National
Haemophilia Foundation Australia
Haemophilia www.haemophilia.org.au
No. 202, June 2018
LIGHT IT UP
RED #WHD2018
WORLD HAEMOPHILIA DAY 180512 HFA_journal-June_3.indd 1
29/5/18 3:19 pm
CONTENTS 2
New staff
3
From the President
4
WHD 2018
6
MyABDR – what’s coming up
7
TFF survey
10
Women and peer UWRRQTVs*(9#Æ‚PCN
12
Looking after your veins
14
Why is my child limping?
17
Transition
20
2018 Go For It Grants
20
About bleeding disorders brochure
21
Youth update
22
Youth News
24
Calendar/HFSA update
Haemophilia Foundation Australia Registered No.: A0012245M ABN: 89 443 537 189 7 Dene Avenue Malvern East, Victoria, Australia 3145 Tel: +61 3 9885 7800 Freecall: 1800 807 173 Fax: +61 3 9885 1800 hfaust@haemophilia.org.au www.haemophilia.org.au Editor: Suzanne O’Callaghan
0GYPoppy Staff Sparsi N a t i o n a l H a e m o p h i l i a N o . 2 0 2 , Ju n e 2 0 1 8
Poppy Sparsi joined the HFA team as the #FOKPKUVTCVKQP1HÆ‚EGTKP/CTEJ
2
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FROM THE
PRESIDENT Gavin Finkelstein
WeYKNNDGTGRQTVKPIQPVJG9(*9QTNF%QPITGUUKP )NCUIQY5EQVNCPFKPVJG5GRVGODGTGFKVKQPQHNational Haemophilia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oU(CEGDQQMRCIGQT6YKVVGTHGGF CHALLENGES OF COMMUNICATIONS
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N a t i o n a l H a e m o p h i l i a N o . 2 0 2 , Ju n e 2 0 1 8
WORLD CONGRESS
3
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MYABDR WHAT’S COMING UP? From the National Blood Authority and HFA MyABDR teams
WHAT HAPPENS TO YOUR USER FEEDBACK?
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N a ti ona l H a em ophi l i a N o. 20 2, Ju n e 2 0 1 8
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MYABDR TIPS
Some people are coming back to using MyABDR after being on a ENKPKECNVTKCNQTUVCTVKPIVQWUG/[#$&4HQTVJGÆ‚TUVVKOG9JCVVKRU do regular MyABDR users have for new users? Michael, a MyABDR user from South Australia, had this to offer: My favourite features are: U
4-digit pin access code for log in
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Easy-to-track stock levels
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Simple user interface for recording bleeds
My tips for new users or people coming back to it are: U
Get into the habit of bringing your device with you when injecting so it’s right there and you don’t forget.
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Put the app on your device’s front screen so it’s always in sight. Even subconsciously you will see it and this helps to remind you to use it.
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THE FEMALE FACTORS SURVEY Suzanne O’Callaghan +P#RTKN*(#WPFGTVQQMCPGXCNWCVKQPUWTXG[QHQWT VYQTGEGPVThe Female FactorsDQQMNGVUA snapshot of bleeding disorders in females and Finding out you carry the gene9GYCPVGFVQMPQYKHYGYGTGQPVTCEMYKVJ VJGDQQMNGVUYGJCFRWDNKUJGFCPFYJCVKORTQXGOGPVU VQOCMGKPVJGHWVWTG The Female FactorsKUVJG*(#YQOGPCPFIKTNU RTQLGEV6JGRTQLGEVKUFGXGNQRKPIURGEKƂEKPHQTOCVKQP TGUQWTEGUHQT#WUVTCNKCPYQOGPCPFIKTNUCHHGEVGFD[ DNGGFKPIFKUQTFGTUVQ r
Increase their understanding of their bleeding disorder,VTGCVOGPVUCPFUVTCVGIKGUVQOCPCIGKV
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7
(QTVJGUGYQOGPHGGNKPIUQHKUQNCVKQPCTGEQOOQP1,2 WHO COMPLETED THE SURVEY?
37RGQRNGEQORNGVGFVJGUWTXG[ 29 female, 8 male
6JG[YGTGHTQOCNNUVCVGUCPFVGTTKVQTKGUGZEGRV0QTVJGTP 6GTTKVQT[CPF6CUOCPKC FKFPQVFKUENQUGYJGTGVJG[NKXGF 72% YGTG31-54[GCTUQHCIG
BLEEDING DISORDER THAT APPLIES TO YOUR SITUATION
r r
70%
r 60%
KPVTQFWEVKQP KKPVTQFWEVK KPVTQFWEVKQPVQDNGGFKPI PVTQF FWEVKQP FW WEVKQ QP P VVQ Q DNGGF D DNGGFKPI DNGGFK NG GG GF FKKP PI I disorders in females YQTMKPIYKVJ*6%UCPFQVJGT JGCNVJECTGRTCEVKVKQPGTU
50%
40%
30%
20%
10%
Haemophilia Von willebrand disorder
Rare clotting Inherited Acquired Factor platelet function Haemophilia disorder disorder
Other (please specify)
PLEASE TICK ALL STATEMENTS THAT APPLY TO YOUR SITUATION 70%
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60%
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50%
N a t i o n a l H a e m o p h i l i a N o . 2 0 2 , Ju n e 2 0 1 8
40%
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30%
20%
10%
I have a bleeding disorder
I carry the gene
My partner has a bleeding disorder
I am the parent of a girl or women with a bleeding disorder
Someone I am close to has a bleeding disorder
I am a haemophilia health professional
I have a professional interest in bleeding disorder
EEQOOQPTGCEVKQPU QOOQP TGCEVKQ QP PU VQFKCIPQUKU YJGTGVQIQHQTUWRRQTV
WHAT DID THEY THINK OF THE BOOKLETS 86% had seen the Snapshot of bleeding disorders in females 66% had seen Finding out you carry the gene
What was the impact for them?
48% had seen the print XGTUKQP 66% had seen the onlineXGTUKQP
Âź-ÕÀÀi`“iÂœÂ˜ĂŒÂœw˜`ÂœĂ•ĂŒÂ“ÂœĂ€iˆ˜vÂœvĂ€ÂœÂ“ĂŒÂ…i`ÂœVĂŒÂœĂ€Ăƒ re children and starting a family.’
