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14 HEMOPHILIA TODAY PHYSICAL FITNESSSUMMER 2002AND BLEEDING DISORDERSas an equal in these activities. As he gets“too cool” to be seen with his family, hecan bring a friend along on these outings.What is an acceptable level of risk?Discuss this with your hemophiliatreatment team. Football is notrecommended, but soccer might beacceptable. Bicycle riding is usuallyencouraged (with a helmet, of course) buthorseback riding might be more risky.Can you get proper equipment for yourchild and does it fit properly? If the answerto either of these is “no”, the decision ismade for you.If you live in a smaller town, yourchoices might be more limited. If you livein a real hockey town, you might have tosuccumb to the pressure and let your sonat least learn how to skate. There is somemerit to letting your son participate, learnthe skills and the rules of the game, anddevelop an interest in the sport. As he getsolder and more contact is involved, he mayfind that there are too many injuries to goon playing. But he may have the skills toallow him to referee or coach.If you choose this route, there are thingsyou can do to minimize the risk. Find outas much as you can about the coaches andtheir attitudes. Do they have a “play towin” or a “play to play” philosophy? Doeseveryone get a chance to play, or only thestars? Do they emphasize skilldevelopment and sportsmanship orwinning at any cost? If your child is injuredand has to sit out, will they be supportiveor will they be negative because your sonhas let the team down?There are other things to consider thathave nothing to do with hemophilia. Whatactivities are suitable for your family?There are parents whose children do NOThave hemophilia who draw the line atcontact sports. Other families are unable tocommit themselves to early morningpractices, out-of-town tournaments and soon, so participation in activities requiringthat level of commitment is not even anoption.Believe it or not, and despite the factthat “EVERYONE else’s parents let THEIRkids play”, children do survive these familyrules. Your child’s joints need to last alifetime. Help him choose wisely.Isla Crawford, Certified Child Life Specialist,works at the Children’s Hospital inWinnipeg.INTERVIEW BY KATHY MULDERSilvana’s StoryGrowing up with aTarget JointSilvana is a vivacious teenager whoenjoys music, sports, drawing andbeing with her friends. She is atypical teenager except that she has ableeding disorder. She agreed to beinterviewed so that her story might helpother kids.KM: You were little when you startedhaving trouble with your joints. What wasthat like?S: It was hard for my parents. I wanted todo stuff. They always wanted to overprotectme. When I started school, there were lotsof games I couldn’t play and I had to sitout. I wanted to rebel, but if I played, I justgot hurt and that was no good either.KM: How did the other kids treat youwhen you had to sit out?S: They treated me like I was some tickingtime bomb that would blow up any minuteor else they treated me like fragile glass.Some kids started a rumour that I hadcancer. Some kids thought I had somehorrible contagious disease that they wouldcatch from me.KM: How did you handle thosemisconceptions?S: When I was small, I went to the teachersfor help. Now I have good friends that helpme and they understand. Even now,sometimes when I meet new people andthey find out I have a bleeding disorder,they get all nervous, and I feel like a freak.But my friends help a lot.KM: You must have missed a lot of thingsin Phys Ed. What was that like?S: Well, this past year was especially bad.The Phys Ed teacher was also the footballcoach and I bet I had to sit out at least aquarter of the classes because they weredoing things like lacrosse, football, andsoccer. In a co-ed class that can get prettyrough so I couldn’t take the chance ofgetting hurt. The worst is actually all-girls’basketball. They girls scratch and grab andget really rough. It’s actually less dangerousto play basketball with just the boys!KM: Do you think there are things thatyou missed out on because of yourbleeding disorder or your target joint?S: I missed out on being active. I couldn’tkeep up with my friends. They would go tosoccer lessons, Judo lessons and stuff, and Iwould have liked to do those things, too.But I try not to think about it, and I reallytry not to dwell on it.KM: You recently started an exerciseprogram. What changes have you noticedsince you started exercising more regularly?S: I feel more fit. I can do more. I have nothad any recent injuries, especially my targetelbow. I am doing yoga, too, which hasmade me stronger and more flexible. Ihope that if I continue, I will be morecapable and maybe even try soccer. I lovesoccer.KM: Do you have any “words of wisdom”for other kids who can’t do all the thingsthey would like to?S: Don’t worry. It seems like a big thingwhen you are little, but it really isn’t. Takecare of yourself. Be thankful for yourfamily and your teachers who are there tohelp you and watch out for you. And whenyou are older, like an adult, try to teachothers about what you went through andthat it’s not that bad.