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WINTER 2008-2009VOLUME 16, NUMBER 4
still a crying need for medical services.Some images that are now part of ourpast remind us of the painful gapbetween our Quebec reality and thatof people with hemophilia in Tunisia.While our youngsters suffer lesssynovitis, this is an everyday realityfor young Tunisians. And yet, theserealities separate us as much as theybring us closer, since Rome wasn'tbuilt in a day; this is the case with theCHSQ in Quebec, just like the ATH inTunisia that was founded in 1992.By presenting our challenges and theimpact that the strength of volunteerswho defended and promoted theinterests of the hemophilia communityin Quebec over the years has had,François' story managed to make themunderstand the importance of buildingperseverance and hope, two keyelements needed to mobilize volunteertroops and assure that our objectivesare reached today and in future andthis, regardless of borders and localrealities.Youth involvement: an essentialresourceWhether you're in Montreal or Tunis,youth is synonymous with energy andnew ideas, because they bring newblood to the heart of our institutionsand ensure future leaders. This is whyDavid Pouliot was invited to presenton the importance of youthinvolvement and the various forms itcan take within organizations.Amongst the various reasons to getinvolved that David gave are theimportance of taking charge of yourown health and expressing an opinion.The young people present listenedclosely to David's words. However,discussions with these young peoplehelped us realize certain local realities,such as limited financial resources for
From November 3 to 10, the CHSQmet with their partners from theTunisian Hemophilia Association (ATH)in order to continue the internationaldevelopment activities that have beenongoing for the past three years. Theteam from Quebec included FrançoisLaroche, CHSQ President, DavidPouliot, Vice-president and activeyoung CHSQ volunteer along withJoumana Yahchouchi, CHSQ Programand Fundraising Coordinator.Their mission was to share variousCHSQ experiences in order to enrichthe knowledge and skills of membersfrom the Tunisian hemophiliacommunity. There were differentthemes on the program in Tunis andSfax: the evolution of CHSQ activitiesand the importance of involving youth,as well as the challenge of fundraising.A history of the Quebechemophilia communityexperience: a message of hopeIn front of an audience that includedabout 30 young Tunisian hemophiliacs,François Laroche presented the historyof treatment for the Quebec hemophiliacommunity from yesterday to today,as well as the evolution of CHSQactivities since its founding in 1959.At first view, one would think this kindof presentation wouldn't be relevantin a country like Tunisia where there's
some families or costly transportationservices in terms of time, which wereall valid obstacles to the possibilitiesof sharing within this group. Despitethis, it's important to make these youngpeople aware and to mobilize them tojoin the group as ATH volunteers. Sincewho's better placed in the hemophiliacommunity to determine interests topromote and the priority of actions totake?In terms of these exchanges, we had achance to see a few potential recruitsemerge, and hope that this meetingwill incite other young people to takeup this, their cause.Fundraising: the crux of the matterFundraising is essential for the survivalof an organization. This is why we triedto present the basics of this exerciseby offering the ATH Board of Directorsand their collaborators a concrete andefficient working method. I presenteda session on how to raise funds, notablythrough self-financing activities thatwould generate real profits.Our Tunisian friends don't lack ideas,but they'll be organizing a “Bowl-a-Thon” - Tunisian style - that shouldtake place in March 2009! Since anumber of ATH members have contactsin the business community, we thinkthere's a good chance that this activitywill be a success in Tunis. Obviously,it's a big challenge if you consider thesocio-economic differences betweenour countries. But we're confident thatthe members of ATH are up to thischallenge, if only because of theincredible determination we'veconsistantly seen in their progress andthis, by counting solely on the volunteerinvolvement of their members.
A Successful Meeting between ATH and CHSQINTERNATIONAL TWINNING WITH TUNISIA
cont’d on page 9 >
byJoumana Yahchouchi
Program andFundraisingCoordinator
2
A WORD FROM THEEDITOR
The past few weeks have beenespecially busy at the CHSQ. AFamily Weekend for those livingwith inhibitors, the Dance for Lifefundraising event, the trainingweekend, the trip to Tunisia, a newExecutive Director, a revue ofactivities and planning for 2009,all this work required time andenergy from volunteers and staff.You can read all about it in thepages of this issue, texts that offeran excellent summary of theseactivities.I'd like to mention the InternationalTwinning with the Associationtunisienne des hémophiles (ATH).For four years now, we've beenworking with this nationalorganization, a member of theWorld Federation of Hemophilia.I must admit that the progress ATHhas made, which is reflected in anincrease in the number ofhemophiliacs diagnosed in Tunisia,as well as improvements in thecare and quality of life of peopleaffected, is very impressive.Education workshops, facilitatedby health care professionals ormembers of CHSQ and ATH,combined with the involvement,skills and determination of ATH
volunteers, is very promising for thefuture. ATH can be proud of theirsuccess these past few months. Ofcourse, there's still a lot to do, butATH is truly on the right path.And on the home front, as weexplained in the last issue, a numberof new activities will be initiated in2009 to better serve you. They willmatch the findings from the surveyof members' needs. Together, we'llcontinue to improve the quality oflife for people with bleedingdisorders in Quebec.I'd like to end by welcoming ournew Executive Director, DanièleCorbeil, who came to the CHSQ with15 years of experience incommunity organizations. We wishher good luck in her new job andwe hope that with the experienceshe brings, she'll be able to lead theCHSQ closer to its vision: a worldwithout the pain and sufferingcaused by inherited bleedingdisorders. §
SUMMARY
EDITORIALSTAFFEditor:François LarocheContributors:Claudine Amesse, R.N.Danièle CorbeilMartin KulczykMichel LongLisa-Marie MathieuClaude Meilleur, R.N.David PouliotMagalie RinfretJoumana YahchouchiProofreaders:Danièle CorbeilPatricia StewartJoumana YahchouchiPage Layout:François LarocheTranslation:Patricia Stewart
International Twinningwith TunisiaA Successful MeetingBetween ATH and CHSQ 1 & 9
A Word from the Editor 2
Editorial 3A Word from theExecutive Director
Fundraising 4
Inhibitors’ Corner 4
Parents’ Corner 5A Hemophiliac in my daycare…What do I do?