85%VJQWIJVVJG[YGTGvery or extremely useful 72%VJQWIJVVJGdesign and layout YCUvery good or excellent
‘More info and evidence of what I say is not rubbish.’
What did they like?
‘As a male, a broader understanding.’
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‘I have sought to talk with some others who I know have bleeding disorders to ask their advice.’
WHAT’S NEXT
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Suggestions for improvement
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‘People can refer to them again - conversations can be forgotten or misunderstood. When sharing information with others who are new to clotting factor issues they viiÂ?Ăƒ>vi>˜`Vœ“vÂœĂ€ĂŒ>LÂ?i>˜`V>˜w˜`>Â˜ĂƒĂœiĂ€ĂƒLĂ•ĂŒ>Â?ĂƒÂœ questions to ask health professionals.’
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‘My daughter was happy there was something that was just for females.’
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‘Great layout. Easy to peruse.’
“A lady found it in my work waiting room and was so thrilled to have something concrete about herself.� “Thank you for producing a quality resource for women and their families to use.� WHAT DID THEY DO WITH THE BOOKLETS? 68%RCUUGFDQQMNGVUQPVQother family members 18%UJQYGFDQQMNGVUVQtheir health professionals Why?
‘Was good showing my family.’ ‘To educate carriers in the family who are considering starting a family who hadn’t been informed about their considerations or connected to an HTC yet.’ ‘So that we are not alone and that we suffer as well.’ ‘Acknowledging that these symptoms are real and do affect the person’s life is very helpful. It is also helpful if they are able to talk about them to their doctors and to get some help with their symptoms.’
1VJGTTGUQWTEGUKPVJGRKRGNKPG
#PFYGCTGCNYC[UNQQMKPIHQTYQOGPVGGPCIGIKTNU CPFRCTGPVUQHIKTNUYJQCTGKPVGTGUVGFKPEQPVTKDWVKPIVQ VJGEQPVGPVYKVJKFGCUQTRGTUQPCNUVQTKGUQTTGXKGYKPI FTCHVUQHVJGTGUQWTEGU +H[QWYQWNFNKMGVQDGKPXQNXGFEQPVCEV 9QOGPoUTGUQWTEGUs5W\CPPGCV*(# E:UQECNNCIJCP"JCGOQRJKNKCQTICW T: 1800 807 173 6GGPCIGIKTNU[QWPIYQOGPs-CUU[CV*(# E: MFTWOOQPF"JCGOQRJKNKCQTICW T: 1800 807 173
REFERENCES *CGOQRJKNKC(QWPFCVKQP#WUVTCNKC9QOGPCPFDNGGFKPIFKUQTFGTURTQLGEV TGRQTV7PRWDNKUJGFTGRQTV/GNDQWTPG 4GPCWNV0-*QYGNN4'4QDKPUQP5GVCN3WCNKVCVKXGCUUGUUOGPVQHVJG GOQVKQPCNCPFDGJCXKQWTCNTGURQPUGUQHJCGOQRJKNKC#ECTTKGTUVQPGICVKXG GZRGTKGPEGUKPVJGKTOGFKECNECTG*CGOQRJKNKC
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‘The desire to educate more family members/well wishers/school educators.’
9
%JGT[N'NNKUKU8KEG2TGUKFGPV*CGOQRJKNKC(QWPFCVKQP9GUVGTP#WUVTCNKCCPFJCUOKNFJCGOQRJKNKC#
WOMEN AND P Cheryl Ellis
PEER SUPPORT FOR WOMEN IN A LOCAL CONTEXT
*QYCTGNQECN(QWPFCVKQPUGZRNQTKPIRGGTUWRRQTVHQT YQOGPCPFYJCVECPYGNGCTPHTQOVJGKTGZRGTKGPEGU!
N a ti ona l H a em ophi l i a N o. 20 2, Ju n e 2 0 1 8
6JGKORQTVCPEGQHRGGTUWRRQTVHQTYQOGP CHHGEVGFD[DNGGFKPIFKUQTFGTUYCUCMG[Æ‚PFKPIKP *(#oUEQPUWNVCVKQPHQTThe Female Factors2TQLGEV 1HVGPHGGNKPIKUQNCVGFCPFCUVJQWIJVJG[CTGVJG QPN[QPGUYKVJVJGKTGZRGTKGPEGUYQOGPJCXGHQWPF EQPPGEVKPICPFUJCTKPIUVQTKGUVQDGKOOGPUGN[ XCNWCDNGCPFGORQYGTKPI
10
6JGNQECN(QWPFCVKQPCEVKXKVKGUVQEQPPGEVCPF UWRRQTVYQOGPCTGCEQPETGVGYC[QHOCMKPIC FKHHGTGPEGHQTYQOGP*(#KUCNUQKPENWFKPIRGTUQPCN UVQTKGUHTQO#WUVTCNKCPYQOGPYKVJVJGGXKFGPEG based information in all The Female Factors GFWECVKQPOCVGTKCNU 6JKUTGRQTVHTQO*CGOQRJKNKC(QWPFCVKQP9GUVGTP #WUVTCNKC *(9# KUVJGUGEQPFKPCUGTKGUCDQWVNQECN RGGTUWRRQTVHQTYQOGPHTQO#WUVTCNKCP5VCVGCPF 6GTTKVQT[(QWPFCVKQPU A LITTLE BIT ABOUT ME
