BloodlineBloodline

~Bloodline~THIS ISSUEFEATURES :

• Sri Lanka – Canwe help?

• Nova Scotia tocreate aConstitution

• Importance ofteamwork bySueAnn Hawes

• Inhibitors

• Word Find

To receive thisnewsletter

please call :

Nova ScotiaHemophilia

Society

(902) 482-4054

~ Nova Scotia Chapter Newsletter ~

How can we help Sri Lanka ??In May 2006 members ofthe Nova Scotia Chaptera t tended the Wor ldFederation of HemophiliaConference in Vancouver,British Columbia. It was atthis session that memberslearned how developingcountries were assistingthose less fortunate to treatbleeding disorders. It wasduring this session that oneof our members introducedthe other Chapter memberst o t h e H e m o p h i l i aAssociation of Sir Lanka.After numerous sessions,the membership decidedthat there was indeed a rolefor the Nova Scotia Chapterto play. In August, at theMaritime Family weekend,funds were raised by ourmembers to support HASLto support their priorities.Correspondence betweenHASL and ourselves can be

Sinhalese (74%), Tamil (18%),Muslims (7%) by ethnicity. male:female ratio is almost closer to1. Buddhism is the main religionwhich is followed by about 69%of the population with thepresence of Hindu (15%),Christianity (8%) and Islam(7%). From 1977 Sri Lanka hasbeen an open economy. It's aagriculture based economy withTea, Rubber, Coconut and rice.In the recent past textilemanufacturing has become oneof the major source of income.Beyond that there is hardly anyother major industrial incomesources. As a 3rd worlddeveloping country their percapita income is aroundUS$800-850. Sri Lankan arefortunate to enjoy a freeeducation up to and including afirst degree through government

CONTINUED PAGE: 8

February 2007 ~ Volume 1 Issue 2

quite sporadic due totechnology and that thegovernment of Sri Lanka isdeeply engaged in aninsurgency of its own. Inorder to understand HASL, itis best to introduce both itand the tiny country of SriLanka. Sri Lanka is an islandof around 65525 sq.kmwhich is just 32 km awayfrom southern India. Theyhave a population of about20Million who are mainly

Welcome to “NACCHO ”“NACCHO” stands for “NorthA m e r i c a n C a m p i n gConference of HemophiliaOrganizations”. This yearwas the 5th Annual NACCHOConference and was held inTempe, Arizona from January25th – January 28th. Theconference is held for staffand nurses of hemophiliacamps to improve summercamping programs for thebleeding disorder communityacross the country. It isf u n d e d b y W y e t hPharmaceuticals and this year

has enabled representativesfrom 52 different camps fromacross North America, as wellas six other countries to pulltogether as one group toimprove their skills and campprogramming. Peter Wilson andI had the privilege of attendingthis conference as directors ofMaritime Adventures Camp andwe learned so much. Thesessions ran all day Thursday,Friday and Saturday. Thehardest part was choosingwhich sessions to attend. Atsome points through out the

conference they would have 7or 8 different sessions going onat one time and you could onlyattend one. A very harddecision to make, believe me.For me, I learned the most inthe evenings when everythingcalmed down and you got tohave some one on one talkswith the other people from theconference. I learned so muchjust from talking with otherdirectors and nurses about theircamps that I have a wholerange of new ideas for ours.

Continued on Page 8

Bloodline Page 2 of 9

errischvaS (902) 482-4054

Canadian HemophiliaSociety - Nova Scotia

Chapter

3 Ferris DriveDutch Settlement

Nova ScotiaB2S 2C9

PHONE:(902) 482-4054

E-MAIL:nshemophiliasociety@hotmail.com

President - Sandy WatsonVice President - Peter WilsonSecretary - Katie HinesTreasurer - Steven Glazebrook

Communications & NewsletterDiane Cunning

Fundraising RepresentativeDiane Cunning

Maritime Family Weekend 2007Sonia Watson

Youth RepresentativePeter Wilson

Medical LiaisonTBA

Industry LiaisonSandy Watson

RecognitionSandy Watson

International Development(ie Sri Lanka)

TBD

Childrens Summer CampPeter Wilson and Katie Hines

Letter from the President…Happy New Year and welcome to 2007 from the Nova Scotia Chapter of the CanadianHemophilia Society. This year is setting itself to be very interesting and there will be newadditions to the program that haven't been attempted before by our Chapter, but wepromise to help establish our profile within the volunteer organizations and societies similarto our own.

