It takes more than medicine...

 

Do We Do the 5?

Published May 9, 2008

 

Horizons in Hemophilia, Winter 2007

By Shannon Veronesi, Health Educator

 

Adapted from: Nazzaro, A.M., Owens, S., Hoots, W.K., and Larson, K.L. (2006) "Knowledge, Attitudes, and Behaviors of Youths in the US Hemophilia Population: Results of a National Survey." American Journal of Public Health, 96(9), 1618-1622.

A survey conducted by the National Hemophilia Foundation (NHF) revealed that youth (13-21) living with hemophilia felt that they could not prevent complications associated with their bleeding disorder. Of the 459 youth surveyed, some of the results showed that:

  • 36 percent believed that joint disease could not be prevented
  • 60 percent managed hemophilia by avoiding physical activity
  • 31 percent treat bleeds within one hour
  • 78 percent could not describe how hepatitis C is transmitted and;
  • 67 percent did not know how hepatitis B is transmitted

The survey was developed based on the National Prevention Program messages called, "Do the 5". Hemophilia Treatment Centers and NHF Chapters across the nation have implemented these messages to help reinforce the fact that many complications associated with hemophilia can be prevented. In this day and age of prophylaxis and teaching clients to recognize and treat bleeds early, preventing joint damage is possible. Even better, it has been shown that those who do participate in physical activity on a regular basis can prevent joint damage from occurring. This is often misunderstood since some sports can cause injury, so it is important to participate in a sport and/or activity that is considered safe (i.e., swimming).

An alarming number of youth surveyed could not describe how hepatitis B and C are transmitted. Although most said that they did receive information on hepatitis, very few knew hepatitis B and C could be passed through blood. Only 33 percent were aware that hepatitis B could be spread through sexual activity. The knowledge regarding the transmission of hepatitis infection is crucial to managing this chronic disease. HoG is committed to delivering information that can help our clients live healthy and successful lifestyles. We will continue to educate our clients and their families about these important prevention messages. Further educational opportunities regarding this information are available through our nurses, social workers, and at HoG client activities.