+TGOGODGTXGT[ENGCTN[DGKPIVQNFD[CLWPKQTTGIKUVTCT VJCVQWTDGCWVKHWNPKPGOQPVJQNFUQPJCFJCGOQRJKNKC *GO[JWUDCPFCPF+YGTGKPCRQUVQRGTCVKXGYCTFCVVJG
EJKNFTGPoUJQURKVCNUWTTQWPFGFD[QVJGTHCOKN[members. 6JKUCNNECOGCDQWVDGECWUGO[UQPJCFCPWPGZRNCKPGF UYQNNGPMPGG*GJCFLWUVUVCTVGFETCYNKPICPFJKUMPGG DNGYWRNKMGCDCNNQQPQPGFC[1HHYGJCFTWUJGFVQVJG )2YJQUGPVWUUVTCKIJVVQVJG'OGTIGPE[&GRCTVOGPVCV VJGEJKNFTGPoUJQURKVCNCUJGVJQWIJVKVYCUCRQUUKDNGLQKPV KPHGEVKQP#HVGTVJGQTVJQRCGFKEUWTIGQPYCUJGFQWVJKU MPGG VJGTGYCUCDNQQFENQVKPVJGMPGGDWVPQKPHGEVKQP VJGUWTIKECNYQWPFMGRVDNGGFKPI$NQQFVGUVUTGXGCNGF VJCVQWTUQPJCFUGXGTGJCGOQRJKNKC#
+NQQMDCEMPQYCPFUGGOQUVQHVJCVVKOGCUCDNWT9GJCF PQRTGXKQWUHCOKN[JKUVQT[DWV+MPGYYJCVVJGTGIKUVTCT YCUVGNNKPIOGUKPEG+oOCTGIKUVGTGFPWTUG*GCTKPIVJG YQTFUp;QWTUQPJCUCUGXGTGDNGGFKPIFKUQTFGTqHGNVNKMG CPKIJVOCTGVJCV+EQWNFPoVYCMGWRHTQOHQTCNQPIVKOG 'KIJVGGPOQPVJUNCVGTYGJCFCPQVJGTUQPYJQCNUQJCU UGXGTGJCGOQRJKNKC#*CXKPIUGXGPVGGPCPFUKZVGGP[GCT QNFUQPUYJQboth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oOEWTTGPVN[
EER SUPPORT 8KEG2TGUKFGPVQH*(9#CPFCOCÆ‚TODGNKGXGTVJCVUQEKCN PGVYQTMUCPFUWRRQTVUCTGXKVCNHQTYQOGP CPFHCOKNKGU VQ VJTKXGRCTVKEWNCTN[YJGPCEJTQPKEEQORNGZCPFRQVGPVKCNN[ NKHGVJTGCVGPKPIOGFKECNEQPFKVKQPKUVJTQYPKPVQVJGYQTMU
GXGPVUUWEJCUVJGHCOKN[ECORCPFJQYHCPVCUVKEVJG[ CTG6JGFKUEWUUKQPUCTGQHVGPPQVNGCFQTKPUVTWEVGFD[ CP[QPGDWVGXQNXGCPFITQYCUVJGEQPXGTUCVKQPUOQXG around the table.
5QOGETWEKCNRQKPVUVJCVJCXGGOGTIGFHTQOVJGYQOGPoU ITQWROGGVKPIUCTGVJGKORQTVCPEGQHTGEQIPK\KPIQWT QYPDNGGFKPIU[ORVQOUDGKPICYCTGQHQWTQYPHCEVQT 1WT9QOGPYKVJ+PJGTKVGF$NGGFKPI&KUQTFGT)TQWR
99+$& OGGVKPIUCTG2GTVJOGVTQDCUGFGXGPVURTQXKFGF NGXGNUCPFKHPGEGUUCT[JCXKPICVTGCVOGPVRNCPKPRNCEG D[*(9#VQCNNQYYQOGPCPFIKTNUCHHGEVGFD[CPKPJGTKVGF DNGGFKPIFKUQTFGTVQEQOGVQIGVJGTKPCTGNCZGFCPF PEER EDUCATION GPLQ[CDNGUGVVKPI*(9#JQNFVJGOCRRTQZKOCVGN[GXGT[ VJTGGOQPVJUCPFWUWCNN[CUC5WPFC[OQTPKPIDTGCMHCUV 'FWECVKQPCNKPHQTOCVKQPUWEJCUVJGFinding Out You 1EECUKQPCNN[YGOKZKVWRCNKVVNGCPFJCXGCHVGTPQQP JKIJ Carry the Gene and A Snapshot of Bleeding Disorders VGCQTNWPEJ1WT99+$&OGGVKPIUCTGWUWCNN[CVVGPFGF in FemalesDTQEJWTGUCTGITGCVTGUQWTEGUYGWUGVQ D[CP[YJGTGHTQOVGPVQVYGPV[YQOGPCPFHGGFDCEMYG RTQXKFGCUVCTVKPIRQKPVHQTKPHQTOCVKQPYJGPYGCPF JCXGTGEGKXGFKPENWFGUJQYGPLQ[CDNGVJQWIJVRTQXQMKPI QVJGTYQOGPKPQWTHCOKNKGUCTGKFGPVKÆ‚GFCUECTT[KPIVJG CPFDGPGÆ‚EKCNVJGOGGVKPIUJCXGDGGPKPVJGRCUV1PG JCGOQRJKNKCIGPGCPFYCPVVQUGGMCUUKUVCPEGRTKQTVQ QHQWTEQOOKVVGGOGODGTUCPFCTGIWNCTCVVGPFGGVQQWT UVCTVKPICHCOKN[QTYJGPRNCPPKPIRTQEGFWTGUCPFJQY OGGVKPIUJCUEQOOGPVGFVJCVVJGOQTGKPENWUKXGPCOGU VQCEEGUUUGTXKEGUCVVJG*CGOQRJKNKC6TGCVOGPV%GPVTG QHVJGYQOGPoUOGGVKPIUTGCNN[GPEQWTCIGUYQOGPYKVJ *(9#RTQXKFGFVJGDTQEJWTGUVQQWTOGODGTUVJTQWIJC XQP9KNNGDTCPFFKUQTFGTCPFQVJGTDNGGFKPIFKUQTFGTUVJCP OCKNQWVYKVJQWTPGYUNGVVGTUCPFGOCKNGFNKPMUVQCEEGUU JCGOQRJKNKCVQRCTVKEKRCVG VJG2&(UHTQO*(9#oUYGDUKVG+CNUQVCMGEQRKGUQHVJGUG 1WTOGGVKPIURTQXKFGQRRQTVWPKVKGUVQFKUEWUUKPFKXKFWCN DTQEJWTGUYKVJOGVQVJGYQOGPoUOGGVKPIU GZRGTKGPEGUCPFKUUWGUKORQTVCPVVQWU6JGTGCTGOCP[ EQOOQPUWDLGEVUQHFKUEWUUKQPUWEJCUJQYYGECOG VQÆ‚PFQWVQWTDNGGFKPIUVCVWUCPFJKUVQT[CRRTQCEJKPI FQEVQTUCPFOGFKECNUVCHHHQTCUUKUVCPEGKPVJGRCUVCPF EWTTGPVN[VJGRTQDNGOUHCEGFYJGPVCNMKPIVQOGFKECNUVCHH YJQFQPoVWPFGTUVCPFDNGGFKPIFKUQTFGTUQWTEJKNFTGPCPF VJGKTJGCNVJVTCXGNNKPIYKVJDNGGFKPIFKUQTFGTUCPFQVJGT
OTHER OPPORTUNITIES TO CONNECT
1WT[QWVJITQWRRCTGPVHCOKN[OGGVKPIUCPFHCOKN[ ECORUCNUQRTQXKFGIKTNUCPFYQOGPYKVJQRRQTVWPKVKGU VQVCMGRCTVKPHWPCEVKXKVKGUCPFOGGVQVJGTRGQRNGCPF families in similar situations.