Since the last release of our newsletter there has been a tremendous amount of activitiesand work from our volunteers. The 2006 Maritime Summer Camp led by Peter Wilson andKatie Hines was a big success. Held at Scotian Glen, the children were able to learn andhave fun. The nursing staff provided sound and constructive educational programs and allinvolved had the opportunity to bond. The 2006 Maritime Family Weekend was alsosuccessful. Organized by Betty Anne Hines, the program included presentations frommedical specialists, as well as the opportunity to have separate sessions for Mothers andFathers, including one focused on the Carrier issues. The 2006 Curl for Hemophilia wasanother success. Though smaller in number, the revenue generated will help fund theactivities of the Chapter in 2007. The last event was the Christmas movie day, organizedby Katie Hines, for everyone that was interested in meeting just before the holiday season.

In 2007, there are a number of activities planned that are intended to augment our currentofferings and maintain our traditional programs. In February there will be a session toreorganize and prepare ourselves for the events planned in 2007. It will also be aneducational session as well, and is tentatively being held at the IWK Hospital. Activitiesincluding the preparations for the 2007/2008 Annual General Meeting, the 2007 NovaScotia/Maritime Family Weekend preparations, the 2007 Maritime Summer Camppreparations and information from Camp Nacho, 2007 Pumpkin Regatta, 2007 NationalConference, planning of the follow-up newsletters, as well as reaching out to our membersin the construction of the membership list for future offerings from the Chapter.

The Annual General Meeting will be held in April at the Sackville Legion. The dates for thiswill be confirmed in the coming months and an agenda will be distributed to themembership. This meeting will encompass approving the direction forward by the Chapter,distribution of the annual report, presentations on the status of each of our endeavours,elections of officers, and yes, approval of the budget and fundraising needed to allow us tomove forward on our plans.

In terms of fundraising, planning has already started and more support is encouraged. OurFundraising Chair, Diane, is working through a plan to provide our organization greatervisibility amongst the other societies as well as new activities for fundraising that will bemore inclusive of our members

In terms of our traditional activities, they will carry forward with adjustments as required. Atpresent, the Family Weekend, may be overhauled as more questionnaires arrive withsuggestions on how to be more appealing to our members. As well, some changes toSummer Camp may be necessary to allow it to continue to be fun and a learningenvironment and will be made to make the session more cost effective for all. At present,Curl for Hemophilia remains the same.

In terms of new activities, there have been proposals for "Bowl for Bleeding Disorders", aone-day family information session similar to the one in New Brunswick in 2006, theWindsor/West Hants Pumpkin Festival, movie theatre rentals, and a Christmas party for

our members. These will be explored further at the AGM and other sessions.

For the Chapter itself, we want to maintain responsibility to our members, provide anunderstanding and execution of our purpose and National objectives, and to remain thesupport mechanism for all people with bleeding disorders in Nova Scotia.

Until the next newsletter, and if I do not see you at the 2007/2008 Nova Scotia ChapterAGM, have a safe and happy Winter and early Spring,

Sandy

BloodlinePage 3 of 9It is already our second issueof BLOODLINE and it seemslike yesterday that I wasdesigning the very first issue.We have had excellentfeedback as to the design andcontent and my goal is tocontinue making BLOODLINEenjoyable for you, the reader.Have any thoughts orsuggestions? We would loveto hear from you!!I have thought of severaltopics to discuss during thiseditorial, but the one I thinkwarrants conversation is thefeelings of fear and stress for“new to Hemophilia parent(s)”.We as parents need tomanage our stress and fears.Our Children seem to havewhat appears to be a sixthsense and are able to

EDITORIAL

Inhibitors and Immune Tolerance Therapy

antigen against FVIII is being produced.Usually no clinical problems arise, and so,in the past the acquisition of suchinhibitors would generally have goneunnoticed in the absence of such closemonitoring. In cases where inhibitor levelsare so high that FVIII is no longereffective, prophylactic use of FVIII isobviously no longer possible. Thesepatients are vulnerable to recurrent bleedssimilar to patients with hemophilia who donot receive prophylactic treatment. Inthese inhibitor patients alternativetreatment strategies become necessarywhen a bleed does occur.

The two major considerations in patientswith inhibitors are: how a bleeding episode(including surgery) will be managed; andwhether attempts should be made to getthe patient to stop producing inhibitors toFVIII through starting them on immunetolerance therapy.

