Summer 1998 - Factor Nine News

Summer is usually the most active season with lots of outdoor activities and sports. Many individuals with hemophilia and their families are concerned about just what kinds of physical activities they can safely participate in. To provide some guidance in this area, the National Hemophilia Foundation and the American Red Cross have published a booklet titled “Hemophilia, Sports, and Exercise” which we will highlight in this issue. The booklet can be obtained from NHF by calling them toll free at (888)INFO-NHF.

The booklet focuses on answering the question whether children and adults should participate in sports and other physically-oriented recreational activities. The answer is a resounding “Yes!” Such activities provide important physical and psychological benefits, and the risks involved can usually be managed by adequate preparation and good judgment. However, because individuals with hemophilia vary widely in their physical capabilities and severity of disease, decisions regarding the activity level must be made by the patient, his family, his physician, and the hemophilia treatment center staff.

The potential problems the hemophiliac faces in participating in physical activity are the same as those faced in everyday life, mainly internal bleeding into the joints and, less frequently, bleeding into the head or the gastrointestinal system. Studies have shown that children whose joints are supported by well-developed muscles have fewer spontaneous bleeding episodes. Interestingly, other studies have shown that the emotional state of a child with hemophilia can influence the frequency of bleeding episodes. Unhappy, inactive, overprotected children tend to have more frequent bleeding episodes than those who develop a more assertive, independent lifestyle. Physical activity helps build stronger muscles to give better support to the joints as well as improving the patient’s overall health and fitness. It also can greatly improve emotional well-being by improving self-esteem and providing social interaction. Most experience shows that rather than increasing risk, regular participation in physical activity actually improves overall health and decreases the frequency of bleeding episodes.

The key to success is preparation. It is suggested that this start with an examination by an orthopedic surgeon or a physical therapist to evaluate joint motion, ligament stability, muscle strength, and flexibility. If the effects of previous injuries are evident, a program to eliminate those deficiencies should be undertaken. Conditioning is next. This should begin well before the starting date for the sport or activity. This “preseason” program should focus on strengthening identified areas of weakness, as well as muscle groups used in the selected activity. It should also include general cardiovascular conditioning via aerobic exercises and practice of skills needed for the chosen sport.

Conditioning and exercise should continue during the season. Stretching is especially important as it is for athletes without hemophilia. This should include a ten minute warm-up prior to the activity and a ten minute cool-down afterward. Also important is the use of properly-fitting safety equipment appropriate to the sport, proper instruction in the basics of the sport, and use of playing fields in good condition equipped with proper safety equipment.

Such preparation will help to minimize, but not eliminate, injuries and bleeding episodes. All individuals with Hemophilia still need to be prepared to treat and/or prevent bleeding episodes, by having Factor IX concentrate available. The usefulness of Factor IX infusion immediately prior to a game or activity depends on the individual patient and should be discussed with the hemophilia treatment center staff. Athletes who experience frequent bleeds may find it beneficial to receive a prior prophylactic injection while those who rarely experience bleeds may find that unnecessary. Some athletes receive injections prior to games but not prior to practice sessions. Since bleeds should be treated as promptly as possible, children with hemophilia should be educated to recognize the early signs of bleeding. Delayed treatment is likely to increase the severity of a bleed which could force the individual to withdraw from the sport for an extended period of time, or even permanently.

The booklet contains an extensive list of sports/activities ranked into categories of risk to the participant. Category 1 activities like bicycling, golf, swimming, and hiking or walking are safe for most hemophiliacs. Category 2 includes the majority of sports such as baseball, basketball, gymnastics, running, soccer, and many others. This category involves higher inherent risk, but the physical, social, and psychological benefits often outweigh the risks. Category 3 includes sports like football, hockey, and wrestling which are not recommended for persons with hemophilia.

The booklet contains a great deal more valuable information. It is especially recommended to parents of hemophiliacs who should benefit from its fair discussion of the risks and benefits of participation in physical activities.

1998 WINNERS OF THE SECOND ANNUAL GENETICS INSTITUTE INC.,

Sharing a Brighter Tomorrow Hemophilia B College and Vocational Scholarships

Congratulations to the College Scholarship Winners: Brett Patrick Bruning, of Ellsworth, Kansas, Kenneth W. Bush of Charlotte, North Carolina, Daniel Cotter Korn of Columbia, South Carolina, Jason M. Maurer, Buffalo, Minnesota, and Christopher Edward Pontbriant, of East Hampton, Connecticut, and congratulations to the vocational scholarship winner: Cyrus Salimi, of Toronto, Ontario.