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SUMMER 2006VOLUME 14, NUMBER 2
As I mentioned in my article'My Experience with the WorldCommunity' (See page 10), I wasamong the lucky ones who got totake part in the pre-congress andthe World Congress. I also say inthe article that I met a lot of peoplefrom different countries, and manyof these were part of internationalyouth!While talking with all these greatpeople, I learned that youth arebecoming an important part ofassociations or societies. One ofthe best examples of this isAustralia with a solid committeededicated only to youth. You canvisit their website to see foryourself: www.haemophilia.org.au/.
In Canada, certain chapters, likeours, have a group or committee,but recently, meaning during theCHS board meeting that took placethe weekend following thecongress, the project for a NationalYouth Committee was approved.Here's what was said: eachprovince will need delegates forthis committee (age: between 16and 25) and, specifically forQuebec, this means that we canhave up to 3 delegates from ourprovince. More details will beforthcoming.My biggest surprise during thecongress came from the Danishinitiative for an internationalwebsite for youth. The address is:www.los-bleedos.net.You can read articles speciallywritten for youth around the wholeworld by other youth on thisprofessional and inviting site, andit's also possible to participate ina discussion forum. To have accessto the second option, you have toregister (it's fast and easy). I highly
suggest you check it out, and what'smore, by doing this, you becomeeligible for a contest where you canwin a Playstation and otherinteresting items. It goes withoutsaying that I've already registeredand you can find pictures from mytrip on the site! Congratulations tothe Danes.I've reserved this paragraph to tellyou that these two weeks spent inVancouver are among two of thebest weeks of my life. This was achance for me to make friends withyoung people my age from acrossCanada, the United Kingdom,Australia, Austria, Columbia,Denmark, Spain, the United States,India, Indonesia, Lithonia, Malaysia,New Zealand, Peru, Sweden, andI've probably forgotten some. Myevenings were spent in goodcompany!I hope that this has encouraged youto get involved in the CHSQ byseeing that there are also rewardsto volunteer work. §
byDavid Pouliot
Here's the conferencecentre in Vancouver,Canada Place. Thereflection of lights on thebay and the well litcongress centre, with itsroof imitating fourbrightly coloured sails,form a beautifulforeground for thenight sky.
Hard to keep a grouplike this from moving
during a photosession. But you can
still get an idea of thenumber of young
people present duringthe pre-congress.
International YouthYOUTH ECHO
A WORD FROM THEEDITOR
A large part of this issue is devotedto the XXVIIth WFH InternationalCongress held last May in Vancouver.Because this Congress was held herein Canada, the CHS and the CHSQ sentmore delegates than usual. You canread some of their impressions inthese pages.I'm one of those who attended thiswide-ranging international event, andI came back more knowledgeable,with new and renewed friendshipsand with great memories.I was interested in sessions touchingon a number of aspects of hemophiliaissues including medical,musculoskeletal, ethical,multidisciplinary, international, etc…I'd like to take advantage of thiscolumn to quickly share a few of thecomments made during conferencesthat most impressed me.There are over 800 different mutationsof the factor VIII gene and over 2300in factor IX.New treatments are being tried allover the planet. However, the safety
of patients is of primary importance.Children should not be the first toexperiment a new treatment.A factor VIII with a prolonged half-lifewill soon be available. Thanks to thisproduct, prophylactic treatment willrequire fewer infusions (once a weekinstead of 3 or 4) with the sameeffectiveness.Prophylaxis is essential to maintaininggood healthy joints. Bleeds must beavoided at all costs. For example, threeor more bleeds into the same jointwithin six months are sufficient tocause damage to cartilage and initiatesynovitis.The approach to treatment for peoplewith bleeding disorders must becentered on the patient himself insteadof on the doctor. At the same time,more than ever, the participation of amulti-disciplinary team should be thenorm for a treatment plan adapted tothe patient.It's known that 80% of people withhemophilia don't have access toadequate treatment. What's more, only40% of factor concentrates areconsumed in developing countrieswhose population represents a muchlarger percentage than that ofindustrialized countries.To help fill this gap, Canada hasproposed a project to recuperate thefactor VIII and IX proteins from plasmadonated by Canadians that is not beingused at present. Efficient coagulationproducts could be manufactured at lowcost. The project is progressing welland other countries have joined in. §
SUMMARY
EDITORIALSTAFFEditor:François LarocheContributors:Claudine AmesseSuzanne ChampouxMylene D'FanaNathalie MartelRoxanne NadeauDavid PouliotFrancis RheaultMax RoujeonChantal RoyPatricia StewartCatherine van NesteProofreaders:Aline OstrowskiPatricia StewartPage layout:François LarocheTranslation:Patricia Stewart
2
Youth Echo 1A Word from the Editor 2Editorial 3Fundraising 4CHSQ Activities 5Parents’ CornerWe Have Been InfusingOur Son since He Was7 1/2 Months Old 6 & 7Nurses’ CornerQuebec Nurses Participatein the XXVIIth WFHInternational Congress 7 & 8Focus on Hepatitis CA constant state of fatigue
XXVII InternationalCongress of the WFH:Hemophilia 2006 —VancouverImpressions of a FewParticipants 10 & 11Highlights 12
byFrançois Laroche
Upcoming EventsPrograms
