chsq 2005 summer camp
TRANSCRIPT
Canadian Hemophilia Society - Quebec Chapter Newsletter
CHSQ 2005 SUMMER CAMP2005 SUMMER CAMP2005 SUMMER CAMP
PORTRAITPORTRAIT
Our annual summer camp thattook place from August 7 to 12 atthe beautiful Camp Portneufwelcomed 24 participants including11 hemophiliacs. Everyone washappy with it. The kids and theirparents, the nurses who took careof them and those responsible forthe Camp Portneuf were alldelighted with their stay. They hadfun, learned self-infusion, for somekids, and good times were a dailyreality.
We were able to visit the camp withthe Liberal Deputy from Portneuf,Mr. Jean-Pierre Soucy. Thanks tohis presentation to the Minister ofHealth and Social Services, Mr.Philippe Couillard, we were able toobtain $3000 for this event. Thanksto this support, we could acceptkids who were on our waiting list.During this visit, local newspaperswrote articles. If you're interestedin reading the articles, contact usat the office. We'd be glad to sendyou a copy.Camp is a stimulating activity forboth the young hemophiliacs andfor their siblings. Friendships arestarted, some successfully learn toself-infuse and great memories aremade. We encourage theseyoungsters to attend again in 2006and thus continue to make thisactivity a rich and unforgettableexperience.
2005 SUMMER CAMP2005 SUMMER CAMPA WORD FROM THEEDITOREDITOREDITOR
I hope you were all able totake advantage of the superbweather we had this summer toenjoy some outdoor activities andhave a good time. The childrenwho attended the CHSQ summercamp certainly did take advantageof it, and you'll hear a lot about itin this issue.Autumn's almost here and with it,we get back to our regular coldseason activities: school, work,indoor pastimes… The CHSQ is nodifferent. During the next fewweeks, a number of activities willbe taking place: the family weekendfor those living with inhibitors, VonWillebrand Disease awarenessworkshops, social activities forfamilies with young children andall these, along with our majorfundraising activity: the sale of ourcolouring book. I encourage youto read about them in this issueand get involved as much aspossible.
Also in this issue, you'll read theinteresting story by the mother of ayoung girl who has factor XIIIhemophilia, a rare and little knowntype of hemophilia that has specificcomplications.In this edition, the series of articleson hepatitis C deals with the linkbetween hepatitis C and diabetes,another complication that this viruscan cause.I'd like to remind you that you cansend us your reactions or yourcomments after reading thisnewsletter by communicating withthe CHSQ offices (see coordinateson page3) or directly with me at thee-mail address that appears at thetop of this page. Your opinion isimportant and other readers couldbenefit from it.I hope you have a beautiful,colourful autumn!
EDITORIALSTAFFEditor:François LarocheContributors:Claudine AmesseSuzanne ChampouxMylene D'FanaFrancine DeromeMartin KulczykÉdith MaugerAline OstrowskiDavid PouliotChantal RoyPatricia StewartProofreaders:Martin KulczykAline OstrowskiPage layout:François LarocheYves BolducTranslation:Patricia Stewart
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CHSQ 2005 Summer CampCamp Portneuf, inSaint-Raymond-de-Portneuf 1
A Word from the Editor 2
Editorial 3
A Word from theExecutive Director 4
Fundraising 4
CHSQ Activities 5
Parents’ CornerThe Audrey’s Story 6 & 7
Nurses’ Corner2005 Summer Camp 8 & 9
Youth Echo 9
Focus on Hepatitis CHepatitis C Increasesthe Risk of Diabetes 10
Summer Camp in Pictures 11
PortraitLaurent Pontbriand 12
EDITORIALEDITORIALEDITORIALHEPATITIS CHEPATITIS C
offer by trying to cut down onexpenses while not adding newactivities for the moment.
We are trying to ensurecontinuity in fundraising, butare back where we were lastfall with no FundraisingCoordinator. Yes, Serge Séguinis no longer working for our
organization. Communicationswas his strong point, and not
Fall is finally at our doorstepand the colours will brightenour days. The arrival of thisnew season means summervacation is almost over. I hopeyou all got to enjoy thebeautiful, warm weather wehad this past summer.