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WOMEN’S GROUP MEETINGS
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4QD[P5JQGOCTMKU%NKPKECN0WTUG%QPUWNVCPV6JG%JKNFTGPoU*QURKVCNCV9GUVOGCF *GNGP5VCTQUVCKU%NKPKECN0WTUG%QPUWNVCPV4Q[CN*QDCTV*QURKVCN
LOOKING AFTER YOUR VEINS Robyn Shoemark and Helen Starosta
HomeVTGCVOGPVCPFRTQRJ[NCZKUJCXGDGEQOGCYC[ QHNKHGHQTRGQRNGYKVJJCGOQRJKNKC+VKUXGT[KORQTVCPV VQNQQMCHVGTXGKPUCU[QWYKNNPGGFVQWUGVJGOHQTC NQPIVKOG9JKNGIKXKPIHCEVQTOC[DGEJCNNGPIKPI [QWQT[QWTEJKNFoUECTGIKXGTUCTGVJGDGUVRGQRNGVQ CFOKPKUVGTHCEVQTTGRNCEGOGPVVJGTCR[WUKPIXGKPUQPEG [QWMPQYJQYVQFQKV
How do these exercises improve your veins?
WHAT ARE VEINS?
4GOGODGTKVoUNKMGCP[QVJGTGZGTEKUG+VQPN[YQTMUKH[QW FQKVTGIWNCTN[CPFKVYKNNEGTVCKPN[JGNRYKVJ[QWTKPHWUKQPU
8GKPUECTT[DNQQFDCEMVQVJGJGCTVCPFNWPIUHTQO CTQWPFVJGDQF[6JG[JCXGVJKPPGTYCNNUVJCPCTVGTKGU VJG[NKGENQUGTVQVJGUWTHCEGCPFFQPQVRWNUCVG6JG XGKPUENQUGUVVQVJGUMKPoUUWTHCEGCTGWUGFVQIGVDNQQF FWTKPICDNQQFVGUVQTVQRWVOGFKECVKQPKPVQVJGDQF[ *CXKPIIQQFXGKPUVQIKXGHCEVQTVJTQWIJKUPQVLWUV CDQWVIQQFNWEM.GCTPKPIJQYVQFQVJKURTQRGTN[CPF VJGPNQQMKPICHVGTXGKPUKUKORQTVCPVCPFTGSWKTGUYQTM *CXG[QWGXGTPQVKEGFJQYDQF[DWKNFGTUCPF DTKEMNC[GTUWUWCNN[JCXGDKIUVTQPIXGKPU!6JKUKU DGECWUGQHVJGWRRGTCTOGZGTEKUGUCPFYQTMVJG[ FQ;QWECPOCMGXGKPUDKIIGTKP[QWTCTOUD[FQKPI UQOGUKORNGGZGTEKUGU EXERCISES FOR VEINS
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1.
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2.
5SWGG\GCURQPIGDCNNKP[QWTJCPF5VCTVYKVJ VGPUSWGG\GUFCKN[CPFDWKNFWRVQUSWGG\GU RGTJCPFFCKN[6JKUGZGTEKUGJGNRUVQFGXGNQRVJG UWRRQTVKPIOWUENGU 2NCEGCVQWTPKSWGVCTQWPF[QWTWRRGTCTO +VUJQWNFDGVKIJVGPQWIJUQVJCV[QWTXGKPU UVCPFQWVKPCHGYOKPWVGUDWVPQVUQVKIJVVJCV [QWECPoVHGGNCRWNUGCVVJGKPUKFGGNDQY5SWGG\G [QWTÆ‚PIGTUKPCPFQWVYKVJYKVJQWVCURQPIGDCNN WPVKN[QWTCTOIGVUVKTGF.QQUGPVJGVQWTPKSWGV CPFTGUVCNKVVNGVJGPTGRGCVVJKUGZGTEKUGCICKP+H [QWFQVJKUHTGSWGPVN[CVNGCUVVYKEGCFC[KVYKNN KORTQXG[QWTXGKPU
9JGP[QWFQVJGUGGZGTEKUGU[QWTOWUENGUVKIJVGP ENCORKPIQHHXGKPUVJCVTWPVJTQWIJVJGO6JKUOCMGUCNN VJGDNQQFVJCVƃQYUKPVQVJGCTOTGVWTPVJTQWIJUWTHCEG XGKPU6JKUECWUGUXGKPUVQDGEQOGNCTIGTCPFUVTQPIGT OCMKPIVJGOGCUKGTVQƂPFCPFWUG
VEIN ROTATION
/GFKEKPGUVJCVCTGIKXGPVJTQWIJXGKPUECPKTTKVCVGVJG YCNNUQHVJGXGKPU%JCPIKPIYJKEJXGKPU[QWWUGECPJGNR FGETGCUGKTTKVCVKQPCPFUECTTKPI 9JGP[QWRWVCPGGFNGKP[QWTUMKPKVNGCXGUCUOCNNJQNG VJCVPGGFUVQJGCN6JGUCOGKUVTWGYKVJ[QWTXGKPU;QW ECPMGGR[QWTXGKPUKPIQQFUJCRGKH[QWNGVVJGOJGCN DGHQTG[QWWUGVJGOCICKP+H[QWFQPoVNGV[QWTXGKPUJGCN [QWOC[DGCVTKUMQHEQNNCRUGFXGKPUQTKPHGEVKQPU 4QVCVKPI[QWTXGKPKUQHVGPTGEQOOGPFGFYJGTG[QWNGV QPGURQVJGCNYJKNG[QWWUGCPQVJGT#XGKPWUWCNN[VCMGU CEQWRNGQHFC[UVQJGCN+VKUCNUQWUGHWNVQJCXGCDCEMWR XGKPVJCVKUWUGFVQDGKPIKPLGEVGFKPECUG[QWJCXGKUUWGU YKVJ[QWTTGIWNCTXGKP TIPS FOR TREATMENT
What can you do to make things go more smoothly when you need treatment? 6JGHQNNQYKPICTGVKRUCPFVTKEMUYJKEJOC[JGNR[QW r