August 6-11 CHSQ Summer Camp, St-Raymond-de-PortneufAugust 11-12 CHS HIV-T & HCV-T Pre-congress, TorontoAugust 13-18 International AIDS Conference, TorontoSeptember 15 CHSQ Scholarship application deadlineSept.29-Oct.1 Just the Guys Weekend, L'Avenir, QuebecFall Social outing for parents and children from newborn to
6 years of age, Montreal & Quebec CityMay 2007 CHS Medical Symposium & AGM, Quebec City
Fundraing
July 15-16 National Fundraising Committee meetingNovember 4 “FIESTA SALSERA” Benefit event for all, Musée Juste
pour rire, MontrealNov. & Dec. Colouring book campaign
• L’Écho du facteur is a quarterly newsletterproduced by the Quebec Chapter of theCanadian Hemophilia Society and isdistributed to its members.Circulation: 300 in French, 115 in EnglishLegal deposit: Bibliothèque nationale duQuébec, 2006
EDITORIAL
management, quality of life researchand other bleeding disorders such asVWD and family issues. We alwayslearned new things but thepresentation that really touched methe most was not a medical one; itwas a multidisciplinary one dealingwith family dynamics. I could relateto the speaker, a mother and carrierof hemophilia, and it made me thinkof how I had confronted things whenI found out that I was not a carrierand my son's hemophilia was amutation. It brought tears to my eyesand I can truthfully say I was notalone. You could see how thispresentation touched not onlymothers, but also others in the room.In this issue of L’Écho du facteur andothers to come you'll be able to readsummaries of some of the sessions.As with every congress, nurses fromthe host country work at thetreatment centre to care forhemophiliacs from around the world. For the first time, a physiotherapyroom was also included. I would liketo thank our nurses andphysiotherapists from Quebec whotook part in this care. Along with theother nurses and physiotherapistsfrom across Canada, they made surethere were no referrals to theemergency room.This five-day meeting once againshows Canada as one of the leadingcountries in the treatment ofhemophilia. As we danced the nightaway during the closing ceremonies,we all looked forward to he nextWorld Congress that will take placein Istanbul, Turkey from June 1- 5,2008. During the WFH GeneralAssembly, Argentina was elected to
While the World Federation ofHemophilia hosted the WorldCongress of Hemophilia in Montrealin 2000, this year was differentbecause the Canadian HemophiliaSociety was the host of thisinternational event this time. It wasalso located on the west coast ofCanada, in Vancouver. It all tookplace the week of the 21st to the25th of May, followed by the CHSBoard of Directors meeting and theAnnual General Meeting.Over 4000 delegates from 110countries filled the VancouverConvention and Exhibition Centerin downtown Vancouver. Thevenue overlooked Burrard Inlet andGrouse Mountain and was withinwalking distance of most hotels.Right from the opening ceremonieswhere Dr. Georges-Etienne Rivard,as Congress President, had to playthe drums with the Smoky ValleyDrum Group and where David Pagewas named Mr. Hemophilia, everysession was well attended.There wasn't a moment duringbreaks that I didn't spend timenetworking with people from othercountries. Some of them were oldfaces that I had met in the past,others I was meeting for the firsttime.The sessions ranged frominhibitors, prophylaxis, pain
host the 2010 World Congress ofHemophilia.Now back to the CHSQ. On May 30,Michelle Sulllivan's contract endedas Interim Executive Director. Forthe next few months the ExecutiveCommittee will work closely withkey volunteers and GenevieveBeauregard, our AdministrativeAssistant, until Aline Ostrowskireturns from maternity leave.Max Roujeon, the consultant hiredfollowing the departure of ourfundraising coordinator, is workingto develop the colouring bookcampaign. The CHS FundraisingCouncil is considering using thisfundraiser at the National level aswell.At the CHS Board of Directorsmeeting new Mission, Vision, andthe Strategic Directions wereapproved. All this was presented tothe Board after consultation withthe CHS Communication Task Force,following the work done at thestrategic planning session lastFebruary.We still haven't received an answerfrom the MSSSQ concerningfunding for this year. A final answeris expected soon.On June 2 the CHSQ was invited toattend the meeting of theHemophilia Clinic Directors. Wepresented a brief description of pastactivities and those to come. I wouldlike to thank them all for theircollaboration and presence duringour activities.And finally, I would like to wish youall a great summer! §
3
A WORD FROM THE PRESIDENT
byMylene D’Fana
4
FUNDRAISING
Past EventsFundraiser at McDonald'sRestaurantsOne of our volunteers, Chantal Roy,Volunteer of the Year in 2005, andit's easy to see why, convinced 38McDonald's restaurants in theQuebec City area to participate in aWorld Hemophilia Day (April 17)fundraiser by giving the moneygathered during the week of April10 to 17 from donation boxes locatedbeside the cash registers to theCHSQ.Thanks to this initiative, the CHSQnow has $3500 in unexpectedfunding that will help us withactivities.Thank you, Chantal, for thisinitiative!Radio-Lounge SoiréeLast March 29, as part of theirMercredis Star d'un soir program,where a celebrity takes control ofthe bar to serve clients, the actor,Martin Laroche, chose the CHSQ ashis charity during a benefit eveningat the Radio-Lounge bar in Montreal.5% of sales are given to the non-profit organisation chosen by thecelebrity.Thanks to Martin, the Radio-Loungedonated $350 to us. Thanks go toMartin Laroche and to the Radio-Lounge.Bowl-a-ThonOn April 30 and May 6, the SecondCHSQ Bowl-a-Thon took place inMontreal and Quebec City,respectively.