Right before summer break,the CHSQ Board of Directorsmet to work on a strategic planfor the future of ourorganization. The Boarddecided to raise the sumsdesignated for representationand advocacy issues and forvolunteer and employeedevelopment. The annualamount designated forresearch was increased 5%,which corresponds to $5,000more than was given in theprevious two years. I wasespecially concerned aboutraising our visibility with ourmembers to encourage afeeling of belonging. Nomembers, no organization…
We have been cutting backfunds in terms of activities we
fundraising. I wish him the bestin his next employment. Butthis doesn't stop us fromcontinuing to raise money.
We are in the process of hiringa new Program andFundraising Coordinator. Thiswill help our Executive Directorconcentrate her efforts onrepresentation, lobbying andvolunteer development.
In our last newsletter Imentioned the new CHSfundraising program. Sincethen, CHS has hired a newNational Director of ResourceDevelopment. The newFundraising Council will meetthis coming November inToronto. Many challenges layahead but we are sure we willovercome them and do ourbest.
The new CHSQProgram/FundraisingCoordinator will be part of thisCouncil along with MariusFoltea, Chair of our FundraisingCommittee and myself.
We always welcome newvolunteers, as well as ideas.All the work that is done byour volunteers and our staff isgreatly appreciated.
Thank you all!
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A WORD FROM THE EXECUTIVE DIRECTOREXECUTIVE DIRECTOREXECUTIVE DIRECTOR
YOUTH YOUTH
NURSES’ NURSES’
FUNDRAISINGFUNDRAISINGFUNDRAISINGreason to buyour book!!!We're veryhappy to beworking withRenaud-Bray onthis project andthe book will beavailable in alltheir outlets.You can alsobuy it at Braultet Bouthillier, in Montreal, who'vealso agreed to distribute our book.The book sells for $7 and we'd askthat you order your copies right awayusing the form that's included in thismailing and to start talking to peopleabout it.Please note that we still have copiesof Brimblehorn’s Christmas andBrimblehorn’s Surprise. Thesecolouring books are availableexclusively through the CHSQ at acost of $10, for the pair, while
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As you read in the editorial,because of the CHSQ decision tospend more time on advocacyissues, in developing its internalvolunteer structure and in findingnew sources of funding, we havedecided to hire someone to handleprogram coordination andfundraising.This person will be responsible fororganizing and coordinatingactivities destined for members andwill sit on the National FundraisingCommittee, along with designatedmembers of the CHSQ, such asMylene D'Fana and Marius Foltea.The other members of thisCommittee are employees andvolunteers who represent the otherprovincial chapters and the
National level. The first meeting ofthis Committee will take place thisautumn.The link between fundraising andprograms is direct: one can'tfunction without the other. In fact,funds raised during fundraisingcampaigns, like the Bowl-a-thonor from colouring book sales andthose from foundations,corporations or provincial deputiesare used to contribute to activitiesor to cover part of regular costs ofour organization.For example, this year we wereable to make up the funds we werelacking for summer camp thanksto our fundraising efforts. In 2006,we hope to instigate a trainingprogram for volunteers and weneed to find the funding to do this.We head into autumn with this inmind: maintaining our activities byensuring that we increase ourfunding in order to be able to endthe year without a deficit and,ideally, with a surplus. Ourfundraising activities are a greatoccasion for sharing: while sellingcolouring books, we can explainthe cause that touches us; by going
bowling, we get to spend time withour families and our friends and wecan also meet people who shareour reality.The key to success for ourorganization resides in the way thateach one of us participates inactivities. If we all make an effortto solidify this link between activitiesfor members and fundraisingactivities, which, in the end, are alsodestined for members because theyprofit by them, together we'll helpthe CHSQ complete its mission.There's a lot happening this autumn:the family weekend for familiesaffected by inhibitors, vonWillebrand Disease awarenessworkshops, the colouring bookcampaign and the social activity forfamilies with young children are allplanned.The main purpose of all theseactivities, as well as the otherservices offered by the CHSQ, is toincrease your quality of life as aperson with a bleeding disorder ora person infected with HCV or HIVfollowing a transfusion. So don'thesitate to participate!