CHSQ Activities 8
Nurses’ Corner 9Education Days for Teenswith Severe Hemophiliaat the CHU Sainte-Justine
Focus on Hepatitis C 10News in Brief
Youth Echo 11Impressions frommy Trip to Tunisia
National Youth Committee 11
Winners of the 2008Scholarships 11
In a Word 12
byFrançois Laroche
Young hemophiliacs, future and present membersof the ATH Board, and members of the CHSQ duringa workshop for youth, held at the recently builtHemophilia Treatment Centre in Tunis lastNovember 6.
The opinions expressed in the various columns are those of the authors and do notnecessarily represent the viewpoint of the CHSQ.To let us know your comments or to give your opinion on any related topics,send your text to the following address:L'Écho du facteur, CHSQ, 10138, Lajeunesse, Suite 401,Montreal (Quebec) H3L 2E2Telephone: 514-848-0666 or 1-877-870-0666Fax: 514-904-2253or by e-mail to the followingaddress: [email protected]: www.hemophilia.ca
• L'Écho du facteur is a quarterly newsletterproduced by the Quebec Chapter of theCanadian Hemophilia Society and isdistributed to its members.
Circulation: 250 in French, 100 in English
Legal deposit: Bibliothèque nationale duQuébec, 2009.
Change in the Executive Director Position Readers will please note that between the moment this newsletter was being written and the moment it went to press, the CHSQ terminated its contract with Danièle Corbeil as Executive Director. Joumana Yahchouchi will assume this responsibility in the interim for an undetermined period, until the hiring process has taken place and this important position in our organisation filled. Thank you for your comprehension. Staff and volunteers with the CHSQ have the welfare of the organisation at heart for all people living with an inherited bleeding disorder or living with the consequences of a contaminated blood transfusion. We’d like to take this occasion to wish you all an excellent 2009 filled with health and love.
3
EDITORIAL
For you, adults living withhemophilia and HIV and/or HCV,as well as for your spouses,individualized psychologicalsupport and, if you wish, groupsupport. Those concerned,members of the organization, willsoon be approached and willreceive all pertinent informationindicating how to benefit from thispersonal consultation service.For you, parents of children withhemophilia, both newly diagnosedas well as those already members,a more consistent and bettersupervised follow-up forinformation about your particularneeds. Here we'll be calling on yourparental solidarity to initiate anexchange network to shareexpertise aimed at improving oursupport for new parents. Thanksto your experience, you will helpsupport newly diagnosed parentsin order to reassure them duringtheir initial learning process. We'llbe calling on you to create anetwork that will work throughteleconferences, spread out overthe year.For you, women who are carriers,a flexible formula that intends firstof all, to offer moral supportresulting in the creation of asupport network where you'll beable to establish connections, aninitiative that can only be beneficialand satisfying.For you, families living withinhibitors, we're thinking aboutyou a lot and we propose: a columnin each issue of our newsletter toinform you about the multiplefacets of this reality that you dealwith on a daily basis. Also, we'llpropose a respite weekend forparents where the children will betaken care of by healthprofessionals, while you parents
Yes, it's me, your new ExecutiveDirector. For those of you whothink that I'm replacing AlineOstrowski, I'd prefer to think ofmyself as taking over from her.I'll do my best to offer you myskills and empathy to defend yourcause and improve the quality oflife for people affected by aninherited bleeding disorder aswell as those affected by theconsequences of a contaminatedblood transfusion.I've arrived at a very stimulatingtime, having to supervise andcoordinate both what's alreadyan integral part of the everydaylife of the organization as well asall the new baggage resultingfrom the strategic planningexercise. I'm referring here to thelarge variety of new activities forus, as staff. The immediate effectis to bring us closer to ourgrassroots while, through thecontribution of externalspecialists, integratingconsultation, exchanges andsharing of special knowledge thatyou all can benefit from, if youwish to take the time and sodesire, of course.In the last edition of yourquarterly newsletter, you got tofind out about these additions tothe regular program that weinvite you to take part in. Butsince repetition isn't necessarilya bad thing, I'll list them for youin my own words and the way Isee them. I'll only mention someof the improvements made to ourprogramming in order to bettermeet your needs andexpectations.
can let yourself be pampered witha program of activities speciallyconceived for you to help you dealwith stress and improve yourparenting skills. Add to this, aproject for teleconferencesallowing all parents to shareexperiences, concerns, resourcesand tips, all at a pace to meet yourneeds. What's more, all peopleliving with inhibitors will beinvited at least once a year to aninformation session.
For you, children, teens andyoung adults living withhemophilia, a number of projectsare on our 2009 agenda. First ofall, we'll mention summer campreserved for children and teenswith hemophilia and their siblings.Together you'll have the freedomto explore your independence aswell as enjoy physical activitiesthat will respect the wide rangeof your possibilities.
This is only a brief summary ofthe main orientations that we'reundertaking. There'll be evenmore to come. But first andforemost the success of thisprogram requires the involvementof each and every one of youbecause only together will we beable to reach our goals.
We've been here for you for 50years already and, more than ever,we're calling on you, dearmembers, to come forward bothas volunteers and as partners andparticipants in one or more of ourprojects. Together and onlytogether will we be able to supportour cause and that of ourcommunity.