A slight drop in participation in bothregions didn't stop young and oldfrom enjoying a day of fun andlaughter.A grand total of $7825 wascollected, thanks in particular to the150% increase in sums over last yeargathered in the Quebec City area.This was due to a large number ofpledges and donations raised bysome of the participants, withencouragement from the localorganisers.Thanks very much to the participantsand volunteers who made this eventa success once again this year.Upcoming EventsFiesta Salsera EveningReserve Saturday, November 4 onyour calendar right away for the bigFIESTA SALSERA.
Come and watch Genny andChristopher, and other danceprofessionals, perform to Latinrhythms at the Just for LaughsStudio…Yes, our administrative assistant,Geneviève Beauregard, has offeredher talents to the CHSQ and isorganising a benefit evening… andno, even though the location is theJust for Laughs Museum, it's not ajoke.A family evening with a show, music,dancing and partying awaits us.For more information, please contactthe CHSQ office and talk to Gennyabout this upcoming event.Tickets will be on sale soon, andinvitations will be going out later thissummer. §
The actor Martin Laroche chosethe CHSQ as the charitableorganisation for the Mercredi Stard'un soir program at the Radio-Lounge bar in Montreal.
Thanks to an initiative by Chantal Roy (centre), the CHSQ wasgiven a cheque for $3500 representing donations gathered at 38McDonald's restaurants in the Quebec City area during theweek of April 10-17, 2006. She's seen here with Guy Dionne (onthe right), owner of three McDonald's franchises in QuebecCity, and François Laroche (on the left), CHSQ Vice-president.
I got a parcel yesterday for filling out a survey. It contained amug with this saying on one side: “Different is not always betterbut better is always different”. On the other side it simply says“Share!” I believe teamwork is the way to get things done, soI'd like to share what's happening with the colouring bookcampaign with you.My name is Max Roujeon and I work for the CHSQ on thecolouring book campaign. Because there are more and moregroups looking for funding, and a lot of cutbacks to governmentgrants, we must find new ways of raising funds, we must bedifferent and better.Being from the publishing world, I loved the quality of thecolouring book when I saw it, plus the fact that the authors arewell known. I said to myself, “This may be a way to differentiate
ourselves from the others. It sells well and if we give itmore power it will sell better”.Most sponsors give based on the return they get on theirinvestment. Companies want visibility, and if visibilityincreases, then the value of the sponsorship increases andwe can expect more money.By giving the book added value, by offering our sponsorsthe opportunity to include rebate coupons for their productsin the book, we hope to motivate our sponsors into puttingmore money into the book. This will help us find new typesof sponsors. Presently, we're soliciting the retail network(Metro and Sears).We hope they will sell the book through their retail networkusing free space in their weekly flyers. That way, we'll sellmore books, the circulation will increase, and so willvisibility and the value of sponsorship. Customers buyingthe book will find it less costly, thanks to the coupons.Please call me any time you wish. I'd be happy to talk withyou.
by Max RoujeonFundraising Consultant
THE COLOURING BOOK CAMPAIGN
5
CSHQ ACTIVITIES
existence of this hereditary problemby explaining the most commonsymptoms. People can then getdiagnosed and properly treated.
If anyone is willing to learn how touse the presentation kit, developedby the CHS thanks to funding fromZLB Behring, to help spread theword about this bleeding problem,please contact the office. We canarrange a training session.
Youth Outing — June 16
On Friday, June 16, the secondCHSQ activity for youth took place.
In all, 11 young people from 16 to25 years of age, including 7hemophiliacs, spent the eveningtogether starting with supper at theCage aux Sports restaurant at theBell Centre, followed by a footballgame. The Montreal Alouettesfaced off against the Winnipeg BlueBombers.
Even if they hadn't won, theevening would still have been asuccess for everyone, but theplayers from the Montreal teamdidn't let victory slip from theirgrasp for this, the first match of theseason.Final score: 27 to 17 for Montreal.
D.P.
CHS - Inhibitors FamilyWeekend — April 28-30A number of families living withinhibitors in Quebec attended thefamily weekend organized by theCHS - National. Families fromacross the country met in Montrealto attend workshops, shareexperiences and spend timetogether with other families livingwith this serious complication ofhemophilia.
The kids visited the ScienceMuseum in the Old Port, andeveryone danced late into theevening on Saturday.
This weekend is to become abiennial event at the National level.Quebec will continue to organiseactivities for its members livingwith inhibitors during alternateyears as well as offering continuingservices to them.
We'd particularly like to thank Ericaand Sandra Syriani for giving uptheir weekend to help take care ofthe youngest children.
27 youngsters will be heading outfor a week of fun and adventure,greeting old friends and makingnew ones.
Look for more about camp in thenext issue of L’Écho du facteur.
Just the Guys Weekend —September 29 - October 1
As part of an activity developed inthe CHS Step-by-Step program, incollaboration with Bayer, fathersand their sons living with a bleedingdisorder from 6 to 17 years of agewill get the chance to spend a fewdays of quality time together andhave some fun.
You can get more information fromthe registration form included inthis mailing. Contact the office assoon as possible because placesare limited.
CHSQ Scholarships —September 15
Once again this year, the CHSQ, incollaboration with Bayer, Baxter,Novo Nordisk and ZLB Behring willbe offering four scholarships tostudents who have a bleedingdisorder and who are registered atthe collegial or university level, orat a trade school.
For more information about thesescholarships, contact the office andyou'll receive a form to completeand return, along with pertinentdocuments.
The deadline for applications isSeptember 15, 2006.
Winners will be announced in earlyOctober.