Cleans#NYC[UYCUJ[QWTJCPFUDGHQTG[QWUVCTVCPF JCXGCENGCPCTGCVQOCMGWRCPFIKXG[QWTHCEVQT
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EnvironmentsOCMGUUWTGVJGTGKUIQQFNKIJVKPI YJGTG[QWCTGUKVVKPICPF[QWCTGEQOHQTVCDNGCPF TGNCZGF+H[QWCTGUVTGUUGFQTUECTGFVJGP[QWTXGKPU MPQYVJKUCPFOCMGKVOQTGFKHÆ‚EWNVVQÆ‚PFVJGO 5KVUQOGYJGTGEQOHQTVCDNGCPFKH[QWPGGFVQDG FKUVTCEVGFVWTPQPOWUKEQTVJG686CMGCHGYFGGR DTGCVJUDGHQTG[QWUVCTVKH[QWPGGFVQECNO[QWTUGNH
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ExercisesDGKPIÆ‚VCPFJGCNVJ[OGCPU[QWYKNNJCXG DGVVGTXGKPU#JGCNVJ[YGKIJVTCPIGCNUQOCMGUKV GCUKGTVQÆ‚PFCPFHGGN[QWTXGKPU,WUVDGHQTG[QWJCXG [QWTHCEVQTFQKPICSWKEMTQWPFQHGZGTEKUGUWEJCU TWPPKPIQPVJGURQVQTUVCTLWORUYKNNJGNRIGV[QWT DNQQFRWORKPICPFOCMGÆ‚PFKPI[QWTXGKPUGCUKGT
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+VKUDGVVGTVQWUGCplump bouncy veinVJCV[QWECP HGGNVJCPCXGKP[QWECPQPN[UGG+HCXGKPKURNWORCPF DQWPE[KVYKNNDGGCUKGTVQCEEGUUVJCPCXGKPVJCVKU XKUKDNGDWVƃCV6CMG[QWTVKOGVQHGGNCPFIGVVQMPQY [QWTXGKPUCPFVJGFKTGEVKQPVJG[CTGTWPPKPI
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PositionsOCMGUWTG[QWJCXG[QWTCTODGNQYVJG NGXGNQH[QWTJGCTV&CPINKPI[QWTCTOQXGTVJGGFIG QHVJGDGFEJCKTDGHQTG[QWCEEGUU[QWTXGKPUYKNNCNNQY ITCXKV[VQKPETGCUGDNQQFƃQYVQVJGCTGCCPFVJGXGKP #HVGTCRRN[KPIVJGVQWTPKSWGVUSWGG\GCTWDDGTDCNN QTOCMGCƂUVQTƃCR[QWTCTOUWRCPFFQYPVQJGNR KPETGCUGDNQQFƃQY
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Pain relief sWUKPICPCGUVJGVKEnPWODKPIoETGCOU 4GOGODGTVQTGOQXGCPFENGCPVJGCTGCYGNN(KPFKPI VJGXGKPUKUGCUKGTKHVJGETGCOJCUDGGPTGOQXGFHQT CTQWPFOKPUDGHQTGVT[KPIVQWUGVJGXGKP
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Avoid pressureQPVJGPGGFNGKPUGTVKQPUKVGFWTKPI CPKPHWUKQPQTYJGPVCMKPIVJGPGGFNGQWV4GOGODGT VQTGNGCUGVJGVQWTPKSWGVDGHQTG[QWUVCTVKPHWUKPI [QWTHCEVQT
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Apply pressureCHVGTVJGPGGFNGKUTGOQXGFVQOCMG UWTGVJGDNGGFKPIJCUUVQRRGF+H[QWFQPQVCRRN[ CFGSWCVGRTGUUWTGHQTNQPIGPQWIJVJGP[QWOC[IGV CDTWKUGQXGTVJGXGKPOCMKPIKVFKHÆ‚EWNVVQHGGNYJGP [QWPGZVPGGFVQWUGKV7UKPICRTGUUWTGDCPFCKFYKNN JGNRRTGXGPVDTWKUKPI.QQMKPICHVGT[QWTXGKPOCMGUKV OWEJGCUKGTVQÆ‚PFVJGPGZVVKOG[QWPGGFVTGCVOGPV
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Rotate vein sitesCUPGGFGFs[QWOC[PQVPGGFVQFQ VJKUDWVKH[QWCTGJCXKPIRTQDNGOUYKVJVJGXGKPKVKU CNYC[UIQQFVQJCXGCPCNVGTPCVKXGVQWUG
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+H[QWPGGFCblood testsCUMVJGJGCNVJRTQHGUUKQPCN [QWCTGUGGKPIKH[QWECPCEEGUU[QWTXGKP[QWTUGNHQTKH VJG[EQWNFWUGCFKHHGTGPVXGKPVQ[QWTTGIWNCTXGKP
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Ask for helpsUQOGVKOGU[QWYKNNJCXGRTQDNGOU FGURKVG[QWTDGUVGHHQTVU4GOGODGTKVKUQMVQCUMHQT JGNRKH[QWCTGJCXKPIRTQDNGOU
(QTOQTGKPHQTOCVKQPCDQWVNQQMKPICHVGT[QWTXGKPU VCNMVQVJGJCGOQRJKNKCPWTUGCV[QWT*CGOQRJKNKC 6TGCVOGPV%GPVTG
#WDWTP/E+PV[TGKUVJG*CGOQRJKNKC2J[UKQVJGTCRKUVCVVJG9QOGPoU%JKNFTGPoU*QURKVCN#FGNCKFG