Supportive, proud, involved andsensitive to your needs. §
byDanièle Corbeil
A Word from the Executive Director
4
FUNDRAISING
Dance for Life: a great success!Last November 1, the CHSQ waspleased to present its benefit showentitled Dance for Life at EspaceDell'Arte in Montreal. The evening,with Daniel Tirado, a young comedian,serving as Master of Ceremonies, wasinaugurated with a word of welcomeby David Pouliot, CHSQ Vice-president,followed by a CHSQ corporate video;it was a great opportunity to educatethe public about the daily reality andchallenges of people and their familiesliving with hemophilia or any otherbleeding disorder, as well as thoseaffected by the consequences of a bloodtransfusion.A colourful programThis event celebrated cultural diversityand allowed us to discover anincredible goldmine of talent. The firsthalf of the show offered fourteen dancetroupes who volunteered to perform,offering a gamut of diverse andentertaining performances. After theshow, DJ Renegate took over to keepthe action going and get spectators upon the dance floor. These are thetroupes who gave the this specialevening its flare: Académie Flamencade Montréal, Balgari, Échine Dõ, Écolede danse Gilles Beaulieu, Estação daluz, Fearless, La Tangueria, Orpheusfrom the Montreal Hellenic Community,Saltimambo, Sirena, Solosalsa, Studio88-Swing and Studio Tango Montréal.And who can forget the breathtakingnumber by the internationallyrenowned tapartist, TravisKnights (seenhere), whoblinded us notonly with theagility of hisdance steps andthe emotion ofhispresentation,but also hispersonal touch.He didn'thesitate toremind
byJoumana Yahchouchi
Program andFundraisingCoordinator
The next wave of Bowl-a-thonswill soon roll in!You'll soon get information about thenext CHSQ Bowl-a-thon that should takeplace sometime in April-May 2009. I'dlike to remind you about the exemplaryinitiative of Nathalie Martel, a memberof the CHSQ, who successfully launchedthe first Bowl-a-thon in Victoriaville inMay last year.And I'll bet that you also have moretricks up your sleeves to organize asimilar activity. Why not follow in thefootsteps of this initiative in Sherbrooke,Gatineau or Rivière-des-Prairies?Red, White and YouApril 17, International Hemophilia Day,will soon be here. It's the perfectopportunity to organize an awarenessactivity or a fundraising event in yourcommunity, at your workplace or at yourchild's school. I'd like to remind you thatwe have a great promotional kit calledRed, White and You that can help youhold an activity like this, and it's easyas pie! You can get your kit bycontacting us right now:[email protected] to Dream for HemophiliaThe Dare to Dream for Hemophiliaactivity offers you nothing less than atraining session in a formula VanDiemen race car on the Bridgestonecircuit, one of the most important onesin North America.By participating in the contest, you canwin one of the places on the circuit!Keep up with the details for 2009 aboutthis contest by visiting the website earlyin the year at www.idaretodream.ca.All you have to do is register andpromote it with those around you!CHSQ pensWe still have some of our CHSQ pensleft. We invite you to fill in the form tosell them to people around you and letthem know about your cause. You cantry this formula: “ 1 pen for $3 or 3 pensfor $10! ”. §
spectators about the reason they werethere: to support the cause that, as heso well reminded us, « unites us all».Encouraging resultsWe can confirm that this evening wasa great success: almost 250 spectatorstook part in Dance for Life, whichgenerated $17,500 in profits. And inall, over 60 dancers agreed to sharetheir passion for the art of movement.We also want to thank our variouspartners who made this event possible:the dancers for having shared theirgrace and energy, but also the varioussponsors and companies who agreedto support this project, including oursilver partners: Bayer, Novo Nordisk,Schering-Plough and the SAQ, as wellas our bronze partners: Baxter, CSLBehring, House of Travel and Molson.Special thanks go to Bombardier,Héma-Québec, Groupe Jean-Coutu andthe McCarthy-Tétrault Foundation whoagreed to support the organization,each in its own way. We also thank ourdistributors and suppliers who allowedus to add that special touch to theevent. We mustn't forget the publicwho chose to participate in this eveningand, of course, the many faithful CHSQvolunteers who we sincerely thank forlending a helping hand in the smoothrunning of the organization's activities.We wish long life to Dance for Life andagain salute the dedication of all ourvolunteers who were involved in thisactivity, and don't hesitate to « pass iton» by sharing their talent, their timeand their smiles in service to the healthof Quebecers.Donation campaignWe'd like to take this occasion to thankeveryone who answered the call forour 2009 donation campaign “NEWBLOOD”. As you know, 2009 is goingto be a busy one for the CHSQ. Anumber of activities will be developed,which is why we need to get morefunding to make sure that all theseactivities will be held. We encouragemembers who haven't yet made adonation to do so now so that we canend our year on a positive note andget off to a good start in the new one.Help us help you!
Spotlight on fundraisingopportunitiesThere's no magic recipe for fundraising.But there is a recipe for success: beingable to count on people who are readyto give their time and energy for a causethey hold dear. Choose one of thesemany CHSQ activities or create yourown for 2009!
The troop Sirena brought the exotic rhythms ofMauritania to Quebec.
5
PARENTS’ CORNERA Hemophiliac in my daycare… What do I do?
to play with his friends, hugeveryone, play with blocks…in fact,he did everything that an ordinarytwo-year-old does. However, mylittle ray of sunshine was a bitdifferent: he had hemophilia.When I learned that I was going tohave a boy with hemophilia in mygroup, my first reaction was to getinformation. I immediately checkedout the Internet to getdocumentation, since I admit thatmy level of stress had suddenlyrisen a bit. But I realized that I reallydidn't understand this disease whenthe parents came to talk to us. Ithought that he would bleedeverywhere, that I had to make surehe didn't cut himself, and that herisked bleeding all over the placeat any moment…but I got a surprise.They presented hemophilia to usthe way they experienced it on adaily basis, but not in a way thatwas « frightening». So it was withthis information that, together, westarted what was to be amemorable year, but that hadnothing to do with hemophilia.Surprisingly, I quickly realized thathemophilia was often forgottenduring our daily activities. Therewere a few times when he bled, butnothing major. Plus there was neverany difference felt between theother children in the group and theboy with hemophilia, even thoughhe wore a padded helmet. Theparents were always available toanswer our questions, and I feltsupported in my work with thischild. I'm no longer afraid ofhemophilia, and I wouldn't hesitateto live this same experience again! »
A daycare worker who missesher little ray of sunshine!