CHSQ Web Site
The new CHSQ web site is nowonline. Go to www.hemophilia.caand then go to Provincial Chaptersto find the Quebec website. You'llfind all the latest information aboutour organisation. The front page isworth checking out!
A new registration process is soonto be in place whereby you can getan e-mail letting you know whenanything new is put on the CHS site.
If you haven't already looked at thissite, it's well worth your time. §
Summer Camp — August 6-11
Kids from 6 to 15 years of age arelooking forward to the CHSQsummer camp that will take placeonce again this year inSt-Raymond-de-Portneuf.
The Youth activity was a success once again thisyear with 11 youth taking part…and a win bythe Alouettes to top it off!
byPatricia Stewart
VWD presentations — May 2006Six different presentations on vonWillebrand Disease took placeduring the month of May inBellechasse before a number ofwomen's groups.
The purpose of these presentationsis to make people aware of the
PARENTS’ CORNER
6
We’ve Been Infusing our Son since He Was 7 1/2 Months Oldroom at the Hôtel-Dieud'Arthabaska and they transferredus to pediatrics, where we metRoxanne Nadeau. For those whodon't know her, she's a nurse andthe mother of two boys withhemophilia. So it was veryreassuring to know that our sonwas in good hands!
Following this first joint bleed, Dr.Georges-Étienne Rivard decided tostart Dilan on prophylaxis. Wedidn't think it was going to happenso quickly. It frightened me to knowthat I'd soon have to infuse mychild, but I saw that it wasn't allthat bad. I think that when youdon't have a choice, you find theinner strength that helps you getthrough things. All I wanted wasfor Dilan to be well, so I had toovercome my fears.The staff takes great care of us:they take the time to answer ourquestions and offer usdocumentation and, especially,support. Since we live in anoutlying area and we don't have atreatment centre near us, Ste-Justine's Hospital offered us thetelemetry service. This tool allowsus to communicate by Internet withour nurse. We can see and heareach other; it's as if we're in thesame room!Beginning on January 12, wetraveled once a week to Sainte-Justine for an infusion. During thistime, our nurse, Claudine Amesse,taught us. Francis and I began bywatching Claudine do it, and thenext week, we practiced on aplastic arm, then on each otherboth at the hospital and at home.We practiced twice a week. Thefact that Dilan is a chubby babywas a challenge and, at that age,it's not easy to find a good vein andespecially to keep him immobile.
On February 24, after 5 visits, thegreat day arrived when Francisinfused Dilan for the first time. Thenext week it was my turn. I wasreally happy to have overcome myfears because infusing my husbandand infusing my son were twocompletely different things. I wasteary-eyed because I was so proud
Recently I was looking throughan article that suggested books forparents. With the holidaysapproaching, if you're planning atrip, the book called Voyager avecdes enfants could be very helpful.The authors, Lio Kiefer and IsabelleChagnon, have thought ofeverything: getting ready to leave,choosing a destination, hotels,transportation…everything to helpyou get ready to travel with yourkids! (Editions Ulysse, 2005). Butmost important of all, don't forgetto let your treatment centre knowyour destination; your nurse cangive you a list of all the treatmentcentres that will be on youritinerary as well as their phonenumbers.From September 29 to October 1the first Just the Guys weekendorganized by the CHSQ will takeplace. This activity is part of theStep-by-Step program launched bythe CHS - National. The purpose ofthis weekend is to give fathers ofboys with hemophilia or vonWillebrand Disease the chance tospend a weekend together.It will take place at the EquusResort, located in L'Avenir, for allboys from 6 to 17 years of age,accompanied by their fathers.It's a great chance for mothers tospend time with their other childrenwho, and let's not pretend this isn'ttrue, often feel left out or evenjealous of their brother who has ableeding disorder.If you have any questions or if youwant to register, contact GenevièveBeauregard at the CHSQ office rightaway, or fill in the registration formyou'll find with this issue.
I'd like to take this opportunity toremind you that if you have anyideas for fundraising or if you'd liketo share your story with us, contactGeneviève or me.The following story is that of ayoung couple that I met atMatawinie in March. During theparents' workshops during theweekend, couples living far fromtreatment centres often tell us thatthey have had to learn very earlyon how to do infusions due to thedistance that separates them fromthe treatment centres. Nathalie andFrancis are no exception and theylearned how to infuse their sonDilan, at very young age.I'd also like to thank them forcoming from Victoriaville to joinus for bowling in Quebec City lastMay 6th. They even solicited peoplearound them to gather donationsfor the CHSQ. Thanks very muchfor getting involved!Happy summer to all!
We’ve Been InfusingOur Son since He Was
7 1/2 Months Old
We're a family from Victoriavilleliving with a young hemophiliacchild. My name is Nathalie and myhusband is Francis.In November 2005 we learned thatour first son, Dilan, 4 1/2 monthsold at the time, had severehemophilia A. It was a totalsurprise, since no one in our familyhad this disease! We weresaddened and frightened becausewe really didn't know anythingabout the disease.Following the diagnosis, we werereferred to the treatment centre atSte-Justine's Hospital, in order toget information about treatment.Right from the first meeting, wewere told that we would be learningto infuse our son ourselves as soonas possible.Two months after the diagnosis,during the night of January 1, Dilanhad his first joint bleed into his rightelbow. We went to the emergency
byChantal Roy
PARENTS’ CORNER (cont’d)
7
that we were both able to infusehim so quickly. Dilan was only 71/2 months old, and I didn't thinkI'd be infusing him before he wasa year old, but I guess anything ispossible when you have confidencein yourself and are well supported!Claudine constantly encouragedus and motivated us; she believedin us!Since April 12, we infuse Dilan athome. During the first three weeks,we had a nurse from the CLSCcome to our house and superviseus, helping us immobilize Dilan.Now, we do it without help and it'sgoing well.However, if we need it, we can godirectly to pediatrics at the Hôpitalde Victoriaville where a nurse willgive us a hand to do the infusion.
