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20 HEMOPHILIA TODAY PHYSICAL FITNESSSUMMER 2002AND BLEEDING DISORDERSHemophilia Today: How did you firstbecome interested in hemophilia?Kathy Mulder: It’s actually a long story,with three chapters. First, in our finalyear of training, we had to do a majorpaper. One of my classmates had done aclinical placement at the Children’sHospital where she worked withDr. Aggie Bishop and the hemophiliaprogram, so she wrote her paper on therole of physiotherapy in hemophilia.This was in the early 1970’s andcryoprecipitate had only just becomeavailable, so physiotherapy forhemophiliacs was a new concept. Weproofread each other’s papers, and Ithought it sounded interesting, but neverthought much more about it.Second chapter—my first job inSaskatoon. There, a boy was admitted tohospital to see what could be done tostraighten his knee. He had a terribleflexion contracture. There were also twobrothers who had bad knees as well. Theorthopedic doctor referred all three boysfor physiotherapy. Trouble was, no oneon staff had ever treated a hemophiliacbefore! Since I had a BIT of knowledgefrom reading my friend’s paper, Idecided to see what we could do.Third chapter— when I returned toWinnipeg, I worked at the HealthSciences Centre in the AdultPhysiotherapy Department. One of myfirst patients there was Stuart Johnson,whom the older people in thehemophilia community will remember.Again, my smattering of knowledge wasmore than my colleagues had, so Iworked with Stuart extensively. Hetaught me so much—about growing upwith hemophilia, about living as an adultwith hemophilia and with terrible jointdisease, and about keeping a positiveoutlook when he could have had all sortsof things to complain about. Every time Ilooked at Stuart’s crippled joints, Ithought, “Man, we have GOT to dobetter than this.” I soon met many otheradults with hemophilia: Ed and BarryKubin, and Jim Love were among “myboys”. All of them had grown up withlittle or no treatment, all of them hadbad joints, and all of them could tellsome pretty scary stories about physio-“terrorists” that they had encounteredalong the way. I learned TONS from eachof them, and I think they learned thatexercise didn’t have to be torture, andcould even be good for you!Hemophilia Today: Why are you still soinvolved with hemophilia?Kathy Mulder: Probably the biggestreason is that it has been so fascinating towatch the changes that have gone on overthe course of my career. When I began, itwas inevitable that hemophiliacs woulddevelop joint disease. The discovery ofcryoprecipitate in the mid-sixties meantthat joint surgery had just become apossibility. Next, I saw the excitement andthe hope of a better life that came withthe availability of concentrates. The guyscould keep their treatments at work andthey could travel freely becauseconcentrate didn’t have to stay frozen likecryo did. I saw the heartbreak thatfollowed as those same concentratesturned from a blessing to a curse. I lostmany friends during the AIDS years, andwatched as the hemophiliac populationwas decimated. But now withrecombinant products and prophylaxis, Isee healthy children with healthy jointsparticipating in sports and leadingnormal lives! To see so many hugechanges in the course of one career isamazing!There are only a few therapists stillaround who remember what those badjoints looked like. Now my job is toremind young therapists and newfamilies not to take healthy joints forgranted!Hemophilia Today: Were there anyparticular people who influenced youalong the way?Kathy Mulder: I have been fortunate tohave had many mentors and role modelsalong the way. In the hemophiliacommunity, I had many teachers. Ialready mentioned Stuart. He had theforesight and the vision to lay thegroundwork for the Manitoba Chapter(now Hemophilia Manitoba). Ed Kubinwas one of the architects of the “MillionDollar Club” which was developed tofund hemophilia research. Ed could be adifficult person, but his dream ofimproving things for Canadianhemophiliacs was very strong. Now Itreat his grandsons! I remember quitevividly meeting Frank Schnabel, founderof the World Federation of Hemophilia.He was a remarkable man. And my longtimefriend, Jim Love, has been myteacher and has also helped me teach thenext generation. I have a great photo ofhim taken at a family weekend that washeld last summer. I invited him to comeand talk to the 7-12 year-old boys abouthis experiences growing up in ‘the oldendays’. In the photo he is surrounded bywide-eyed speechless little boys lookingon as he shows them his damaged knees.That was worth WAY more than anytalking I could ever have done.Hemophilia Today: You were recentlyelected to a World Federation positionwhile in Seville. Could you tell usabout it?Kathy Mulder: Yes, I was elected asJunior Vice-President of the Musculo-Skeletal Committee. This committee ismade up of orthopedic surgeons andphysiotherapists. I’m the secondphysiotherapist to be elected to thiscommittee. I’m just learning what myjob is as I go along.Hemophilia Today: Is there anythingelse you would like to talk about?Kathy Mulder: Yes. I would like toremind all hemophiliacs and theirfamilies not to take anything for granted.We are so fortunate to live in Canadawhere medical care is accessible andfunded. I just came from the WorldFederation of Hemophilia Congress inSpain. Treatment is still available to only25% of the world’s hemophiliacs. Those25% are doing quite well. The other 75%still have terrible joint disease. In ourCanadian system, joint disease should becompletely preventable but I still see it,and I see it in young children. Factor isimportant but it is not the whole answer.Proper management and rehabilitationof EACH AND EVERY joint or musclebleed is just as important. We must neverlet down our guard.