2005 Colouring BookThis year we're celebratingBrimblehorn's Birthday!As we mentioned in the last issue ofL'Écho du facteur, our story is nowuniversal and it can be told andenjoyed all year long, becauseChristmas is no longer the maintheme. But our book is still a greatgift for the holidays and for this reasonwe'll be concentrating our sales effortson this in the next few months.Thanks to this new concept, we canfind buyers for our Brimblehorn allyear long and thus bring in more fundsfor the organization. We'd like you tohelp us make this happen by sendingus your ideas and by participating asa volunteer in our sales efforts thatwill take place in specific locations.There are all kinds of opportunities:summer camps, schools, communitycentres, daycares, individuals andcompanies, etc… Everyone has a good
quantities last. Therefore, you can alsoorder these two editions using theorder form enclosed and suggest youoffer the trio for $17. Many well-known companies havealready reserved all three. Pleasehurry!! Brimblehorn can’t wait to arriveat your place!
Donations from MembersIn the coming weeks, we’ll be sendingyou a letter and form asking you tothink about making the CHSQ one ofthe causes you support by donatingmoney, like we did last year.The CHSQ is a registered charitableorganization, so we are able to emitcharitable receipts for any donationgiven.Thank you to pay particular attentionto this coming mailing and help usimprove your quality of life and thatof your family.
A.O.
NURSES’NURSES’ CHSQ ACTIVITIESACTIVITIESACTIVITIES
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On Saturday afternoon, everyonewill be visiting the Capelton minesand the evening promising to geteveryone up dancing to the rythmof the music and for games led byan MC.
Holiday Activity in Montrealfor Families with YoungChildrenThe holiday activity for families ofyoung children (0 to 6 years) witha bleeding disorder will take placeSaturday, December 3.
On the program: we meet at 10a.m. for a visit to the Biodome, thena little show with Caillou at 11a.m.,followed by a pot-luck lunch in areserved room from noon to 2 p.m.
The participation fee is $5 perfamily and we ask everyone tobring a plate (sandwiches, salad,dessert,etc). The CHSQ will supplythe drinks and a few extras.
It's very important that you registerfor this activity by October 31st atthe latest by calling Geneviève atthe office at 514-848-0666, local21. We had to cancel this activitylast year due to a lack ofregistration by the deadline and wewouldn't like this to happen again.Thank you for your comprehensionand we look forward to seeing you!
Holiday Activity in QuebecCity for Families with YoungChildrenEach year we have a special day forfamilies with young children from0 to 6 years of age who have ableeding disorder, to give theparents a chance to meet and shareexperiences.
This year, for our Christmas social,we’re inviting you to spend theafternoon with us at the Musée dela Civilisation in Quebec City onSaturday, December 3rd . There’llbe workshops specifically designedfor young children, including oneabout the Middle Ages.
You’ll take a trip through time to astreet in a town : come and meetthe artisans, mason’s apprentices,innkeepers and sellers of all kindsof goods. Come and experience the
Hepatitis C DayDue to a lack of registrations, wewere obliged to cancel this activitywhich was to take place September24 in Trois-Rivières. We thoughtthat more of our members wouldregister.
We'd like to have a better idea whythis workshop had to be cancelledso we can hold an activity thatbetter meets the needs of peopleconcerned with hepatitis C.
Don't hesitate to call us at the officeand share your comments with uson this subject. Thank you.
Youth ActivityAs you can read in the article aboutthis activity, the outing that tookplace August 18 was a success.
We want to thank David Pouliotand Martin Kulczyk who, throughtheir volunteer involvement, madethis evening happen.
Family Weekend for Familieswith InhibitorsThe second Family Weekend forfamilies living with inhibitors willtake place October 14 to 16 atthe Manoir des Sables in Orford.
Two workshops will be held: onewith Dr. Georges-Étienne Rivardon Saturday morning and thesecond on Sunday morning will bea café-rencontre led by HélèneParé, psychologist.
Sylvie Lacroix, the nursecoordinator at the Centre deréférence québécois pour les sujetsatteints d'inhibiteurs will be on-site to assure treatment whilevolunteers from the CHSQ, alongwith animators, well be present totake care of the children during theworkshops.
byAline Ostrowski
[email protected] Ages thanks to dozens ofcostumes for children and adults!
There’ll be a snack in the afternoonand the possibility of having lunchthere. We’ll confirm this with yourregistration.
You must register as soon aspossible with Chantal Roy at418 663-2178 or by email [email protected]. We’llgive you more details soon.
A minimum charge of $5 per familyis required.
CHSQ Student Scholarshipsin Collaboration with Bayerand BaxterBecause summer isn't a good timefor obtaining reference letters orgetting school report cards, at therequest of a number of candidates,we've decided to extend thedeadline for applications toSeptember 15.