It's great not having to travel toMontreal and wait for his injectionevery week. The infusion takes afew minutes and then he can getback to playing!When we attended the familyweekend organized by the CHSQ,we realized how important it is tomeet other parents of children withhemophilia. During discussions, werealized that we weren't the onlyones living with this disease. Thiswas a great comfort to us since, aseveryone knows, the first monthsare extremely difficult.Dilan's hemophilia has helped usto grow and allowed us to realizehow important the support of familyand friends really is. Now we liveday to day and appreciate everyminute. §
Nathalie, Francis and Dilan
Quebec Nurses Participate in theXXVIIth WFH International Congress
NURSES’ CORNER
Nurses from the QuebecHemophilia Treatment Centres(HTC) had the privilege of attendingthe XXVIIth WFH InternationalCongress from May 21-25 inVancouver.On Sunday, May 21, prior to theofficial congress openingceremonies, hemophilia nursesfrom around the world met toattend presentations done by theirnursing sisters: Nathalie Aubin,from the Montreal Children's HTC,was the first, presenting, anexcellent review of rarecoagulation deficiencies. In a clear
telemetry. This innovative processallows health care professionals tocommunicate with their patient andsee them on the computer screen.A diagnosis and treatment plan canbe established quickly andefficiently from a distance and thenumber of hospital visits can be cutback. The quality of life for thepatient's whole family is greatlyimproved thanks to this system.Ginette Lupien, from the EasternQuebec HTC at l'Hôpital Enfant-Jésus, and Louisette Baillargeon,from CHUS - Hôpital Fleurimont,prepared a poster whose authorswere Ginette Lupien, NathalieAubin, Louisette Baillargeon,Claude Meilleur, from Saint Justine'sHTC, Sylvie Lacroix and ClaudineAmesse. The poster dealt with thebooklets written by the Quebec
and concise manner, she describedthe symptoms associated with eachof these diseases as well as thevarious treatments. By using casestudies of different types ofhemophilia, she explained thedistinctive traits of each disease. Atreatment and prevention plan toavoid bleeding has to be adaptedfor each deficiency.
Sylvie Lacroix, from the QuebecInhibitors Centre, presented aresume for nurses new tohemophilia care on thedevelopment of inhibitors. As usual,she managed to get people tounderstand the challenges facingfamilies and health careprofessionals when a persondevelops inhibitors to the missingfactor.Sylvie also gave a secondpresentation during Congress onher method for home care via
byClaudine AmesseNurse Coordinator at theSainte-Justine HospitalHemophilia Treatment Centre
continued on page 8 >
Little 10-month-old Dilan can now enjoyhome care…and life!
8
NURSES’ CORNER (cont’d)
nurses on rare bleeding disorders.Booklets on factors I, II, V, X andXII were added to the first threebooklets presented at the congressin Seville in May 2004. On readingthis poster, one realizes that theseinformation booklets on rarecoagulation deficiencies meet aneed for patients and treatingpersonnel. There were over 12,000visits to the CHS Internet site and4000 downloads.Catherine Sabourin, from theMontreal Children's Hospital HTCpresented an excellent poster onvon Willebrand Disease inWhapmagoostui. An unusualnumber of people with vonWillebrand Disease have beenidentified in this Cree communitylocated in Northern Quebec.Members of the Montreal HTCmade two trips to this outlying area.They shared their knowledge ofVon Willebrand Disease withmembers of the local healthprofessional team and helped themestablish treatment plans adjustedto the particularities of the Creepopulation.Nathalie Aubin presented a posteron the electronic calendar system,Advoy, offered by Baxter. Shecompared the electronic version tothe paperversion.Patients filledin their bleedsheets moreregularly andinformationwas morecompletewhen theyused PalmPilots. On thewhole, patientsare verysatisfied with this system.