***
I hope you enjoyed these stories!I want to wish everyone HappyHolidays and may 2009 be filledwith joy and, of course, health!I invite you to contact me with anyidea about topics for the Parents'Corner or for any commentsabout this topic. I'd be happy toanswer any e-mails:[email protected]. §
Hello everyone! I'll start thiscolumn with a phrase that maymake some of you shiver… winteris here! Yes, I can confirm it afterhaving spent half an hour outsidecleaning off my car and anotherhalf hour getting ready to leave andanother one getting my kidsdressed. I love winter…Enough already about the joys ofthis cold season. Here's the topicof this column: a child withhemophilia in my day care (or inmy class). In every issue of L’Échodu facteur I do what I can to find atopic that could be of interest toyou as the parent of a child withhemophilia. Since I've experiencedthis myself, I'm aware that one ofthe problems parents with childrenwith hemophilia often come upagainst is finding a daycare service.So I invite you to read the followingtestimonies by two daycare workerswho've had a child with hemophiliain their centres. I think these storieswill prove once and for all thathemophilia isn't a handicap (myopinion, of course), but a treatablecondition that can be fairly easy todeal with as long as communicationbetween the daycare worker andparents is good (hemophilia withoutan inhibitor).The first story comes from a daycare worker in a private home inthe Quebec City area, Mrs.Dominique Couture. She welcomedmy son into her daycare everymorning for five years and alwaysdid it with a smile. It was a realblessing to be able to go to work,knowing that my son was in goodhands. I'll let her tell you about it.
***
«I’d like to share the privilegeI had taking care of a little boy withhemophilia. I was lucky to welcomeDylan when he was 1 1/2 monthsold, my youngest baby. Around theage of 6 months, his mother toldme the bad news: Dylan hadhemophilia.I already felt attached to Dylan andI decided to take on the challengewith his parents who wereextraordinary. For his safety, Dylanwore a little padded helmet thatadded to his charm! During thosefive marvellous years that heattended my daycare, I offered hima safe environment adapted to hisneeds and I also told the otherchildren about him. I wanted Dylanto feel just like the others and itwas the group who adapted to him.Of course I admit that in thebeginning, I felt a bit insecure. Eachday, I drew the bruises on Dylanonto a little drawing of a humanand when I changed his diapers, Ichecked the bruises to make sureeverything was normal.I discovered a little man with greatmaturity who learned how tohandle his infusions and was ableto explain hemophilia to the others.Dylan never demanded more timeor energy than the others, just a bitmore vigilance.He left the daycare in Septemberof last year for Kindergarten andI'm glad to have had theopportunity to live this adventure,since he taught me a lot. »
***The second story comes fromanother daycare worker, but in aCentre de la petite enfance (CPE).The lady wants to remainanonymous and I'll respect herwish. A few years ago, she had atwo-year-old boy with severehemophilia in her group. Here isher story.
***
«Let me tell you about the littleray of sunshine who was part ofmy group a while ago! This littleboy, who was two at the time, loved
byLisa-Marie Mathieu
6
VOLUNTEER WEEKEND
Nothing's too good for ourvolunteers
We greeted our generousvolunteers at the Estrimont, Suitesand Spa in Orford, in the EasternTownships, the weekend ofNovember 14-16. There were overthirty people gathered to celebrateall the excellent work that's beenaccomplished over the past year.While there was a festiveatmosphere, we were also there towork and we had a busy andintense schedule.Since I was brand new to yourorganization, I took thisopportunity to join the staffmembers, Genevieve andJoumana, at the registration table.I got a chance to meet everyoneas they arrived and also to chatand get to know some people.We all gathered to enjoy anexcellent meal on Friday eveningduring which our President,Francois Laroche, took theopportunity to thank participantsfor their presence and theirimportant role on the team, andalso to officially introduce me asthe new Executive Director.Saturday was dedicated togovernance, a subject that's notalways easy and sometimes ratherarid, dealing with many aspectsand structures that characterize anorganization. We talked about rulesand regulations, committees,leadership styles and much more.A facilitator from the Centre St-Pierre, Ms. Elise Lemaire, sharedher advice and knowledge with us,without directing us one way oranother or telling us what to do,since all decisions were ours tomake.On Saturday night, the staff hadprepared quite a party! Highlightingthe qualities of each volunteer withan amusing presentation, eachperson was thanked in turn and
was given a token of ourappreciation and also had to givea little speech. The eveningcontinued with an exchange of giftspicked at random, many objectsbeing quite unusual and funny, onlymaking sense once the donorsexplained the reasons for giving it.Sunday was dedicated topresentations given by our partnersfrom the pharmaceuticalcompanies who, one by one,explained in detail theparticularities of their productsspecially designed for people withhemophilia.It was a great weekend filled withwarmth, feeling, complicity andfriendship, the kind that's alwaysgreat to experience again andagain.
Volunteering, what can it bringto my everyday life?
I must honestly admit that, for mypart and according to myconvictions, I'm an unconditionalfan of volunteerism in all possibleforms and places. Without theconstant presence of activevolunteers throughout our society,it would be impossible to assurecollective survival where so manyvulnerable individuals and groupslive and survive.“Volunteer work is an essentiallyvoluntary and unremuneratedaction by people who, either on anindividual or community base,dedicate some of their time to
«improving the quality of life ofothers» (CABQ 1987).” Everyvolunteer action refers to clearlydefined jobs that are connected tosomeone responsible at the heartof the organization.Can each of us in our daily life andenvironment really think that weact alone without the support andsharing of our neighbours? Throughits distinct and united communities,a society is founded on eachperson's intrinsic ability and worthto generate energy from withinitself through networking andcommunity. Strengths, connectionsand organizational structures thatgive every citizen opportunities toget involved and make a difference,no matter their age, beliefs or role.Each year since 1985, onDecember 5, the United Nationshighlights the importance ofvolunteer work around the worldand has declared an InternationalVolunteer Day, highlighting theirworth. We at the CHSQ are proudand more than lucky to be able tocount on a strong team ofvolunteers who are involved in thesuccess of our activities whileparticipating in decisions throughmany committees.To say thank you isn't enoughbecause without your preciouscollaboration, we, the members ofstaff, would feel very alone andwouldn't have the feedback tobetter serve your needs.If you'd like to be part of our team,let us know by calling us or bysending us an e-mail [email protected]. §
Volunteer empowerment, party and pharmaceutical companies presentations
by Danièle CorbeilExecutive-Director
Saturday was
entirely devoted to
a workshop on
governance,
including all
aspects and
structures that
characterize us as
an organisation, led
by Élise Lemaire,
trainer from the
Centre St-Pierre.