Immune Tolerance Therapy (ITT)

ITT consists of delivering repetitive highdoses of FVIII in an attempt tooverwhelm the immune response andcondition the body so that it no longersees FVIII as a ‘threat to be eliminated’.There is no single accepted standardapproach to ITT. A variety of doses anddosing schedules have been effective inachieving tolerance to FVIII. Theaverage duration of therapy is 1.5 yearsand the success rate is close to 80%.Inhibitors often develop early in care,usually when patients are still veryyoung. Given the ser iousconsequences of inhibitors, ITT isgenerally initiated in all patients withhigh-titer inhibitors. While the prospectof ITT can definitely be daunting forparents with an infant, delaying ITT untila child is older is less than ideal. Risk isreduced and the greatest benefit derivedfrom abolishing inhibitors as early aspossible. Also, a young child willconsume far less FVIII in the process ofachieving immune tolerance than anolder child or adult of greater bodyweight.

One complication of hemophiliatreatment that concerns many parentsis the chance that their child maydevelop inhibitors. These antibodiesto FVIII neutralize its activity and/oraccelerate its clearance from thecirculation. Depending on the level ofinhibitors, treatment with FVIII can insome cases be rendered completelyineffective. As recombinant versionsof FVIII have now effectively removedthe risk of viral and other blood-borneinfections, the development ofinhibitors to FVIII now figure as themost serious complication ofhemophilia treatment. In the past,inhibitor production was suspectedwhen standard treatment for ableeding episode was less effective(or totally ineffective).In recent years, since the introductionof prophylactic use of FVIII, patientshave been more Such diligent testingundoubtedly leads to inhibitors beingdetected much more frequently.Sometimes they are transient(undetectable on retest). In themajority of cases, only a weakresponse against FVIII is beingmounted, and only a small amount of,

I knew was thathemophilia was possiblylife threatening. Now 3years later I havelearned how to manageand deal with my fearsand stress around theunknown. A few ideasthat I have found andmay help you manage

Stress and fear aroundhemophilia,1 ) E d u c a t e y o u r s e l fknowledge is POWER..2)Support System – Talk to ourmedical support at the IWK3) Support from others dealingwith Hemophilia – a situationsimilar to yours.I found the more I learned,reached out to others, andreceived support, the more itallowed me to deal with “thesituation at hand” better. I’mnot going to say that I don’thave stress about various“accidents” my son has andhow to manage them but whatI can say is with those 3 vitalcomponents the stress of anaccident doesn’t control me ~ Icontrol it.MY thoughts for the day….

ϑ Diane

tap into how we are feelingat various moments. Iknow as a new parentdealing with Hemophilia, Ihave, what some wouldconsider, “overreacted”but knowing what I knownow – it was a naturalr e s p o n s e . I w a suneducated, scared and all

Bloodline Page 4 of 9

Happy New Year Everyone!I am very pleased to have beenasked to contribute to this latestedition of “Bloodline”. Thisnewsletter is an excellentopportunity to share news withour bleeding disorder community.My topic to discuss iscomprehens ive ca re a themophilia treatment centres andwhy it is important!Hemophilia or other bleedingdisorders may affect differentparts of the body and manyaspects o f fami ly l i fe .Comprehens ive care a themophilia treatment centresprovides access to health careservices that support andpromote a healthy lifestyle forindiv iduals wi th bleedingdisorders. The comprehensivecare team consist of healthprofessionals who work withbleeding disorder families todevelop a plan of care. Each

Teamwork and Hemophilia - by SueAnn Hawes - IWK

In the last issue ofBLOODLINE, I called thiscolumn “The Support Groupon Paper”. In most supportgroups, the facilitator maystart with a “point to ponder”wh ich may s t imu la teconversation which oftenleads to a wide range of othertopics, related to what everthe main purpose of the groupis. It’s like an oral freeassociation experience- with ageneral focus.Over the past 20 years ofclinics, there have been manyquestions asked by parentsand young people. Aninteresting one from our fallclinic was, “How do I let go?”A mother of a 6yr old put thisquestion to a mother of a 15 yrold. What was the magicanswer? There was noparticular answer, they just

A Support Group on Paper - by Maureen Brownlow - IWK

member of the team is anexpert in a different area. Thecomprehensive care team atthe IWK pediatric clinicconsist of a hematologistdoctor, nurse coordinator,phys io therap is t , soc ia lworker, and a rheumatologistdoctor. The team works withthe family and other servicessuch as family doctors,