Sylvie Lacroix also chaired asession on a multi-disciplinaryteam approach to the treatment ofinhibitors. During this session, wegot a chance to hear the touchingstory of Guy-Henri Godin, a 38-year-old Montrealer with severehemophilia who has had inhibitorssince he was young. NichanZourikian, physiotherapist from
Sainte-Justine's, spoke aboutdifferent approaches used in thedeveloped and the developingworld. Both societies have the sameobjectives: to prevent bleedsand/or reduce the frequency andseverity of bleeds and theassociated complications. Dr.Georges-Étienne Rivard, fromSainte- Justine's Hospital andCongress President, presented onthe importance of adapting thetreatment team's interventions tothe needs of the patient.Francine Derome, research nursein hemophilia at Sainte-Justine'sHospital, did a colossal amount ofpaperwork that permitted Dr.Rivard to present a study on therisk of developing cancer followingradioactive synovectomy.In between information sessions,where we caught up on the mostrecent findings, I took part in ameeting with our Tunisia - Quebectwinning group. What a greatopportunity for the two groups toclarify this partnership and makeplans for a project that can onlybenefit both parties.I also had the privilege of beinginvited to a meeting between theFrench Hemophilia Association andthe Canadian Hemophilia Society.I was able to share my viewpointas a hemophilia nurse aboutprojects discussed by the twoorganizations.Informal but very stimulatingmeetings also took place betweenFrancophone nurses from France,Belgium and Quebec and projectswere developed.An information session clarifyingthe electronic calendar programEZ Log was held with theparticipation of Sylvie Lacroixwho's responsible for this programat Saint Justine's Hospital.Nathalie Aubin, Sylvie Lacroix,Catherine Sabourin and Ivolunteered to work at the congresstreatment room and care for peoplewho go there. Teams from thehemophilia treatment centres ofthe hosting country, mainly thenurses and doctors, organise anddispense care at the treatment
room during a congress. This is thefirst time there was also aphysiotherapy room at a congress.It's mainly people suffering withsevere hemophilia who takeadvantage of these services. Themajority of people who visit thetreatment room come fromcountries where access to treatmentconcentrates is infrequent or non-existent.The time spent in the treatmentroom was definitely just aseducational for us as attending aconference. One can't stop fromthinking about how lucky weCanadians are to live in a countrywhere health care is accessible toall, no matter what the cost!As a nurse practicing since 1990 atthe Treatment Centre in SaintJustine's Hospital, I've been luckyenough to attend a number ofinternational congresses. I'vewitnessed the evolution of thenurses' participation in this type ofcongress. I'm very proud to see thatwe've made giant leaps in terms ofthe organization of the nursing day,the quality of oral and writtenpresentations as well asinternational relations. The moreand more frequent invitations tochair sessions are proof of this!The nurses are also more and morepresent on various workingcommittees, something I findmarvellous! This growingparticipation of nurses contributesdirectly to improving the excellentquality of care for the hemophiliapopulation. §
This growing
participation of
nurses contributes
directly to improving
the excellent quality
of care for the
hemophilia
population.
> page 7 continued
A few of the participants at the XXVIIInternational Congress of the WFH held inVancouver. On the picture you’ll find (from leftto right) Roxanne Nadeau, Claudine Amesse,David Pouliot, Mylene D’Fana and FrançoisLaroche.
9
FOCUS ON HEPATITIS C
And you can bet that a programspecifically designed for hepatitis Cdoesn't exist. The bestrecommendation would probably beto elaborate a program that suits eachperson since persistent effort remainsa key to the success of any exerciseprogram.If the idea of joining a fitness centreis for you and you know that theatmosphere will encourage you topersevere, that's the best solution foryou. However, if the very sight of oneof these centres gives you the heebie-jeebies, look for something else!The Quebec Government's recent 5/30Health Challenge encourages peopleto eat 5 fruits or vegetables and do 30minutes of exercise five days a week,any exercise, it's not the type of activitythat's important, but simply the act ofmoving.We now know that moderate intensityexercise can be just as beneficial tothe general state of health as exercisedone at a high intensity level. So,there's no need to follow a strict,demanding regime in weightlifting toget in shape. Walk — around yourhouse, in the woods or in the city —garden, dance, bicycle, swim, dolandscaping; in fact, anything you liketo do that requires movement isbeneficial.The person suffering from chronicfatigue will also benefit frommovement. He must find a balancebetween wanting to do too much andexcessive rest. He can take advantageof times when he feels better to moveand give his muscles the exercise theyneed to function properly.Looking for physical exercise can alsobe a good pretext to find support andencouragement from those aroundyou, something everyone needs tohave a good quality of life. §
Infection with the hepatitis Cvirus is often accompanied by aconstant state of fatigue that sleepdoesn't alleviate. Thisphenomenon is well known, eventhough it's not well understood.But what we do know is thatexercise is the best treatment.
Fatigue is the most common symptomreported by people suffering from achronic illness. And hepatitis C is noexception. One could say that almost70% of people chronically infectedwith HCV will report an abnormallevel of fatigue.A study compared 239 subjectssuffering from liver disease causedby alcohol, hepatitis B or HCV as totheir risk of having an abnormal levelof fatigue. About one-third of thepeople whose hepatic disease wasrelated to alcohol or hepatitis B hada high level of fatigue; as for HCV,two-thirds of the subjects (67%)included in the study made this claim.
UNKNOWN CAUSEThe cause of fatigue associated withhepatitis C is still unknown. Is therea biological explanation, such as aninfection in the central nervoussystem, which could explain the lowerlevels of attention and concentrationobserved in certain studies? Or is itmainly the psychological response tothe announcement of diagnosis that'shard to accept and even more difficultto live with? This latter hypothesiscan't explain everything since it's notrare that infection with HCV is oftendiscovered during the search for thecause of unexplained fatigue.If the causes remain unknown, whatis known is that the severity of theinfection is not the cause. Studies donot show a link between markers forinfection, like the viral load and liverinflammation scores, and the degreeof fatigue. There's also no link to themanner in which a person becameinfected with HCV.But studies show that successfultreatment that eliminates the virus
also has a positive affect on thesubject's life. The feeling of fatiguethat weighed heavily on the personinfected with HCV will disappear orgreatly improve.