7
INHIBITORS’ CORNER
Hello everyone,
I'm very pleased to be able tointroduce this text, which will allowyou to appreciate the courage ofchildren and their families facedwith the small and large challengesof life.
Magalie, a mother of a child withinhibitors, traces the portrait ofsituations that, without everyone'ssupport, would be difficult toovercome.
Ah! Those inhibitors…
The complication of inhibitorsin hemophiliacs has a major impacton their present and future qualityof life. In fact our little man, who'snine years old, has been affectedby inhibitors since he was a baby.They've never been very high, butthey're so stubborn that they're stillpresent and persist despite immunetolerance treatments he's beengetting for almost 5 years.Since there are very few of us inthis situation, I've realized over theyears that the impact of inhibitorson the quality of life ofhemophiliacs is not reallyunderstood, but it's worth takinga closer look at because of its largesocial and financial impact. Forexample, the simple act of goingto daycare and school becomesvery difficult and agonizing stepsfor parents. We need to be betterequipped and need guidance.
Thankfully, school personnel werevery understanding and listenedto us and we didn't have to fightto make them understand thedangers related to hemophilia andinhibitors. Not everyone was thislucky. Along with Dr. Rivard andClaude Meilleur's team, we havean exceptional service with world-renowned caretakers.What's more, recently within theCHSQ, we're feeling a wind ofchange, a desire to act and helpfamilies living with thiscomplication of hemophilia. I alsobelieve that improved services arealso due to the involvement ofpeople living with inhibitors. I'dlike to thank everyone, and inparticular our marvelousDr. Rivard, for his dedication andhis work in the field of inhibitors,along with Claude for her empathy,her kindness and her skills. Godonly knows how many times I'vecalled and this, at all hours of theday. She's always there for us andthis is a great support.Benjamin had almost no bleedsbefore he was five years old, butsince then, he's started havingbleeds in his ankles. The bleedsbecame repetitive, preventing himfrom walking for almost two years.Putting any pressure on themcaused a bleed. Benjamin gotaround by crawling around thehouse and using a wheelchair atschool for over two years. Thefuture wasn't very bright for ourson, until the day that Dr. Rivarddecided to hospitalize him for twomonths in November of 2007, inorder to stop the bleeds and allowhim to get intensive physiotherapytreatments. Dr. Rivard told us atthis point: « I had this experience
by Claude MeilleurNurse Coordinator at theQuebec Reference Centrefor Patients with Inhibitors
30 years ago and the person walkedagain». Not very encouraging, whenyou're told that this interventionwas tried on a single person 30years before! We really felt like wewere different.Having absolute confidence in Dr.Rivard's abilities, Benjamin enteredthe hospital a few days later. Believeit or not, after his intense efforts,his sacrifices and thanks to the careof the whole team (Claude,Dr. Rivard, Nichan and Chantal),Benjamin left the hospital walkingand the inhibitors began todisappear.Since February 2008, Benjamin hascontinued to improve. Our daily lifeis not the same since he's been ableto walk. In fact, just think about it,the simple action of getting up toget a cookie in the cupboard byhimself is a huge step for us.Looking at him standing up,something that hadn't happenedfor over a year, we were surprisedto see how tall he was. Whathappiness!Despite the pain and deprivation,Benjamin was always in good spiritand never said he was sad orfrustrated despite his healthproblems. He's an amazing littleboy! Faced with this disease, heshows great maturity and is anexample of courage andperseverance for us that motivatesus to continue and not give up.I continue to hope that one day he'llclear these troublemakers(inhibitors) so that his life will bemore normal. We promised him « abig party» when he reaches « 0 »and believe me, it'll be a blow out! §
Magalie Rinfret
A MOMENT TO REFLECT
« Great fires are born from little sparks. »
Cardinal de Richelieu
Ah! Those inhibitors…
8
2008 Family weekend for peopleaffected by inhibitorsSix families answered the call for theinhibitors family weekend that tookplace from October 3 to 5 at theEstrimont Suites & Spa in Orford, achance for families affected by thisreality to get together and share a fewmoments of well-earned respite.
Made to measure activities foryoungstersAll weekend the children took part invarious workshops, including a musictherapy session co-animated bySuzanne Douesnard, psychologist, andmusic therapist Nathalie Leduc, bothfrom CHU Sainte-Justine, whereparticipants tried to express differentemotions through words and music.There was also a yoga session led byyoga specialists Maria Garon and Lise-Amélie Roy that allowed them toexplore yoga positions such as the cat,the lion and the cobra.
Sunday was the final day with a highlyappreciated question and answerworkshop with Dr. Georges-ÉtienneRivard, Hemophilia Clinic Director atCHU Sainte-Justine. Saturday eveningthe illusionist, Magislain, managed tocapture the attention of the little ones:the appearance of a dove, a cute littlerabbit and a giant magic wand keptour youngsters enraptured.
Respite for parentsMeanwhile, parents were invited totake part in a session on stress
management using music therapy withSuzanne Douesnard and NathalieLeduc. This was a new experience forthe parents, and opinions were dividedas to the best way to approach the topic,but one also grows through experience.
A yoga workshop led by Marie Garonalso allowed them to acquire certainrelaxation techniques. While our faithfulanimators, Annie de Pauw, AssiaHassaine and Isabelle Vaillancourt, hadconcocted a savoury program to interestthe children during their free time, theadults had a chance to take advantageof a few moments to rest.
