Would your teen treat a bleeding episode in an hour? Does he believe joint disorders are inevitable? A recent survey by the National Hemophilia Foundation (NHF) and the Centers for Disease Control (CDC) found that youths with hemophilia are surprisingly misinformed and uninformed. This can put kids at risk for complications later in life. Arm your child with the information he needs.

The survey, published in the American Journal of Public Health, revealed that:¹

• 36% of the surveyed youth, ages 13 – 21, thought joint disease cannot be prevented, which is untrue
  
• 60% managed their hemophilia by avoiding physical activity, yet we know that safe physical activity should actually be encouraged
  
• Just 31% of those surveyed treat bleeding episodes within one hour

Here are a number of resources to help educate your child or teen about their hemophilia so they can remain healthy throughout their lives.

• The World Federation of Hemophilia’s Hemophilia in Pictures is an animated education program that provides an interactive way to learn about hemophilia.
  
• Hemophilia Treatment Centers (HTCs) are valuable local resources for families.  Find your nearest HTC.
  
• The National Hemophilia Foundation (NHF) provides education, research, and advocacy on behalf of people with bleeding disorders.
  
• The NHF also has a number of Youth Programs – including the NHF Youth Leadership Institute – and other programming available at their annual meetings for children and teens.
  
• There are several books and newsletters available to help parents teach their children about hemophilia, including these from LA Kelley Communications:
  
  • Raising a Child With Hemophilia: A Practical Guide for Parents
    
  • Teach Your Child About Hemophilia
    
  • Starting young is one way to build your child’s knowledge over time. Go to Involve Your Child Early

Read the NHF and CDC study¹ and share your comments below.

Share your favorite youth education resources. Post your ideas as a review to this article, and check here regularly for new ideas from others.

¹ “Knowledge, Attitudes and Behaviors of Youths in the U.S. Hemophilia Population: Results of a National Survey”, Ann-Marie Nazzaro, PhD, Sally Owens, BSN, W. Keith Hoots, MD, and Kelly L. Larson, MPH, American Journal of Public Health, September 2006.