EXERCISE: THE BESTPRESCRIPTION AGAINSTFATIGUEWhen one is tired, it's completelynormal and healthy to want to rest.But here we're talking about fatiguethat is the result of a busy day or alack of sleep. This type of fatigueresponds well to a good night's sleep.Fatigue associated with a chronicdisease like hepatitis C is different.So the solution will also be different.With this type of fatigue, a goodnight's sleep will continue to eliminatefatigue associated with daily activities,but it won't make any difference tothe basic fatigue that affects thequality of life of the infected person.Contrary to the 'normal' reflex thatmakes the tired person rest as muchas possible during the day, more oftenthan not exercise will be the bestantidote to fatigue related to chronicdisease. In order to be convinced ofthe positive results of exercise andthe negative repercussions of rest,one only has to think about the personwho's hospitalized in bed for anumber of days.This forced 'bed rest', no matter thereason why this person ishospitalized, always has a negativeeffect on his physical state. Sleepingtoo much or resting too much is tiring!An Olympic athlete doesn't preparefor competition by sleeping. It's morea question of balancing trainingperiods with rest.Various studies have been done onpeople suffering from hepatitis C, butmore so with cancer or chronic fatiguepatients, and all show the beneficialeffects of an exercise program.Measurements taken before and afterthe exercise program show asignificant improvement in the qualityof life of people who follow anexercise program, as well as anincrease in their endurance andstrength. Fatigue lessens and peoplereport that they are able to functionbetter in their everyday lives.
PERSISTENT EFFORTThere still isn't enough data to knowwhat type of program to recommend.
A constant state of fatiguebySuzanne ChampouxSpecial Contribution
The Focus on Hepatitis Ccolumn has been made possible
thanks to the financialcontribution of
Schering Canada.
10
XXVII INTERNATIONAL CONGRESS OF THE WFHHEMOPHILIA 2006 — VANCOUVER
My Experience in the WorldCommunity
I had the honour of being one ofthe two young Canadians (CoryPrestayko of Manitoba was theother) to attend both the pre-congress (NMO Training) and theCongress. Sometimes after a tripthere are so many great memories,you don’t know where to beginwhen the time comes to talk aboutit. This is exactly how I feel.But first, I’d like to thank theCanadian Hemophilia Society forgiving me this chance, and also theQuebec Chapter because theywould have assured my presenceif the CHS hadn’t chosen me.To start at the beginning, as witheverything, the best memory youkeep is that of human contacts.And I didn’t miss my chance tomeet and make friends with peoplefrom the four corners of the earth.The pre-congress was actually thebest chance to learn about peoplesince there were only about ahundred people at this event,contrary to the congress wherethere were over 4000 from thesame number of countries. Ilearned a lot from this experienceand I was forced to put ourprivileged situation in Quebec intoperspective.Once I got back home, my headfilled with inspiration and empathyfor our brothers around the world,I was convinced, and still am, thatthe people that I met, never mindall the rest, made this trip morethan worth it.Don’t get me wrong. There was alot more to my trip than‘socializing’. In fact, the schedulefor each day was very tight. Duringthe pre-congress, conferences andpresentations were designedspecifically for the development ofa national organisation like oursfor people with hemophilia. Attimes, developing and establishedcountries were separated so thateach one could deal with topics
relevant to their reality, and wewere reunited for morepresentations on general themes.For an organization like the CHSQor the CHS, the topics targetedincluded our weak points in termsof volunteer recruitment andfundraising. Sharing of knowledgebetween countries was a veryenriching way to deal with theseproblems.Then came the congress. I felt verylucky to have been at the pre-congress since it gave me thechance to have already made anumber of friends to talk withbecause otherwise, it’s fairly difficultto make new acquaintances in acrowd of the size present at thecongress centre.Nonetheless, it was easy enoughfor me to meet up with François,Mylene and Roxanne. Since wewere the four delegates fromQuebec, we divided up theconferences to attend in each timeslot. For most of the time, I choseto attend the conferences dealingwith scientific topics and, notably,I also attended a conference dealingwith youth, about which I’ll deal inthe Youth Corner of this newsletter.When doctors and researchers talkabout their discoveries, it’s noteveryone who can follow… So Ihad to really concentrate in orderto understand their presentations,but I can say that I didn’t leavewithout at least learning something.Amongst the recurring themes werethose of the prolonged life ofcoagulation products and genetherapy. In all cases, progresscontinues and augurs well for thefuture. The most unbelievable, butnonetheless serious, presentationI attended presented ongoingstudies of ways to transform, forexample, a cell from the thighboneinto a nerve cell!And finally, I’d like to say a wordabout the beauty of Vancouver andits surroundings. One thing thatamazed me was the proximity ofthe mountains and the forests tothe city.
Taking Vancouver public transport,I was able to go to a North-American rain forest and seeenormous Douglas firs that reach100 metres in height and are a half-century old!
David PouliotHemophiliac
Montreal
Impressions of a few participants
Mosquitoes and Hemophilia
I was attacked by millions ofmosquitoes and black flies. Theywere mercilessly crawling throughmy clothes and easily managed tofind every nook and cranny in myskin. They weren’t bothered in theleast by any insect repellant that Iused generously. Despite wavingmy arms around so much that Ilooked like a helicopter, nothingworked. I looked for shelter, nuclearif possible. To avoid scratching likea maniac, I tried thinking about otherthings; the sea, the sun, life withoutmosquitoes.Then I got to Vancouver, thatbeautiful city on the Pacifichemmed-in by snow-peakedmountains. Vancouver, where itoften rains, but where pedestriansare king. Vancouver that welcomedus for five unforgettable days duringthe last International HemophiliaCongress. As a physiotherapist newly arrivedin this field, it was an unexpectedoccasion; the quality and quantityof information that the scientificprogram offered answered many ofmy questions, and also helpedperfect my knowledge.