Feedback from a participating motherMagalie Rinfret, a CHSQ member,agreed to share her impressions withus: « There were six families, four who'veknown each other for a few years. It'snot many families you might say, butthere are about 10 of us living with thecomplications of inhibitors. This weekendallows us to enjoy some well-earned timeout for parents and wonderful momentsfor sharing between children who get toknow each other better from year to year.The boys are between 7 and 10 years ofage and this year it was easier for themto connect with each other.The children and parents took part indifferent activities and in particular, theywere able to take advantage of the spaand the pool. While we older ones werebusy or else relaxing, the kids were welltaken care of and the animators amusedthem in a safe environment. From oneyear to the next, it's hard to find themesfor workshops since many different topicshave already been dealt with to this point.We take this opportunity to share andrest.This weekend is also and especially forthe children who are older now, andmore curious to understand theirsituation. So for the past two years, asession has been added where thechildren get to ask Dr. Rivard questions,without their parents being there. Theseare very special times for the childrenwhere they can learn more about theirdisease and its consequences.All in all we had a good time and gotsome rest. I'd like to take advantage ofthis opportunity to thank the CHSQ onbehalf of all the families present for havingorganized this activity, one that's alwaysappreciated. Mission accomplished!»
Finally, we'd like to thank all ourpartners without whom this activitywould not be possible, including theFondation Paul A. Fournier, whichoffered a generous donation of $3500.Also, we want to recognize the workdone by the working group for this
CHSQ ACTIVITIES
byJoumana Yahchouchi
Program andFundraisingCoordinator
activity: Magalie Rinfret, CHSQ volunteer,and Claude Meilleur, Nurse-Coordinatorat the Quebec Reference Centre forPatients Affected by Inhibitors at CHUSainte-Justine, who was also present toensure safety on site. The interest ofHélène Néron, Coordinator with theEastern Quebec Regional HemophiliaCentre at l'Hôpital de L'Enfant-Jésus,who attended as an observer, didn't gounnoticed. And we mustn't forget thegenerous cooperation of Dr. Rivard who,along with his sympathetic ear with theyoung ones, insisted on offering his feeas a donation to the CHSQ.
Social activities for families withyoung childrenOn December 7, in the Quebec City areaand in Montreal, social activities forpeople with young children agedbetween 0 and 8 years of age took place.In all, six families took part in a dinnerat Scores followed by an afternoon atthe Olympic pool in Montreal, and inQuebec City, there was a buffet followedby a guided tour of the QuebecAquarium. Thanks go to StéphanieLegault and Isabelle Servais who helpedprepare these activities!Spotlight on upcoming events2009 Calendar of eventsAs you're aware, following the needsstudy that took place in 2008, a numberof new services and activities are on theprogram for next year. Certain ideas foractivities will be reviewed, while otherswill be added to regular programming.As mentioned by Danièle, we'll keep youinformed about the time of each activityso that those who are interested cantake full advantage of these newoccasions for training, sharing andsupport.2009 Family WeekendEnclosed you'll find the registration formfor the family weekend, which will takeplace March 27-29 at the l'AubergeMatawinie in Saint-Michel-des-Saints.Please complete it and return it to ouroffices before February 16, 2009, alongwith your duly completed membershiprenewal (one form per registeredmember). We would like to thank thegenerosity of ING Foundation, which hasmade a donation of $ 1 500 for thisactivity and sincerely hope that this firstcollaboration will be renewed in thefuture.The rates for the family weekend are thesame as last year: $55 per adult, $30for each child under 18, and $125 forfriends of children with hemophilia.Don't forget, places are limited and it'simperative that you send in your formsbefore the deadline! §
Dr. Rivard in a workshop where many questionsfrom the youngsters were answered.
9
The vibrant story of a youngTunisianWe managed to get a young man,Issaoui Montassar, who attended thepresentation in Tunis, to talk to us. “Tobegin with, I'm going to explain thatNovember 6, 2008 is important to meas a new start in life… I met newpeople, especially David and Joumana,who I consider not only friends, but asecond family. This experience wasvery important because it changed thecourse of my life in a good sense. Thisyoung man, David, full of life, gave meback my confidence, all the whileignoring our differences. I also learnedfrom beautiful Joumana how toovercome obstacles in life withoutgiving up, and I remember her most
richness of sharing worked both ways: thepassion of our Tunisian friends'involvement represents a real source ofinspiration in the daily work of the CHSQin our part of the world! §
important piece of advice, whichwas to explain this disease to oursociety and help people understandwithout prejudice. What's more,I consider Mr. François was rightwhen he said that « withoutcourage and daring we'll alwaysbe last » and that « falling isn't theproblem: the problem is if you staydown ». Finally, I want to thankyou for this great experience andfor having given me the chance towrite these words in yournewsletter.” Thanks for thesetouching words from Issaoui, whowe hope will keep up his courage!And to end, the Quebec delegationwants to mention the warmwelcome we were given by allmembers of ATH. This made ourstay as pleasant as it wasproductive. No need to say that the
For two years now, education dayshave been held at the CHU Sainte-Justine Hemostasis Centre. The goalis to improve the basic knowledge ofour severe hemophilia teens, to givethem tools to make enlighteneddecisions about physical activities, tosupport them in accepting theirdisease as well as facilitating theirintegration into society and theirtransition to independence.The idea for organizing this type ofday came about from clinicalobservations and major gaps in ouryoung people's knowledge: lack ofbasic knowledge about hemophiliaand their own medical condition; amarked lack in motivation andadherence to the treatment plan andfollow-up proposed by themultidisciplinary team; inappropriatechoice of sporting activities; lack ofperseverance doing the exercisesrecommended by the physiotherapist;difficulty with social and personalrelationships and with employers;difficulty becoming autonomous andaccepting recommendations from thetreatment team.Teens are invited to participate inthese education days during their