We'll be able to give you the namesof the recipients of the scholarshipsin the next edition of L'Écho dufacteur.
Von Willebrand DiseaseAwareness WorkshopsThe CHSQ, funded by ZLB Behring,will be offering awarenessworkshops about von WillebrandDisease in the coming autumn andwinter. One of these workshops willtake place on October 21, in theoffices of a Montreal organization —Concertation femmes. Otherssessions are being planned.
We thank the volunteers who haveoffered to attend a training sessionand then to present the workshop.If you're interested in being part ofthis volunteer project to helpincrease public awareness aboutwomen, and men, with bleedingdisorders, please contact the office.
PARENTS’ PARENTS’ PARENTS’ CORNER PARENTS’ PARENTS’
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must carry the defective gene forthe child to be severely affected.
Factor XIII is a serious coagulationproblem and is very rare. It'sestimated that there's one case in3,000,000 people. As soon a severedeficiency is diagnosed,prophylactic treatment is started.Factor XIII has a half life of 10 to20 days and has theseparticularities:- The clotting time is normal anda 3% level is sufficient for the clotto hold.- The principal characteristic ispoor healing of a wound.- There is an increased risk ofintracranial bleeds that can be fatal.- In 80% of the cases, thebleeding begins with the umbilicalcord.- It has a serious impact onfertility for both men (decrease inthe concentration of sperm) andwomen (miscarriage between the5th and 6th week).- There may be bleeding at thetime of childbirth.During the night of April 15, 2003,our dear little angel was taking hertime being born. So it was agreedupon to use the ventous or suctionin order to get to see what shelooked like. Oh - Oh! We didn'tknow what was coming.
Our little angel cried a lot. Thenurses accused us of not knowinghow to care for our baby. Theywanted to keep her in the nursery,accusing us of waking her up andbeing the reason for her crying.
Five hours later, they brought ourbaby back with no voice left, she'dcried so much. Audrey wasinconsolable. And there we were,back at home with our baby whocried for long periods of time.
More than two months after herbirth, Audrey had a concussion. Wethen understood that the ventousused during her birth had provokeda hemorrhage in her head, whichcaused severe pain and whichexplained her crying.
When she was 7 days old, Audreybegan to have persistent bleeding
Hello everyone,
I hope you all had a good summer.
I'd like to talk about the Step byStep program again. In the lastissue I told you about the officiallaunch of this new program. Thepeople from the CanadianHemophilia Society (National)worked very hard to make surethat everything works well on thewebsite, including the French site.
So, I invite all parents of younghemophiliacs to log on and get intouch with other parents. It's totallysafe and you won't get anyunwanted e-mails. You have to logon to the site to see the e-mailsfrom parents who want tocommunicate with you and it's upto you to decide if you want tocontinue the exchange. You don'thave to give your real name; youcan use an alias.
You're not obliged to make the firstmove. Perhaps you don't feel likeyou need to talk about yourexperiences because you'vemanaged to get through thevarious challenges alone(diagnosis, learning to infuse,home care…). However, youshould realize that there are otherparents who'd like to discuss thesetopics with someone like youwho's managed well. Your adviceor stories may be appreciated byanother family to aid in theirprogress.
I encourage all of you to registeron the Step by Step website. Here'show to do it in ten easy steps:1. Log on to CHS website:www.hemophilia.ca2. Click on the «Step by Step» icon(on the right of the screen)3. Click on «Parent to Parent» (onthe left side in the red section)
4. Click on «Register» (fill in theform and send it)5. You'll receive an e-mail toconfirm your registration (you can'tcontinue until you've answeredthis e-mail).6. Return to the site, click on«Create your profile» (fill in theform, submit it).7. You'll get a final e-mail.8. Then go to the site, click on«Open a session». A list of allparents whose profiles correspondto yours will appear.9. You can then choose a parentwith whom you'd like to chat orsimply wait until someone sendsyou a message.10. You only need to registeronce!!! Don't forget to visit the sitefrom time to time to see if you'vereceived any e-mails because thesewon't be sent to your personaladdress.Take the time to consult the«Forum». You access it in the sameway as the «Parent to Parent» site.Once you're in «Step by Step», clickon «Forum». Different themes willbe presented throughout the year.It's a good way to share with otherparents from across Canada.