11
The first challenge when attendinga congress of this size consists inhaving enough energy to get toeverything that’s on the program:conferences, posters, symposiumsorganized by differentpharmaceutical companies. Youhave to make choices, often makecompromises. I vividly rememberthe opening conference.Most of all, I remember twonumbers: 500,000 and 80. The firstis the number of hemophiliacs inthe world, and the second thepercentage of hemophiliacs wholive in developing countries.I had just realized to what pointmost hemophiliacs have to dealwith pain and handicaps on a dailybasis, since they only have accessto factors or other basic treatmenton a sporadic basis. Thephysiotherapy treatment room,organized for the very first time atthis congress, allowed many ofthese young men attending thecongress to get basic physiotherapytreatment and, especially, advice.For Canadian physiotherapists whowere working there, seeing theserious consequences of a diseasethat’s poorly treated was often ashock. We saw with our own eyesthe consequences described inbooks, but rarely seen in our youngpatients who have relatively easyaccess to basic care. We had to usea lot of creativity to effectively andcheaply temporarily fix certainproblems with orthotics and shoes.My participation at this congressallowed me to develop a contactnetwork, something that’s essentialso that I’ll be able to get answersto my questions in the future.I achieved my objective ofimproving my scientific knowledge.I’ve come back certain in theknowledge that I’ll do things better,but also, of the importance ofphysiotherapy care forhemophiliacs.All I need now is to find myself ashelter…
Catherine van NestePhysiotherapist
Quebec City
A Serious Lesson inHemophilia Care around
the World
From May 21 to May 25, 2006 Iwas privileged to attend aninternational hemophilia congressfor the first time.I was very impressed by the size ofthis event. Over 4000 people from110 different countries from aroundthe world were present at CanadaPlace in Vancouver.What did I get from this congress?A serious lesson in the care ofhemophilia around the world!!!Let me explain: after 19 years ofdaily experiences with myhemophiliac children, I realizedhow lucky we are to live in Quebecand to have access to an excellenthealth care system that includesfree services, safe products that arereadily available, the quality of ourmultidisciplinary teams, as well asthe ease in getting information.For many hemophiliacs living inother countries, many services arelacking. For example: a lack offinancial resources, treatmentcentres that aren't accessible, alack of products, poor qualityproducts, various services offeredaccording to social class (if youhave money, you can get care, ifnot…)etc. It's unbelievable.So for those people, the congressis their chance to get care adaptedto their present health condition.Imagine the scenario: they getproper care one week every twoyears!!! Compare this to the qualityof life possible for our children incomparison to that reality. Ouf! It'salmost inhuman! It takes my breathaway and I realize that we oftencomplain for no reason here inQuebec!I was very touched emotionally bythis congress because, despite theseunacceptable situations, people gotaround (on crutches, wheelchairs,limping, etc…) with a smile on theirlips and looked us straight in theeye. We made contact instantly andnaturally!!!
So it's by sharing our knowledgeand our projects or our newchallenges that we can grow aroundthe world in order to improve thequality of life for our hemophiliacs!We have a worldwide challengehere.For instance, look at the excellentresults from prophylaxis in Quebec.It has a major impact on the qualityof life of hemophiliacs because itlimits bleeds in a very importantway. And so, when there's no bleed,there's also no damage to the joint,no pain, no physical limitationeither…and the chance to grownormally like others.Isn't prophylaxis a great stepforward!However, in order to get thisindispensable treatment, it takesmoney, accessible and safeproducts, specializedmultidisciplinary teams, etc…And in conclusion, this congressallowed each of us to learn more,to become aware of other countriesvery different from ours, and to buildinternational connections with ourpeers.Thank you very much to the CHSQfor allowing me to experience thisfirst congress. I'll always rememberit! §
Roxanne NadeauMother of two hemophiliacs
Victoriaville
HEMOPHILIA 2006 — VANCOUVER (cont’d)
As Congress President Dr. Georges-EtienneRivard addressed the participants at the openingceremonies.
The publication of this newsletter has been madepossible thanks to the financial contribution of these
pharmaceutical companies:
Certificate of recognition from theGovernment of QuebecOn April 23, the Deputy from Cremazie and DeputyHouse Leader, Ms. Michèle Lamiquin-Éthier, sentthe CHSQ a Certificate of Recognition (see photo)“for its invaluable volunteer participation, an eloquentwitness to its contribution to our community.”This recognition was given as part of NationalVolunteer Week.According to Ms. Lamquin-Éthier, “Volunteer workis an invaluable resource for communityorganisations. Thanks to the work of volunteers,these organisations offer services that permit greatersocial cohesion and a better quality of life withinthe community.”This recognition goes to every volunteer who sharesthe objectives that we've fixed and this, at all levelsof the organisation. Citing Ms. Lamquin-Éthier:“I wish to express our deep admiration for everyonewho generously offers their time and energy for thebetter of our collectivity.”
F.L.
Saquinavir® now available in a new500-mg formulaLast March 31, Health Canada approved a new500-mg tablet formula of saquinavir mesylate(invirase), that reduces the daily dose of pills to take
from 5 to 2, for a standard dose of 1000 mg per day.Invirase is a protease inhibitor used in the treatment ofHIV infection.According to the pharmaceutical company that makesSaquinavir®, Hoffman-LaRoche, this new formula willmake the drug easier to take and be more convenient forpatients. It will contribute to the compliance to treatment.The 500 mg pills are basically the same size as the 200 mgpills.This new 500-mg tablet formula of Saquinavir was
previously approved by the US Foodand Drug Administration as well as by the European Commission inDecember 2004 and May 2005, respectively.
F.L.
HIGHLIGHTS