WHY IS MY CHILD LIMPING? 9JGP[QWTEJKNFoULQKPVCPFOWUENGRCKPKUPQVCDNGGF Auburn McIntyre
+PVJKUCTVKENGYGYKNNDGNQQMKPICVRCTVKEWNCT OWUEWNQUMGNGVCNOCVVGTUVJCVECPQEEWTKPCNNEJKNFTGP CPFCFQNGUEGPVUPQVLWUVVJQUGYKVJJCGOQRJKNKC6JGUG EQPFKVKQPUECPPQVQEEWTQPEG[QWDGEQOGCPCFWNVCUVJG[ TGNCVGVQITQYVJCPFITQYKPIDQPGUCPFOWUENGU BONES
%JKNFTGPoUDQPGUCTGUQHVGTCPFOQTGRNKCDNGVJCPCFWNV DQPGU#UCTGUWNVVJGDQPGUQH[QWPIGTRGQRNGECPDGPF CPFEJKNFTGPJCXGpITGGPUVKEMHTCEVWTGUqUQOGVJKPICFWNVU ECPPQNQPIGTJCXG#NKVVNGNKMGC[QWPIVTGGVJGDCTMECP RGGNFQYPTCVJGTVJCPENGCPN[UPCR 5GEQPFN[VJGNQPIDQPGU GIVJGVJKIJUJKPCPFCTO DQPGU JCXGITQYVJRNCVGUCVDQVJGPFU6JGNQPIDQPGU DGEQOGNQPIGTCPFYKFGTYKVJITQYVJ6JGDQPGUQHVJG NQYGTNGIITQYOQUVPQVKEGCDN[CTQWPFVJGMPGG 5QOGDQPGUNKMGVJGRGNXKUMPGGCPFJGGNDQPGUJCXG URGEKCNITQYVJRNCVGCTGCUYJGTGUVTQPIOWUENGUCPF NKICOGPVUCVVCEJECNNGFCPpCRQRJ[UKUq6JGITQYVJRNCVGU CTGYGCMGTVJCPVJGNKICOGPVU1EECUKQPCNN[CUVTQPIHQTEG ECPRWNNUVTQPIN[CVVJGCPEJQTRQKPVECWUKPIRCKPUYGNNKPI CPFYGCMPGUU6JKUUCXGUVJGNKICOGPVCPFOWUENGHTQO DGKPIFCOCIGFDWVKURCKPHWNCPFECWUGUYGCMPGUUQHVJG OWUENG#RQRJ[UKVKUUKVGUCTGFKUEWUUGFCNKVVNGNCVGT
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MUSCLES
14
5VTQPIUMGNGVCNOWUENGUCTGGUUGPVKCNHQTIQQFOQXGOGPV 2QQTOWUENGFGXGNQROGPVCPFRQQTÆ‚VPGUUKUCUUQEKCVGF YKVJRQQTGTNQPIVGTOJGCNVJ+VKUPQVRQUUKDNGVQDWNM OWUENGUWPVKNRWDGTV[JGPEGKVKUTGEQOOGPFGFHTGG YGKIJVUCPFCXCTKGV[QHCEVKXKVKGUTCVJGTVJCPOCEJKPGUCPF URGEKCNK\GFURQTVUCTGGORNQ[GFRTKQTVQRWDGTV[ CRRTQZ [GCTU #ITGCVXCTKGV[QHCEVKXKVKGUGUVCDNKUJGUVJG HTCOGYQTMHQTIQQFUVTQPIOWUENGÆ‚DTGFGXGNQROGPV 'FWECVKQPCPFCYCTGPGUUQHITQYVJURWTVUKUKORQTVCPV CUÆ‚VPGUUKUPGGFGFHQTNQPIVGTOJGCNVJ)CKPKPIUMKNNU VJTQWIJCXCTKGV[QHURQTVUDGHQTGCEJKNFKU[GCTUQNF JGNRUUMKNNUCPFYQTMUCNNOWUENGU+VKUKORQTVCPVVQDG CYCTGQHITQYVJURWTVUDWVPQVYQTT[CDQWVVJGO
6GNN[QWTRJ[UKQVJGTCRKUVCPFFQEVQTKH[QWTEJKNFKU ITQYKPITCRKFN[ 9QTMNKHGRTGUUWTGUECPOGCPKVKUFKHÆ‚EWNVHQTRCTGPVU VQRTQXKFGVJGKTEJKNFYKVJCNCTIGXCTKGV[QHCEVKXKVKGU DWVXCTKGV[GPJCPEGUUVTQPIFGXGNQROGPVQHOCP[NGI CTOCPFVTWPMOWUENGUCPFCUUKUVUVJGDQF[VQFGXGNQR EQQTFKPCVKQPDCNCPEGCPFUVTGPIVJ GROWTH SPURTS
Adults shrink, only children grow. #ITQYVJURWTVCTQWPF[GCTUKPDQ[URQUGU UQOGTKUMUVQEJKNFTGPCPFCFQNGUEGPVUCUDQPGUITQY CVFKHHGTGPVTCVGUVQOWUENGU6JGGCTN[RCTVQHCRTG RWDGTVCNITQYVJURWTVKUOCTMGFD[TCRKFITQYVJQH VJGNGIU6JGFKHHGTGPEGDGVYGGPVJGDQPGCPFOWUENG ITQYVJECPETGCVGRTQDNGOUYKVJIGPGTCNƃGZKDKNKV[EQ QTFKPCVKQPOWUENGRQYGTCPFUVTGPIVJ Children and adolescents can become clumsy during periods of growth. They are more at risk of injury. /GEJCPKECNUVTGUU VTCEVKQPKPIRWNNKPICPFVWIIKPI QHVGPFWGVQQXGTWUGD[VTCKPKPIVJGUCOGOWUENGU VQQHTGSWGPVN[ECPECWUGQXGTWUGRCKP6JKUKUECNNGF traction apophysitisCPFECPQEEWTCVUKVGUEQOOQPN[ CHHGEVGFD[JCGOQRJKNKCUWEJCUVJGGNDQYCPMNGCPF MPGG#UWFFGPUVTQPICPFHQTEGHWNCEVKQPQHCOWUENG VJCVCVVCEJGUVQVJGUQHVCTGCQHVJGITQYVJRNCVGOC[ ECWUGVJCVCVVCEJOGPVCTGCVQRWNNQHHEQORNGVGN[6JKU KUMPQYPCUCPavulsion fracture. +PVJGRGNXKECTGCVJKUECPDGYJGPOWUENGUQHVJG VTWPMCVVCEJCVVJGKNKCEETGUV+HVJG[CTGQXGTYQTMGFQT YQTMGFUWFFGPN[RCKPECPQEEWTCNQPIVJKUCTGC6JG +UEJKCNVWDGTQUKV[JCUVJGJCOUVTKPIOWUENGUCVVCEJGF VQKV1XGTUVTGVEJKPIQTCUWFFGPOQXGOGPVCICKPUV HQTEGECPECWUGCPCXWNUKQPHTCEVWTG