• access to a team of expertswith specialized knowledge,ski l ls and laboratoryservices

• provides ongoing educationinc lud ing prevent ion,recognition and treatmentof bleeding

• provides updates andaccurate information onbleeding disorders and thelatest research

I hope this provides some insight onthe importance of maintainingregular contact with the hemophiliatreatment centres.Looking forward to see you at yournext scheduled visit!Sue Ann HawesBleeding Disorder Nurse CoordinatorIWK Health Centre

had a chat about howemotionally challenging the“job” is. To me, the importantmessage was that they eachrecognized the need to “let go”and had made a plan togradually work on it. I’m surethat it was very important forthe mother of the younger boyto hear from a “veteran” motherthat she was on the right trackand that it’s not always easy.So, why is letting go an issuefor parents of children withchronic conditions? Is it abigger issue for them than forparents of children who haveno health issues? What domany parents feel when theirfirst child is handed to them?Do they feel their heart reachout to surround the child? Theirlove becomes a protectiveshield. Consciously or not, they

think that nothing will ever hurtthis child! Parents would runin front of a herd of elephantsto protect him or her!!!Somewhere between 0 and20, this baby has to developthe physical, emotional andeducational skills to live asatisfying personal andproductive life. Who is his/herfirst teacher? His or herparents, of course. What istheir role? Is it like the old-fashioned learn to swimtechnique- throw him off thedock, or the process involvedin preparing an elite swimmer-skill development, support anda positive attitude?

Continued on Page 7

Rendez-Vous QuebecMay 24th-May 27th

2007

This year the annual generalmeeting and the medicalsymposium is being held inpicturesque Quebec City. Onlywalking distance to the historical"Old Quebec". There will bemultiple workshops, exhibits, wineand cheese reception, and youwill be able to listen to variousMedical Experts and learn aboutall the latest research withbleeding disorders.Quebec is celebrating its 400thanniversary in 2008~not manycities in North America can claimthat "status", and it shows in itsnumerous h is tor ica l &architecturally diverse buildings.Join us in beautiful Quebec City,for our annual meeting and enjoythe wonderful culture.

Au plaisir de vous voir enMai a Quebec !!!

dentists and teachers topromote well being. It isimportant to be registeredat a hemophilia treatmentcentre and attend regularassessment visits for thefollowing benefits:

• establishes an ongoing contact intimes of surgeries,emergencies, etc.

BloodlinePage 5 of 9

Exciting announcement forOctober 2007 !!!!

I am very excited to announce thatthis year, the Nova Scotia Chapterwill be entering the Windsor / WestHants Pumpkin Festival inOctober. This is a large mediaevent. To sum it up, people fromall over THE WORLD come to seethis regatta. Farmer’s Almanaccome annually from Atlanta,Georgia, with a media crew,CBS, Sunday morning Early Showand even Martha Stewart wasscheduled to come last year butimmigrat ion and legal i t iesprevented it. This event is huge,numerous articles, pictures etc.have been in world widepublications, CBS provides fullcoverage of the festival along withcorp. sponsors (which is what wewill be) and 3 big metro Halifaxradio stations do a complete 2week promotion prior to thepumpkin festival. There are also3000 brochures in which we will benamed, with possibly a logo. Themedia attention that this event andits corporate sponsors receive isenormous. We will receive amassive pumpkin that we will pickup a couple of days prior to theregatta, carve out and paint withthe red, white and you, themefrom CHS. Wim Peters has agreedto paddle the pumpkin across theWindsor river with about 40 othercompetitors.

Continued on Page 9

Christmas Party 2006

We held our first ever SocietyChristmas party on Saturday,December 23rd at the EmpireTheatres in Lower Sackvil le.Families joined together to see “TheGrinch”, the classic Christmas Movie.25 people came but were reallyhoping to have more. If anyone hasany ideas/suggestions on what wecan do for next years Christmasparty, please email me and let meknow.nshemophiliasociety@hotmail.com

Family Weekend 2006 Survey

First of all, I would like to extend thanks to all who responded to the survey sent out inregards to the Family Weekend held August 25-27th, 2006 at the Salvation Army Camp inAntigonish. I would also like to personally extend thanks to the volunteers who made theweekend possible, namely Katie and Betty-Anne Hines, and the people who volunteeredtheir time to assist the operation of the event. If you still have a survey and if you areconsidering sending it back, remember it is not too late to respond, as it will help us planthe 2007 Family Weekend.