If you have any problems with thesite, don't hesitate to contact theCHS.
In the last issue I told you about alittle girl with hemophilia in theQuebec City area. Her mother,Édith has kindly agreed to shareher story with us.
If you have any comments or ifyou'd like to share something inthe Parents' Corner, don't hesitateto contact me.
The Audrey’s Story
Today, we're going to tell you astory about Audrey. Who, you askme? Audrey. A girl. Oh, and yes,Audrey is a little girl withhemophilia.
Factor XIII deficit is a hereditarycoagulation disorder. It affects bothmen and women. Both parents
PARENTS’ PARENTS’ PARENTS’ PARENTS’ PARENTS’ CORNER (cont’d)
Audrey underwent so manysurgeries on her navel that we lostcount. When she's old enough todecide, she can undergo anothersurgery to rebuild the navel if shehas a complex about it, because itisn't like others.
All this turbulence at the beginningof her life wasn't withoutconsequences for Audrey. She wasvery insecure and clung to us asmuch as possible to protect herself.
During her first year, our family lifewas greatly disrupted by herbehaviour:- Audrey clings to me, hermother. I'm the only one who cantake care of her and she constantlywants to be held.- She has problem with food. Shedemands to be breastfed and forsolid foods, we have to keep toprecise rituals, otherwise sherefuses to eat.- She has problems sleeping, somuch so that medical personnelquestion whether she actuallyreaches deep sleep because shewakes up so often during the night(more than 15 times).She sleeps in my armsor in my bed with me.I bring her in with me;it becomes a questionof survival.- She has a problemwith anything that's notpart of her routine athome: she cries in thecarriage, she cries in thecar, and she cries whenwe go to see membersof the family. She hasa problem adapting toanything new- When she wasabout one year old,Audrey would gothrough a post-traumatic shock for 2to 3 weeks after eachprophylactic treatment.She started to wake upat night again, and
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from her umbilical cord. That'swhen we began the two-monthlong dance of intense medical carethat significantly affected her life.
She was hospitalized at 9 days.They thought there was anabnormal structure of the umbilicalcord.
A few days later, she was operatedon under general anesthesia forthe first time. They found thateverything was normal in theformation of her umbilical cord. Atour request, a hematologist wascalled in to see her. He quicklymade a diagnosis: Factor XIIIdeficiency and asked to meet us assoon as possible. Audrey had tohave her first treatmentimmediately: her life was in dangerbecause she had already beenbleeding for over a week. What arelief to get a diagnosis and knowthat Audrey was out of danger.
They asked us if there was anypossibility of consanguinitybetween my husband and me,since this is often seen in cases offactor XIII deficiency, but thiswasn't our case.
Audrey received her firsttransfusion of fresh frozen plasmawhen she was 14 days old. Thisput an end to the hemorrhaging ofher navel. Considering the risk forcerebral hemorrhaging, she wasput on a prophylactic program atthe Quebec hemophilia clinic.
As we mentioned, the maincharacteristic of factor XIIIdeficiency is poor wound healing.In Audrey's case, this is exactlywhat happened… In the course ofthe 6 weeks following thediagnosis, Audrey was eitherhospitalized, or was at home anda nurse from the CLSC visited everyday to change the bandages. Addto this the appointments with thepediatrician for vaccinations,prophylaxis, follow up for thesurgery…All in all, at the end ofthe first two months of Audrey'slife, we only spent 2 days alonewith her at home!
suffered from hypothermia to thepoint where we felt the cold throughher pyjamas.
Her first Christmas was a milestone.It's as if, from that point on, Audreyunderstood that life can also be fun.As parents, we learned from thesefirst joyful moments that we had totry and increase the positive eventsin her life to counterbalance thenegative episodes that tainted thebeginning of her life.
With time, all the problems withbehaviour decreased to the pointwhere today, Audrey hardly showsany insecurity. She's 28 months oldand her life is almost normal.
As parents, the most difficult thingfor us to experience in all this wasthe negation of the diagnosis bycertain members of our entourageand their severe judgment towardsus in regards to Audrey's insecurebehaviour. However, we want tothank all those near and far whohave helped us during this difficultperiod of our lives.