NURSES’ CORNEREducation Days for Teens with Severe Hemophilia at the CHU Sainte-Justine
by Claudine AmesseNurse Coordinator at theCHU Sainte-JustineHemophilia Treatment Centre
annual visit. The professionalsinvolved are Dr. Rivard, psychologistSuzanne Douesnard, social workerYolaine Houle, physiotherapist NichanZourikian and I, Claudine Amesse,nurse coordinator.Here's the model for these days:individual meetings are held with eachprofessional listed above whoevaluates, according to theirrespective fields, each young person.From 10:30 to 1:00 pm, the youngpeople attend an education workshoptogether and discussions arefacilitated separately by eachprofessional.The nurse explains how to calculatethe level of factor in the bloodaccording to the dose infused and thelapse of time since the last infusion.She also teaches them how to adjustthe number of units to be infusedaccording to the degree of severity ofthe bleed or injury and this, dependingon the delay since the last infusion.They learn to adapt these notions totheir type of hemophilia and theirrespective weights. They fill in amagnetic board that already containsbasic information with their personalvalues and are invited to keep this asa reminder on the family fridge. Usinga visual presentation, thephysiotherapist shows what happensto a joint when it has a bleed. Heexplains the importance of resting thejoint for a certain amount of time and
then following a program ofprogressive exercises.The teens share a delicious andhealthy lunch with the professionals,allowing for discussions in a relaxedatmosphere. This lets them get toknow other teens living with a similarsituation.The social worker and psychologistthen meet with the young people toallow them to express their thoughtson various aspects of their social andfamily life in relation to theirhemophilia.Questionnaires are distributed to theyoung people at the start in order toevaluate their actual need foreducation, and then what they'velearned after the workshops are over.Results from these questionnairesconfirm initial clinical impressions,that there's little understanding ontheir part about their disease and theirtreatment, despite the time spentteaching by parents and health careprofessionals. We conclude that aspecific educational programaddressing teens must be part of everypediatric treatment centre in order toensure the transition to adult care andall the skills needed for efficient self-infusion and safety.I hope I've managed to describe themain points of this program that wefeel important since it appears to meeta real need with our young severehemophiliacs. §
INTERNATIONAL TWINNING WITH TUNISIA (cont’d)
> page one cont’d
Young hemophiliacs from Southern Tunisia.
10
FOCUS ON HEPATITIS C
five days raised a level ofcirculating interferon up to 4.2+/-0.5 log2 u/ml (P <0.05) against2.0+/-0.3 log2 u/ml of the controls.Interferons are the body's switchesthat help cells resist viral infectionand provide the initial, crucialresponse to immune challenges.
The American-made product is thecontemporary adaptation of theSoviet research. It was introducedin the U.S. by a retired Coloradopharmacist when he observed thelactobacillus lysate's effect ofeliminating his daughter's HepatitisC symptoms. The product is nowmanufactured in the U.S. byVivolac Laboratories ofIndianapolis, Ind.
Read more at:http://news.prnewswire.com/DisplayReleaseContent.aspx?ACCT=104&STORY=/www/story/11-18-2008/0004927808&EDATE=
Results Of Human SafetyStudy For Hepatitis-CPatients Treated With TheAethlon Hemopurifier®October 16, 2008
Aethlon Medical, Inc. announcedthe completion of a human safetystudy. The primary objective ofthe study was to evaluate thesafety of the AethlonHemopurifier® in healthcompromised end-stage renaldisease (ESRD) patients thatrequire kidney dialysis.
The Hemopurifier® is a first-in-class medical device that assiststhe immune response incombating infectious diseasethrough real-time therapeuticfiltration of infectious viruses andimmunosuppressive proteins.
In addition to demonstratingsafety, the study provided theopportunity to observe changesin viral load in ESRD patientsinfected with Hepatitis-C virus(HCV).
Read more atwww.medilexicon.com/medicalnews.php?newsid=125615
Protein Signature MayPredict Who Responds ToHepatitis C TreatmentNovember 3, 2008
A tell-tale set of newly-identifiedproteins may be able to predict
who will most likely respond tostandard therapy for Hepatitis Cinfection, say researchers in theDuke Clinical Research Institute.It is a development that could helppatients facing one of the mosttaxing therapeutic regimens inmedicine.
Duke scientists discovered threefactors representing clusters ofproteins or peptides that canpredict in nine cases out of tenwho will respond to therapy andwho will not. "This is just a firststep," says Moseley, who isdirector of the proteomicslaboratory in the Duke Institutefor Genome Science & Policy. "Westill have to figure out whichprotein pathways these clustersare associated with.
That, in turn, may yieldinformation that could lead to newtreatment options or moreinformed treatment decisionsusing current therapies.We haveneeded something like this for along, long, time," says Keyur Patel,M.D., the lead author of the studyand a member of the DCRI. "Weare now validating our initialfindings in a second set of 30serum samples from the samebiorepository. We are hoping touse these protein signatures in aclinical trial within a year or so."
Read more at:www.emaxhealth.com/2/39/26103/protein-signature-may-predict-who-responds-hepatitis-c-treatment.html
Study Shows Soviet-EraDietary Supplement BoostsImmune ActivityNovember 18, 2008
A recent study on an American-made, Soviet-developed immuneformula shows the product has asignificant effect on immunefunction.
Among other findings, the studydemonstrated that dailyadministration of Del-ImmuneV(R), a dietary supplement, within
News in Brief
by Michel LongCHS HIV/HCV ProgramCoordinator
The Focus on Hepatitis C
column has been made possible
thanks to the financial
contribution of
Schering Canada.
11
byDavid Pouliot
YOUTH ECHO
National YouthCommittee
It was a pleasure to take part inthe National Youth Committeemeeting and to see themotivation that exists in youngpeople living with bleedingdisorders.
The weekend included theelaboration of an action plan toreach even more youth andencourage them to find outabout the Canadian HemophiliaSociety and their chapters andeventually become activemembers.
With this in mind, there'll soonbe a twinning program betweenyouth and adults to help sharethis knowledge and give a goodbase to newcomers.