Some families pointed out that most of the presentations, although extremely informative,focused on severe hemophilia A. Those with other bleeding disorders and other degrees ofseverity were omitted. I think the biggest recommendation in this area would be for a widerrange of topics, so that it is more inclusive for the entire bleeding disorder community.There were also some suggestions to have more interactive presentations that areinteresting for the adults and older children not in day care. The current form ofpresentations targets adults.

Accommodations: In general, there was dissatisfaction with the accommodations, and thepeople who had concerns were mostly either willing to fundraise, or pay a registration feeto upgrade the accommodations. One suggestion involved not having a family weekendevery year, but every couple of years instead, to allow time for more fundraising, andrevenue generation to be directed at a better venue. A few respondents would like to seethe weekend held at a site more central so there is less travel time and expense for all ofour members.

Childcare: The majority of the respondents felt that their children were safely cared for.However, Some respondents would like to see more programming for the children.

Schedule: Some respondents were in favor of receiving a schedule of events andspeakers ahead of time. Some respondents felt that the family weekend and camp wasoccurring too close to the start of the school year.

One important side note is one survey noted that there was alcohol consumption at the2005 family weekend. I was under the impression that the Salvation Army Camp did notallow alcohol on the premises, and I was surprised and disappointed this occurred. Mostfamilies did not seem concerned that the weekend needs to be held at the same place andduring the same time every year, there were many wonderful suggestions from the peoplewho did respond and I included them below in point form. Some could even be used asfund raising opportunities as well:

• Family Picnic• Family Christmas Party• NS Chapter Website• Rotation of people planning events so there are fresh ideas

Family Weekend Committee

My name is Sonia Watson, and I will be leading organization of the 2007 Family Weekend.In the coming weeks I will be contacting the people who wish to be part of the committee(from the responses on the survey) with some information. Being part of the committee willallow the 2007 Family Weekend be exactly what you want it to be or at least have yourvoice heard and act on it. If you just want to have a say as to where you would prefer tohave the weekend then please join us. If you wish to be involved in the planning you aremore than welcome as well. If you would like to be part of the committee, and have notalready indicated so on the survey, please contact Sonia Watson at 902-482-4054 oremail: Sandy.Watson@rushcomm.ca

Bloodline Page 6 of 9

WORD FINDB C X X C A F O Q H F J D L C N Z S P ZY P A R E H T O I S Y H P R L I K D G OH J Q P T V I O Z F N B Y P H S L E S LY C N E I C I F E D I O K G B S M E O GW R S C C L M S S Z P B K J Z E I L Z BS E E U O K L I N R S F R K W R N B R RM L I V Z N T A E E U T S I U P F G T UO H E D U I G C R C H E N A N O U F N IJ Y R S V O I R H I T E C X R M S Y E SW S K O S P C R E A E U R T B S I W M EB P N Y I E O N R S T S S P Y E O P T AD Y G T L M V T A E S D W V M D N R A NS Q A I O A N C D V J F A C T O R E E HN T Z S M E A C A R T I L A G E C V R RE E O S C R S C I T E N E G U Z P E T YD M A N R B P R O P H Y L A X I S N E ZE L O I X K Q E R C R E Y W U T P T F IP C E Q S T G K X T O S Q A S Q U I X MP R P Q V B X A I Y H B Q X A G E O E SS T F N N B E H R T B Z V R G Y I N C P

ACUTEBLEEDSBRUISECAPILLARIESCARRIERSCARTILAGECHROMOSOMECOMPREHENSIVECONCENTRATESCONGRESSCRYOPRECIPITATEDEFICIENCYDESMOPRESSIN