Édith, Michel et Audrey
NURSES’NURSES’NURSES’ CORNER ACTIVITIESACTIVITIES
We're very pleased to havethe opportunity to tell you aboutthe fantastic time we had duringthe 2005 summer camp. Therewere 24 wonderful kids there fromthe CHSQ.Working sometimes in our role asnurses and, at other times, assurrogate mothers, we spent theweek in the company of kids withbleeding problems and theirsiblings.Aug. 8: A beautiful sunny Sunday,17 nervous kids and as manyworried parents, despite thereassuring presence of AlineOstrowski! Participants'information is updated. It's time toload the bags and the material forour mini-hemophilia centre. A lastgoodbye to parents (we noticedthat some parents where hidingbehind sunglasses even though wewere in the shade!!!) and we'reoff! The adventure begins.In a small bus, sitting all together,the laughter and talking quicklybegins, friendships are made.Halfway there, we stop for a picniclunch that lets us stretch and visitthe restrooms.After 3 hours on the road, we'refinally there - Camp Portneuf!There's lots of luggage and it'sheavy! Luckily, everyone pitches into help.The cabins, located in a clearingaway from the beach, are almostnew and they're comfortable andwelcoming. We meet thecounselors and seven other kidswho didn't take the bus with usand the fun begins.The cottage used as the infirmaryis perfect: a large, well-lit room, abig table, lots of chairs and an extradormitory - just in case. The
The kids have extremely busy daysin terms of physical activity. As inall summer camps, they have todeal with a rocky, uneven terrainwith inclines and sandy beaches.They often participate in sports thatthey're not used to. Our kids wantto perform as well as anyone anddon't hold themselves back.Everything is there to increase therisk of having both muscular andjoint bleeding episodes.It seemed justifiable to us to slightlyincrease their prophylactictreatment. We made this decisionso as to prevent bleeding episodesthat would oblige us to have to keepthe child at rest and, in the end,defeat the objective of the camp.Throughout the week, we saw otheradvantages to increasing thefrequency of infusions: the increasednumber of teaching sessionsproportionally increased the kids'understanding and abilities and theiropportunities to learn self-infusion.These little morning sessionsallowed the hemophiliacs to meeteach other, to talk and get to knoweach other. Just seeing a friendgiving himself an injection iscertainly motivating and encouragesa youngster to learn.Our challenge each morning wasto make sure the kids got theirtreatment quickly so they wouldn'tbe late for the first activity of theday, while still encouraging themto prepare their own medicationand to self infuse.For the past few years, BaxterPharmaceuticals has had a programthat allows us to film the childrenwhile they're preparing to infusetheir medication. They send the filmto people's homes through theclinics a few weeks later. While thisis an excellent tool for motivatingthe children, it also makes theteaching sessions longer.The first morning, the little 6 to 8year olds immediately surprised uswith the interest they show inlearning to prepare theirconcentrates. What courage - andthey need it! It's hard to let someoneother than their parents or the nursefrom their hemophilia centre infuse
infirmary is adapted to the needsof hemophiliacs. It's well locatednear the cafeteria and easy to getto. Thanks go to the parents foridentifying materials as well as eachbox of factor concentrate, makingthis difficult day of getting installedeasier.The first contact with camppersonnel is encouraging. The headcounselor gives us a list of thegroups withtheiractivities forthe week,importantinformationif we're toestablish aprophylaxisplan adjustedto eachindividual.We meet thecounselorsbriefly to tellthem abouthemophilia,its origin aswell astreatment,preventionand thesymptoms ofa bleed. Wealso explainour role andourobjectives. As is the case each year,they're reassured to understand theproblems of the kids they'll beresponsible for during the comingdays.Right from the first meal until thelast, including snacks, the cooksucceeded in meeting the challengeof serving meals that were healthy,well balanced, economical and thatthe kids enjoyed! Sinks at theentrance to the cafeteria madegood hygiene easy. There's nowearing hats during meals, andthere are hooks to hold them.Every morning, our day starts earlyand a crowing rooster wakes usup! It's pretty funny. As soon asbreakfast is over, 8 to 10 kids arriveto get their infusions forprophylaxis.
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EXECUTIVE DIRECTOREXECUTIVE DIRECTOR
YOUTH YOUTH YOUTH ECHO
NURSES’ NURSES’ NURSES’ CORNER (cont’d)
FUNDRAISINGFUNDRAISING
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that we've been planning since thefamily weekend. We believe wecan truthfully say that the eveningwas a success and everyone hada good time.There were ten people who gottogether, including 7 hemophiliacs.We started the day with a meal atthe Cage aux Sports restaurant.