2J[UKQVJGTCRKUVUQHVGPYCPVVQMPQYpJQYVJGKPLWT[ JCRRGPGFqCPFpYJCVYJGTG[QWFQKPIYJGPeq6JKU is to try and determine if the sudden pain is a bleed QTUQOGVJKPIGNUG5QOGVKOGU:TC[UCTGTGSWKTGFVQ FGVGTOKPGKHVJGRCKPKUFWGVQCHTCEVWTG/CP[VJKPIU ECPECWUGRCKPPQVLWUVCDNGGF #VVJGMPGGVJGTGCTGVYQEQOOQPUKVGUVJCVECP DGEQOGUQTGCPFRCKPHWN6JGPCOGUCVVCEJGFVQVJGUG KPLWTKGUCTG1UIQQF5EJNCVVGTFKUGCUGCPF5KPFKPI .CTUGPFKUGCUG6JG[CTGNQECNN[RCKPHWNECPDGUQTG YKVJTWPPKPIYJGPVQWEJGFCPFYQTMKPIVJGSWCFU
SWCFTKEGRUHGOQTKU OWUENGU6JGUGKPLWTKGUCTGWUWCNN[ FWGVQQXGTWUGCPFVKIJVOWUENGU &QYPCVVJGHQQVVJGJGGNTGCEVUVQVKIJVECNHOWUENGU RWNNKPIQPDQPGHQTGZCORNGYKVJTWPPKPILWORKPI QTGXGPYCNMKPI6JKUECPTGUWNVKPRCKPUYGNNKPICPFKU QHVGPYQTUGCHVGTTGUVCICKPWUWCNN[YJGPOWUENGUCTG VKIJVRWNNKPICPFVWIIKPIQEEWTU.QECNRCKPUQOGVKOGU UVKHHPGUUCPFUYGNNKPIECPTGUWNV
Children with suspected bleeds should always be reviewed. Growth spurts are times when other issues arise and proper assessment is critical. True joint bleeds improve with factor replacement therapy. They require proper PRICE (Protection Rest Ice Compression Elevation) and rehabilitation afterwards to KORTQXGVJGOWUENGRQYGTUVTGPIVJCPFƃGZKDKNKV[VJCV is always lost after a bleed. #RGTKQFQHTGNCVKXGTGUVCPFURGEKƂEGZGTEKUGUCTG TGSWKTGFHQTCRQRJ[UKVKUCPFITQYVJRNCVGKPLWTKGU 6JG[OC[GXGPTGSWKTGCPQTVJQRCGFKETGXKGY CPFCP:TC[ CHILDHOOD HIP ISSUES
1VJGTVJCPRUQCUOWUENGDNGGFUVJGJKRTGIKQP KUEQOOQPN[NGUURTQDNGOCVKEHQTRGQRNGYKVJ JCGOQRJKNKC#DNGGFKPVQVJGCPMNGMPGGQTGNDQY KUOWEJOQTGRTQDNGOCVKE *QYGXGTKPEJKNFTGPVJGJKRTGIKQPECPDGCUKVGQH QVJGTOWUEWNQUMGNGVCNKUUWGU +PHGEVKQPUECPQEEWTKPVJKUCTGCCPFCNUQKPQVJGT LQKPVU6JKUOC[DGCHVGTCXKTCNKNNPGUUUWEJCUCEQNF QTGCTKPHGEVKQPQTGXGPCTGEGPVQRGPYQWPF#EJKNF OKIJVNKORQTEQORNCKPQHITQKPQTMPGGRCKPCPFJCXG TGUVTKEVGFOQXGOGPVU%QOOQPN[VJG[GCTQNFCIG ITQWRKUCHHGEVGF#FWNVUECPCNUQIGVLQKPVKPHGEVKQPU DWVOCP[V[RGUYCTGOQTGEQOOQPKPEJKNFTGP
6JGCDQXGKPLWTKGUTGNCVGVQVKIJVOWUENGURWNNKPIQP UQHVGTDQP[ITQYVJRNCVGUFWTKPICRGTKQFQHITQYVJ QTCUWFFGPCEVKQPQHVJGOWUENGYJKEJECPRWNNVJG UQHVDQPGQHHKVUJCTFGTDCUG6JG[IGPGTCNN[ECWUG NQECNVGPFGTPGUUUYGNNKPIQTRCKPnotYJQNGMPGG Children should never have a temperature or UYGNNKPICUKPCDNGGFHQTGZCORNGCNQECNCTGCQHRCKP be unwell with a haemophilic bleed. CVVJGJGGNQTWPFGTVJGCTEJnotVJGYJQNGCPMNG6JG[ ECPJWTVCPFNGCFVQ[QWDGKPIWPCDNGVQNKHVCNGIQT $Q[U[GCTUQNFCTGOQTGNKMGN[VJCPCIKTNVQ YCNM6JG[TGSWKTGRTQRGTCUUGUUOGPV FGXGNQRCUNKRQHRCTVQHVJGJKRDQPG Cslipped upper capital femoral epiphysis 6JKUECPQEEWTUWFFGPN[ (CEVQTTGRNCEGOGPVVJGTCR[OC[OCMGUQOG FKHHGTGPEG FWGVQRGTJCRUUQOGDNGGFKPIQHVJGDQF[ CPFVJG[YKNNJCXGCSWKEMQPUGVQHRCKPCPFNQUUQH OQXGOGPVCPFHWPEVKQPQTKVECPQEEWTITCFWCNN[ RCTVKPXQNXGFDWVKVYKNNPQVDGVJGUCOGCUKPCDNGGF QXGTVKOG$QVJTGUWNVKPTGUVTKEVGFJKROQXGOGPVU VQCLQKPVQTOWUENG6JGRTQDNGOYKNNTGQEEWTCPFPQV 5QOGVKOGUVJGNGIOC[CRRGCTUJQTVGTCPFVJGEJKNF UGVVNGYKVJTGWUG