FACTORFIBRINGENETICSINFUSIONPHYSIOTHERAPYPLASMAPREVENTIONPROPHYLAXISSYNOVITISTREATMENTVANCOUVERVESSELSVWD

BloodlinePage 7 of 9A Support Group on Paper

Continued from pg. 4

In the family section of the CHSparent Resource, “Al l AboutHemophilia”, a parent writes aninteresting account of her family’sexperience with early home infusion.She speaks of using a “calm andmatter-of-fact” approach with hertoddler. The parents, older brotherand the little fellow had their roles, atage-appropriate levels. She speaksof him learning certain skills and newwords. In her final sentence she says,“ The diagnosis of hemophiliachallenged us to grow and develophealthy management strategies.Learning new skills, such as homeinfusion gives us, and eventuallyEmrik, control over the disease”. Thetake home message- the parentsmade a plan, taking into account theirfamily situation, were trained andsupported by their clinic staff andCHS resources.Some parents find “parentingpositively” an easy skill. Others havemore challenges. (I’m in thechallenged group) There are manyfactors that influence the style ofparent a person becomes. The styleof parenting each parent had as achild; the relationship between thechild’s parents; the personality of thechi ld; the family ’s personalcircumstances, etc.There are many places to gain moreinformation to strengthen yourparenting role. One such resourcewas discussed in the Summer 2001issue of “Hemophilia Today”. KarenCreighton, in her column “Families inTouch”, summarizes the highlights ofa presentation made to a group ofwomen affected by bleedingdisorders, by Dr. Barrera, apsychologist at The Hospital for SickChildren. Ms. Creighton wrote: “Dr.Barrera reviewed psychosocial riskfactors for children and for families.From the way we communicate withour children, to their individualtemperaments, our chi ldren’semotional health is influenced by anumber of factors. Our children areinfluenced by how we deal with theirbleeding disorder. Parents may beoverprotective, some may havedifficulty accepting the adjustmentsrequired in their daily lives after adiagnosis of a blood disorder, andsome may experience more anxietythan others.”

Maritime Adventures Camp 2007Planning Session in Halifax

by Sandy Watson

On February 25,2007, representatives from the NovaScotia and New Brunswick Chapters of the HemophiliaSociety as well as our medical community from four

separate hospitals in two provinces met to discuss the2007 Maritime Adventures Camp.. Topics included theperformance of the 2006 Summer Camp, areas wherethe staff can work towards a more efficient camp, and

ideas to add value to the camp as a whole and theexperience of our campers. There will be some

changes to the programming and administration ofthis event that will be communicated through the

Chapters to the membership. At the session, it wasagreed that the camp provides an opportunity for our

children to have fun while learning more aboutbleeding disorders, learning as a group on self

infusion, and an opportunity to hone skills in a less“clinical” environment. More information to follow.

”These risk factors expressed manyof our concerns and made us feelbetter as we understood ourreactions and difficulties are normaland even common.”A few of Dr. Barrera’s points,alongwith Ms. Creighton’s comments, areas follows:_ The child with the bleedingdisorder is a child first. …”Dr.Barrera added, children will learnfrom their parents and the examplethey set. How we talk about thebleeding disorder will affect how ourchildren feel about it.”_ Learn about your child’scondition,become informed.“Coping is enhanced by knowledge.The more we know, the better ablewe are to help our children andourselves. Talking to other familieswi th more exper ience…askquestions; …CHS and your localcomprehensive Care Clinic arewonderful sources of information.”_ Create an open environment forcommunication with your child.“Open communication can beaccomplished through direct andindirect communication….Choose agood time to get your child’sattention…Take time to notice theirbody language. What they chooseto tell you and what they do not wantto talk about.”_ Be honest about the impairmentor limitation(s) in a supportiveway e.g. explain it to the child.“There are times our kids are atgreater risk for social rejectionbecause of physical changes,impairments or limitations. We canhelp our children deal with thislikelihood by ;_ Re-framing it as uniqueness,explaining that everyone is uniqueand d i f ferent , normal izeuniqueness._ Model acceptance of theuniqueness, for the child tointegrate his/her uniqueness aspart of self_ Teaching the child how torespond appropriately, whenothers make inappropriatecomments._ Use challenges as teachingopportunities with your children.“Help your children learn how toresolve problems, and how to adaptto change. Children with chronichealth conditions often have aboveaverage self-confidence becausethey have learned a great deal aboutthemselves and handling adversity.”

The “Hemophilia Today”article illustrates two points-people with similar issues canjoin forces to bring in aspeaker to address commonconcerns and that, in thediscussion, everyone comesaway with a renewed energyand the reassurance thatyou’re not alone. A few othervaluable resources forparents and young people onthe “ growing with hemophilia”journey are: “Are You Readyfor This?”, a resource forpeople between the ages of11 - 18, developed by theAtlantic Hemophilia Nursesgroup. Parents need to readit themselves and becomfortable with the contentand approach so that you canreinforce the concepts. Bayerdeveloped a resource forparents and children fromearly school-age to juniorhigh, called “Hemophilia FromDiagnosis to Home Care, ASupport for the Journey”. It isan activity-format which helpsyou grow in knowledge andskills in a step-by-step format.Clinic staff can get you acopy.Bleeding disorder camps giveyoung people an opportunityto have fun with people whoexperience similar challenges,and in an informal way, beginto build up a peer supportnetwork outside the family.