We filled our bellies and then tooka stroll to the Percival-MolsonStadium for a Montreal Alouettesgame. We were sitting in one of theendzones and there was no lack ofenergy in the crowd around us!
The Alouettes' players, it seemed,had also eaten well, but maybe notas well as the Calgary Stampedersbecause in the match between thetwo teams, the Stampeders cameout on top. Nonetheless, everyoneagreed that the match didn't lackfor excitement since each side tookthe lead in turn, only to lose it tothe other.
Our outing helped us see somethingthat we all really knew already:there's a spirit of camaraderieamongst the youth in the CHSQ.
We hope we'll be able to do thisagain and see each other moreoften, be it to do some volunteerwork or to have fun!
On Thursday, August 18, theYouth Group finally held the activity
them. We're kind of nervous, too,because we're afraid of losing theirconfidence. Feelings run high. Buteverything ended well and webrought them to their groups,assured that they'd have a greatday at camp with no bleeds.Then the 9 to 12 year olds got theirturn. They can prepare theirconcentrates, but have a bit oftrouble finding their veins, findingthe courage to pierce the skin andthen immobilizing it to get theneedle in. They mustn't loseconfidence in themselves. We haveto supervise them and show themsome tricks for their next try, andthen they're off to join their groupsand take advantage of the day.And finally, the 12 to 15 year oldswho surprise us with their abilityand their level of autonomy! Mostof all, they just need to becongratulated for what they'veachieved and encouraged tocontinue.
After this emotional morning, wegot ready to photograph the kidsduring their activities. We were verypleased to realize that it's now hardto distinguish the kids withhemophilia from the rest of thegroup! No complications of bleedsare visible like they were before.Long live preventive treatment!At the same time, we understandwhat parents of kids withhemophilia must feel while wewatch these intrepid little campersand their comrades venturing ontoraised posts on the climbing trail,running along the paths and takingpart in other activities!The nurses used to visit the kidswith hemophilia in their roomsevery night to make sure that noone was having a bleeding episode.This year, we questioned thewisdom of doing this in order toavoid identifying hemophiliacs asfragile people who need to be
overprotected. Instead, we askedthe kids to come and say goodnightto us in the cafeteria after the snackand we used this occasion to watchthem walk and discretely ask aboutthe symptoms of a possible bleed.
The days at camp sailed by this wayexcept that, each morning, newlittle miracles happened that gaveus all, kids and nurses alike, reasonto rejoice, like the little hands thattrembled when they tried for thevery first time to insert the needleinto a vein and then were successfuldespite everything! Everyone sharesthe pleasure of this success.
Camp represents an unforgettabletime, filled with both laughter andtears. This is a great opportunityfor the nurses to get to know thechildren and to love them evenmore!
Wow! What a wonderful week!
EDITORIALEDITORIALFOCUS ON HEPATITIS CHEPATITIS CHEPATITIS C
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specific studies are necessary inorder to know whether eliminatingHCV automatically causes thediabetes to be cured.
Even though some hypothesis havebeen put forward, for the moment,no one can explain by whatmechanism HCV increases the riskfor diabetes in certain subjects.
Thus the detection of diabetesshould be part of the follow-up forcarriers of HCV, especially if thereare precedents of this disease inthe family and if the hepatic diseaseis fairly advanced.
A modification in lifestyle habits(food and exercise) should also beenvisaged by carriers of HCV so asto decrease the risk of developingdiabetes as much as possible.These precautions are even moreimportant when other familymembers suffer from diabetes.
Epidemiological studies showa link between infection with thehepatitis C virus and an increasedrisk of developing type II diabetes,or the diabetes that appears withage in certain people who areoverweight. Various researchteams have studied the linkbetween hepatitis C and diabetes.
To begin with, an American team(Cleveland Clinic and Foundation,Ohio) wanted to see howfrequently carriers of the hepatitisC virus (HCV) developed diabetes.They followed 179 carriers of thevirus: 14.5% among them sufferedfrom diabetes while in the generalpopulation we can expect anaverage of 7.8%. In a populationof subjects presenting with ahepatic disease other thanhepatitis C, the average rate ofdiabetes is 7.3%, this being a ratesimilar to the general population.The presence of HCV thereforeseems to be associated with anincreased risk for developingdiabetes.
