read on to learn how people with hemophilia and their parents and/or caregivers can make that path through life a bit smoother.

Hemophilia 0-9

0-9 Years:

Raising Awareness

As a parent or caregiver of a child with hemophilia, you’ve likely learned a lot about the disease and how it will affect your child. But not everyone is as educated. It’s up to you to help the people involved in your child’s life learn more about hemophilia and how they can help your son.

  • Reassure others that hemophilia is not contagious. Yes, this may seem obvious to you, but it may not be to everyone. Stating this fact can also help start the conversation about hemophilia.
  • Talk with your child’s caregivers and/or teachers about what they can do to help. They should know that a bleed will need to be treated right away and that they should call you right away.
  • Explain to school staff and the parents of your son’s friends that they don’t need to be overprotective. “Children with hemophilia don’t bleed more rapidly than those without; they bleed longer.” says Dr. Tortella. You should explain which activities your child is allowed to participate in (swimming and biking, for example) and which should be avoided (football, hockey, and trampolines, to name a few).
  • Provide caregivers and school staff with written information about your child’s hemophilia type, his factor deficiency, emergency contact information, and any prescribed treatments.

Hemophilia 10-19 years

10-19 Years:

Becoming Independent 

As your child gets older, he’ll gradually begin to take a more active role in the management of his condition. As his parent or caregiver, you should try to empower and enable him to do just that.

  • Look into summer camps designed specifically for boys with hemophilia. These safe yet fun environments give kids the chance to bond with other boys with the same condition. At camp, boys also have the chance to learn more about living with hemophilia, including how to self-infuse prescribed medications.
  • Regularly remind your son that hemophilia does not need to define him. While there are clear rules that will need to be followed, it’s important that he is encouraged to explore his interests and hobbies.
  • Encourage teens to gradually take charge of their healthcare. He should learn to recognize the signs and symptoms of a bleed, contact his healthcare team when appropriate, engage in appropriate physical activity to keep muscles flexible and joints strong, and understand the potential consequences of alcohol and drug use.
  • Teach teens and college-age men to treat their condition regularly. “Some kids with hemophilia fall off the path during their teen years and only treat hemophilia when they have a bleed, rather than taking a dose prior to a planned activity like golf or tennis” according to Dr. Tortella. “Repetitive bleeding into joints can cause damage and lead to arthritis at an early age.”

Hemophilia 20+ years

20+ Years:

Staying on Track

“People with hemophilia can and should live a relatively normal life,” says Dr. Tortella. In fact, men with hemophilia have a life expectancy almost equal to that of the general male population. Once someone with hemophilia begins caring for himself and possibly living on his own, though, it’s important that he continues to practice healthy habits.

  • Getting and staying in shape is key. Exercise can promote healthy bones, joints, and muscles.
  • Understand your insurance options. Being able to afford your required healthcare and prescriptions as you age is just as important as working to stay healthy on your own.
  • Take an active role in your care by working with your healthcare team. You should also always have on hand the contact numbers and addresses for people, clinics, doctors, and health centers that can help you in an emergency.

References

  • 1. Centers for Disease Control and Prevention. Data & statistics. Accessed January 29, 2014.
  • 2. National Heart, Lung, and Blood Institute. What is hemophilia? Accessed August 1, 2013.
  • 3. World Federation of Hemophilia. Guidelines for the management of hemophilia. Accessed May 15, 2013.
  • 4. Petrini P and Seuser A. Haemophilia care in adolescents – compliance and lifestyle issues. Haemophilia. 2009; 15(suppl. 1): 15–19. doi: 10.1111/j.1365-2516.2008.01948.x
  • 5. Manco-Johnson MJ, Abshire TC, Shapiro AD, Riske B et al. Prophylaxis versus episodic treatment to prevent joint disease in boys with severe hemophilia. NEJM. 2007 Aug 9; 357(6): 535-44. doi: 10.1056/NEJMoa067659
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