Self-infusion is observed,may be learned andpracticed and, some day,taught to youngercampers.CHS Chapter familyevents are wonderfulopportunities for allmembers of the family tolearn together, sharec h a l l e n g e s a n dsuccesses and have fun.Perhaps new parents willfind mentors among them o r e e x p e r i e n c e dparents; parents ofyounger children will lookat the older children andyouth and take heart fromtheir normalcy and,hopefully, young adultsand their parents will lookat each other and think,“We’ve all done a goodjob.”L ike the Olympicswimmer, your childbegins with you andothers being the trainers.He/ she has had manyopportunities to practicethe necessary skills andbe successful, beforeclimbing on that startingblock. You’re not “lettinggo”; your child is “takingoff”!

schools and universities which caterto more than 90% of thestudents. Literacy rate is over 90% formales over 85% for females. SriLanka does have private schoolfacilities that are very expensive andbased on English medium.

Health Facilities: Same as theEducation, Health services areprovided free of charge through thegovernment controlled by the Ministryof Health. The average level of thehealth services could be rated highcompared to most of the South Asiancountries. There is however, areluctance to procure more expensivetreatments such as FVIII and FIX.

The Sri Lanka Hemophilia Association-HASL : Was founded byMr.H.B.Abeyasinghe at No.16A,Bomaluwa road, Mavilmada,Kandy. It isregistered at the Kandy DivisionalS e c r e t a r i a t u n d e r t h eReg.No.KUC/KDS/VOLUN/27 on 01-04-2002 as a volunteer NGO. Todate far they have been ableto conduct several successfulworkshops in Kandy and Colombo withpatients, family members and doctorswith an objective to find solutions fortheir common problems and toincrease knowledge on Hemophilia. InNovember 2005 we had a verysuccessful workshop in Kandy andColombo with the participation ofMr.Robert Leung and Mr.Miklos Fulopof the WFH with a team of doctors fromIndia lead by Prof.Mammen Chandy.As per a request they made to theWFH they were able to obtain theservices of a trained Physio from Indiaand another health care professionalwill be leaving to India for furthert ra in ing . Th is venture hasbeen supported by the WFH. HASLhas also started to publish their ownnews letter. Though they have hadseveral projects, they have notcollected any membership fees fromthe members and these projects weremainly funded by Mr.Abeyasinghe, fewmembers,and their personal friends.However, after these successfulprograms they have received very littlefunding from other sources.

Issues/ Requirements: A major issuethat HASL faces is the reluctanceof people with hemophilia and their

family members to come forward, asthey feel bad to let the Sri Lankansociety know that they are have ab l e e d i n g d i s o r d e r . T h i sis predominantly due to a lack ofawareness of the disorder. HASL needsto continue to have an awarenesscampaign which educates as manypeople as possible about Hemophilia,A s s o c i a t e d c o m p l i c a t i o n s ,Treatment options etc. In order tomaintain a good communication withl o c a l a n d i n t e r n a t i o n a lstakeholders they require equipmentsuch as: A fax machine, A photocopierand A printer. The best estimate isthat these items will cost aroundUS$1000 in Sri Lanka. Apart from theequipment they are seeking support tocover telephone,postage, and travelingcosts which is around US$70 permonth. The future support for thisgroup will be discussed at theupcoming annual general meeting. Aswell, our Chapter will be seeking arepresentative to work with HASL,providing a link between themselvesand ourselves

HASL proves to have an amazingchallenge in front of them thatwould be too daunting for most. Todate, I am very proud that membersof our Chapter have opted to assistHASL in their endeavour at theground level of a very complex,challenging, and worthwhileventure.