In analysing the files of diabeticcarriers of HCV, these Americanresearchers found that the riskfrom diabetes is greater in thosewith more advanced hepaticdisease. The diabetic rate is 5% ifthe hepatic disease is in stage 0to 2, this being a rate comparableto the population in general,compared to 21.4% for those instage 3 and 4.
Genetic predisposition
They also noted that the risk ishigher for subjects who reportproblems with diabetes in theirfamily.
Thus, according to this study, therisk of developing diabetesincreases if there is the coexistenceof HCV infection, advanced hepaticdisease and a geneticpredisposition. Normally, type II
diabetes appears with age,especially if there is excess weight,but in the case of hepatitis C, theweight of the subject doesn't seemto play as important a role as itdoes in the general population.
Researchers from Johns HopkinsUniversity (Maryland) studiedsubjects with cirrhosis: 97 werecarriers of HCV while 194 sufferedfrom cirrhosis due to another liverdisease. The rate of diabetes was19.6% in the presence of HCVcompared with 11.5% in the groupwithout HCV.
Moreover,two majorstudies,oneAmericanand theotherItalian,haveshown thatit's mainlythe HCVthat isassociatedwithdiabetes. Infact, therate ofdiabeteswas twiceas high inthe case ofhepatitis Cincomparison to hepatitis B.
The connection between HCV anddiabetes was also shown using agroup of diabetic subjects. In alarge American clinic, peopleconsulting for diabetes were testedfor the presence of HCV. The rateof infection was 4.2%. They alsolooked for the virus in people whowere seen for a thyroid imagingtest, thus with no relation to ahepatic disease; the rate was only1.6%, almost three times lower.
And finally, it seems that diabeticcarriers of HCV who responded totreatment with interferon for theirhepatitis saw an improvement intheir diabetes. However, more
2005 SUMMER CAMP2005 SUMMER CAMP2005 SUMMER CAMP IN PICTURESEDITOREDITOR
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C S H Q
A Camper's Story
This summer, my two brothersand I went to Camp Portneufand we had a good time!Especially since I was able tobring one of my friends withme. This was the first time thatI could bring someone along.Also, since I'm a bit youngerthan the other girls withhemophiliac brothers, I wasalways the only one from theSociety in my group, but thisyear we were together. Weeven made new friends.This week at camp wasmagical for me and a vacationfor my parents. My parentsalso no longer need to givemy little brother his treatment,because he learned how to doit himself with the help of hisnurse.Thank you to everyone whoworked to make this stay atcamp so much fun. I can't waituntil next summer!
Emily Blanchette
2005 SUMMER CAMP2005 SUMMER CAMP
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He also founded the LaurentPontbriand Foundation to helppeople infected with hepatitis C getinformation and support.
After participating in some activitiesorganized by the CHSQ, he decidedto get actively involved in 1998when he saw how muchinformation and support theorganization offered. There was adynamic team he could be part of.As soon as he was elected to theBoard in 2001, Laurent took up thecause for compensation for allthose infected with HCV throughthe blood system, taking an activerole in this working group andlobbying government officials.
He has served on the CSHQexecutive, and sits on the CHSHepatitis C Working Group.
Laurent gets personal satisfactionfrom volunteer work, especiallywhen he sees someone for whomhis work has made a difference.
Laurent Pontbriand was borninto a family of 16 children andgrew up in the town of Lemieux,in Nicolet.
At 16, he traveled to Victoriavilllewhere he earned his high schoolleaving. Laurent went on to studyto be an electrician, and practicedthis profession during his workinglife. In Ste-Marthe du Cap, heserved as city counselor for 8 years,sitting on committees dealing withcity planning, the environment andleisure activities.
A turning point came in Laurent'slife in July 1990 when he wasseriously injured in a car accidentand could no longer work due toinjuries. He was also infected withHCV following a blood transfusion.He decided to use his spare timeto help others and began tovolunteer for a number of causes,including setting up the BlockParents and Neighbourhood Watchprograms.
Laurent spends any free timereading “anything he can get hishands on” and enjoys watchinghistory documentaries. Hecontinues to find new challengeswhere he can be of service to others,and feels lucky to be able to dowork at things he enjoys doing.
His warm personality and easylaughter have earned Laurent manyfriends and his dedication to thecause of hepatitis compensation,much gratitude.
P.S.