So I'd like to call upon all youngpeople who have questions orwho are interested in taking partin youth activities tocommunicate with the youngpeople involved in the QuebecChapter who appear on thispage of L'Écho du facteur.
I hope to see you soon! §
Martin Kulczyk
I was amongst those lucky enoughto travel to Tunisia at the beginningof November. My presence wasdue to the fact that I was invitedto make a presentation for younghemophiliacs in that country aboutthe activities that youth groupsorganize in Quebec and in Canada.
François and I got to make twopresentations in both Tunis andSfax. These are the two largestcities in the country, both locatednear the Mediterranean Sea, Tunisin the north and Sfax, which iscentrally located. François'presentation dealt with theevolution of care and ourorganization.
The Association tunisienne deshémophiles (ATH) is an
organization that's making greatstrides with incredibledetermination. While we createdour youth group just barely fouryears ago, ATH is already lookingto create its own group.Everywhere we went, both youngand old alike were eager to listento us and showed us great respect.I was very touched by how pleasedthey were to meet us.
Accessibility to care, problems withtransportation and taboo subjectsare some of the many obstaclesthat Tunisian hemophiliacs willhave to deal with, and are prioritiesfor the youth group and futureleaders. It's to their credit that ATHalready recognizes thisimportance. To continue the fightfor this cause, young people mustalso get involved. I raise my hat toATH for being avant-garde.
The purpose of my visit wasn't tostart up a youth group while I wasthere, but just to plant the seed ofthis idea. I hope to be able tocontinue this dialogue with mynew Tunisian friends and, one day,to have the honour of includingthe Quebec Youth Group in atwinning with the Tunisian YouthGroup. §
Impressions from my Trip to Tunisia
WINNERS OF THE 2008 SCHOLARSHIPS
As part of our Scholarship Program,the two candidates chosen toreceive scholarships in 2008 for theamount of $1250 each are PatrickSyriani and Anne-Julie RobitaillePatrick is presently registered at theHautes Etudes Commerciales (HEC)and is completing a degree inBusiness Administration,specializing in Market Economics.According to him: « Joining theCHSQ has allowed me to take bettercare of myself, become independent,responsible and disciplined. The pastfew years I've gotten involved in thehemophilia community and I've
benefited in a number of ways,amongst which is having had theopportunity to participate in aninternational leadership program.»
As for Anne-Julie, she studies at theCEGEP Lionel-Groulx in Humanitiesand Administration.« Thanks to all the conferences thatthe CHSQ offers, either about gettinginvolved or leadership, I've been ableto realize that in life you have to getinvolved in everything that'simportant to you. Since I reallywanted to get involved, I planned aproject that allowed me to get toknow the CHSQ: an auction. Thanksto the CHSQ, I'm more open towhat's happening around me andto what's happening in the world. »Congratulations to our tworecipients! §
F.L.
Patrick Syriani
Anne-Julie Robitaille
The publication of this newsletter has been madepossible thanks to the financial contribution of these
pharmaceutical companies:
significant contribution to thedevelopment of specific projects withinthe organization.• Honorary MemberThis award is presented to an individualwho is not a member of the CHSQ butwho has made a significant contributionto the goals of the organization.• Lifetime MemberThis award is the highest category ofChapter Award presented to a CHSQvolunteer to recognize an exceptionalcontribution and devotion to thedevelopment of the organization overmany years.
You are invited to propose the name ofa candidate who, in your opinion, hasstood out for his or her exceptionalinvolvement for each of the awardcategories. The deadline for submittingnominations is February 25, 2009.
F.L.
Call for Candidates for a Positionon the CHSQ Board of DirectorsOn March 28, the members of the CHSQ2009 Board of Directors will be electedduring the Annual General Meeting. Weare looking for people with knowledgeand skills who wish to get more activelyinvolved at the heart of theorganisation's decisions.
You'll find the call for nominations formincluded in this mailing to be completed
IN A WORDMembership RenewalThe time has come once again to renewyour CHSQ membership. There is nolonger a fee required to renew yourmembership or to become a newmember of the organization. However,a contribution for an amount left toyour discretion would be greatlyappreciated.
It's important that you return thecompleted form included in this issueof l'Echo du facteur as soon as possible.Don't forget that under allcircumstances, there's strength innumbers.
D.C.Nominations for the 2008CHSQ AwardsThe following awards can be presentedby the CHSQ to people who have beenoutstanding volunteers during the year2008 or over a longer period of time:
• Volunteer of the YearThis award is presented to a volunteermember of the bleeding disorderscommunity who has made a particularcontribution to the mission and variousmandates of the CHSQ during the pastyear.• Award of AppreciationThis award is presented to an individual,whether or not the person is a memberof the CHSQ, who has made a
by those interested in this opportunity.Also, if you know anyone who hasexpertise that can help the CHSQ, butwho doesn't have a direct familyconnection to someone with a bleedingdisorder or someone living with theconsequences of a contaminated bloodtransfusion, his/her nomination can beput forward (please inform them aboutyour action) and this person can ask tobecome a member of the CHSQ as asupport member. The Board of Directorswill judge the pertinence of his/hernomination and may offer him/herstatus as a support member.
For more information about theresponsibilities and work of the Boardof Directors, please contact the office.Nomination forms must be received,accompanied by the requireddocuments, no later than noon onMarch 25, 2009.
F.L.
Humate P® can now be stored atroom temperatureCSL Behring, the manufacturer ofHumate P®, a combined factor VIII andvon Willebrand factor product,announced at the beginning ofDecember 2008 that the product cannow be stored at room temperature. Infact, data on the stability supplied byCSL Behring allowed Health Canada tolicense Humate P for storage at atemperature between 2° C and 25° C.
These new storage conditions apply toproduct presently in Héma-Québec'sinventory, in hospitals and in patients'homes, as well as to new Humate P lotsto come. This will make managementand transport of this product easier.
The company says that changes to thestorage temperature will be indicatedon the product monograph and on thebox as early as spring 2009. §
F.L.