NACCHO Continued ~

What you begin to notice while talking tothese other people from, potentially; allover the world, is that as different as youmay be as an individual, you all shareone common thing, your love forHemophilia Camp. The joy andfulfillment I receive from HemophiliaCamp is rare, and something maybe onlya camper or staff member canexperience. And what a great thing it isto share that passion with one person letalone a huge group of people from allover the world. I can’t explain thefeelings I get while sitting at a fire, withthe 50 year old camp counselor fromMichigan next to me; as we sing anddance like campers to various campfiresongs. I feel like that is going to be me.I will be 50 years old and still proudlygoing to camp because I know that I ammaking a difference in these kids’ lives,like my counselors did for me as acamper. As the director, I get to watchthese kids grow into strong, intelligentand independent youth who willhopefully, in 10 years be the role modelsfor our next generation of bleeders. Soin closing, the conference has me firedand ready to go. Plans for “MAC 2007”have begun. To all my returning, as wellas new coming campers out there, I can’twait to see you for another great week atMaritime Adventures Camp!by Katie Hines

Curl for Hemophilia 2006by Katie Hines

Curl for Hemophilia 2006 wentextremely well. It was held on SaturdayDecember 2nd at CFB Windsor inHalifax. Approximately 55 participantsof all ages attended. We had 8 teamsthat played 3 rounds playing differentteams each time based on skill andscore. In the end, our winners were asfollows:1st place – Lisa Allen’s Team2nd place – Stephen Glazebrook’s3rd place – Dean Hines Sr. TeamWe had lunch catered by the CurlingClub (chili, chowder, soup with rolls andcrackers) perfect thing to warm us up!!Interested in joining us next year?Contactnshemophiliasociety@hotmail.comconfirming your address for us to sendyou your pledge sheets for Curl forHemophilia 2007.

BloodlinePage 9 of 9

MOVING ???

Name: _________________________Telephone: _________________________

New Address: __________________________ _________________________

Telephone: __________________________E-Mail: __________________________

Return to:

Nova Scotia Hemophilia Society

3 Ferris DriveDutch Settlement, Nova Scotia

B2S 2C9You can also contact us by telephone or email.

PHONE: (902) 482-4054E-MAIL: nshemophiliasociety@hotmail.com

Nova Scotia Chapter to enact a Constitution !!Pumpkin Regatta cont’d….

We will have a float inthe parade , Wim has offered histruck that we can do up with abanner etc., pass out candies andbrochures about Hemophilia (over40,000 people attend ed in 2006 ).In the back of the truck will be ourpumpkin, Wim (since he is the"Captain" of the pumpkin) and mostly children. More detailsto come as the details are ironedout. This event is big, and I trulyfeel that we will get excellentexposure for our Nova ScotiaChapter, awareness of hemophiliaand the CHS, promoting educationabout hemophilia and to raisedonations. We are looking forvolunteers (for a possibledonation booth), as well as manyfamilies as possible for theparade. We are counting on yoursupport and participation for thisevent...lets pull together as ateam, this is the most coverageour Nova Scotia Chapter has everreceived - lets all be there tocelebrate.... together !!!!

As of 2007, the Nova ScotiaChapter of the CanadianHemophilia Society hasentered its 41st year. Between the years of 1966and 2007 there have beenmany changes to Legislationthat has had an impact onsocieties on a number offronts. The Societies Act ofNova Scotia under theRegistry of Joint StockCompanies is one of thesechanges that the Nova ScotiaChapter must be incompliance with. There are ase r i es o f ac t i v i t i es ,submissions, audits, creationof constitution and bylaws aswell as the registration ofdirectors that must take placein order to be recognizedunder this act. I have

assessed that this is theprocess, including theacceptance of a constitutionand by-laws will takeapproximately 12 months.This will be followed byprocessing time through theprovincial government. Inorder to start this process, Iam seeking support of afew volunteers to assist mein the creation of a draftconstitution for the NovaScotia Chapter that will betentatively slated to bep r e s e n t e d t o t h emembership for review andapproval at the 2007 FamilyWeekend or at a Semi-Annual General Meeting nol a t e r t h a nSeptember/October 2007.Members interested in

providing support andc r e a t i n g a d r a f tconstitution and by-laws,please contact SandyWatson at 902-482-4054.After the 2007/2008 AGMwe will be seeking ap r o j e c t l e a d t ohelp formally establishthe management of theNova Scotia Chapterw i t h i n t h eProvince under theSocieties Act, from cradleto grave.For anyoneinterested in becomingthe project manager forthis effort, please contactSandy Watson to discussfurther.

WORLD HEMOPHILIA DAY - APRIL 17TH

FYI: World Hemophilia Day was started by the World Federation ofHemophilia back in 1989. The date April 17th was chosen in honour of theWorld Federation founder Mr. Frank Schnabel, who was born on that day.