N a t i o n a l H a e m o p h i l i a N o . 2 0 2 , Ju n e 2 0 1 8
6JGCPVGTKQTUWRGTKQTKNKCEURKPGJCUVJGUCTVQTKWU OWUENGCJKRNKHVKPI ƃGZQT CPFVWTPKPIOWUENGYJKEJ ECPCNUQFGVCEJRCTVQHVJGDQPGYJGPVJGNGIMKEMUC JGCX[YGVDCNNQTVJGJCTFITQWPF
15
YKNNNKOR6JGTGKUCJGKIJVGPGFTKUMKHEJKNFTGPCTG QXGTYGKIJV6TGCVOGPVKUIGPGTCNN[UWTIKECN Some children will complain of knee pain when the problem is actually in the hip joint. Both joints should always be checked. $Q[U[GCTUQNFOQTGVJCPIKTNUECPFGXGNQR2GTVJGU CPQVJGTJKREQPFKVKQPYKVJNKORKPIRGTUKUVGPVRCKPCPF TGUVTKEVGFJKROQXGOGPVU2GTVJGUQHVGPQEEWTUITCFWCNN[ If a child has a slipped upper capital femoral epiphysis or Perthes, they will not respond to factor replacement therapy. If they have a bleed, children should always improve and continue to improve if given factor. FEET
(NCVHGGVYJKEJCTGPQTOCNKPEJKNFTGPWPVKNCTQWPF [GCTUECPUQOGVKOGUNGCFVQUVKHHHGGVKPCFQNGUEGPEG9J[ VJKUQEEWTUKPWPMPQYPCPFKVKUPQVEQOOQP9JGPCUMGF VQUVCPFQPVKRVQGUEJKNFTGPYKVJUVKHHHGGVFQPoVUJQYVJG PCVWTCNCTEJVJCVOQUVRGQRNGIGV#PQTVJQRCGFKETGXKGY OC[DGTGSWKTGFKHVJGKTHGGVCTGECWUKPIRTQDNGOUJCXG ECNNWUGUGVE
5EQNKQUKU
SPINES
N a t i o n a l H a e m o p h i l i a N o . 2 0 2 , Ju n e 2 0 1 8
%JKNFTGPoUURKPGUCTGITQYKPIUQRQUVWTGKUEQPUVCPVN[ EJCPIKPI/QTGIKTNUVJCPDQ[UFGXGNQRCUKFGYC[UEWTXG KPVJGKTURKPGECNNGFCUEQNKQUKUDWVDQ[UECPDGEQOGXGT[ TQWPFUJQWNFGTGFQTM[RJQVKE6JG[ECPCNUQFGXGNQRC UEQNKQUKU6JGUGURKPGEQPFKVKQPUOC[DGEQOGRTQDNGOCVKE KHVJG[EQPVKPWGVQFGXGNQRYKVJITQYVJ1HVGPVJG[CTG JKFFGPWPFGTENQVJGUUQJCXGCNQQMCV[QWTEJKNFoUURKPG KPUWOOGTYJGPVJG[CTGNGUUNKMGN[VQJCXGUQOCP[VJKEM layers on.
16
IN SUMMARY
'PLQ[YCVEJKPI[QWTEJKNFITQY+VoUCPCOC\KPIRTQEGUU HWNNQHLQ[UCUVJG[DGEQOGDGVVGTCVUMKNNUCPFEQPSWGTPGY CEVKXKVKGU $GCYCTGVJCVCNNCEJGUCPFRCKPUOC[PQVDGDNGGFU6CMG PQVGQHVJGDNWGCNGTVDQZGUee Contact your HTC if the “pattern� of the problem is different to a normal bleed or if the problem doesn’t settle or if the problem reoccurs. Act, don’t wait!
.QTGVVC4KNG[KU#FXCPEGF5QEKCN9QTMGTCVVJG3WGGPUNCPF *CGOQRJKNKC%GPVTG4Q[CN$TKUDCPGCPF9QOGPoU*QURKVCN
Loretta Riley
$GHQTG+UJCTGO[NGCTPKPIUHQTVJQUGYJQOC[ DGWPUWTGQHYJCVnVTCPUKVKQPoKUsKVKUCITCFWCN EQQTFKPCVGFRTQEGUUYJKEJKPXQNXGUC[QWPIRGTUQP VJGKTHCOKNKGUQTECTGTUCPFJGCNVJRTQHGUUKQPCNUYJKEJ TGUWNVUKPC[QWPIRGTUQPoUECTGDGKPIVTCPUHGTTGFVQ KP QWTUKVWCVKQP VJGCFWNV*CGOQRJKNKC6TGCVOGPV%GPVTG BE PREPARED OR PLAN AHEAD
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
2NCPPKPICJGCFCNNQYU[QWVQRTCEVKEGUQOGVJKPIU DGHQTG[QWTECTGOQXGUVQVJGCFWNVJQURKVCN;QW ECPRTCEVKEGDGKPIRTGRCTGFHQT[QWTCRRQKPVOGPVU HQTGZCORNGJCXKPICNN[QWTKPHQTOCVKQPWRVQFCVG KP/[#$&4$[JCXKPICNKUVQHSWGUVKQPUVQCUMQT VJKPIUVQTGOGODGTVJCV[QWVCMGYKVJ[QWVQ[QWT CRRQKPVOGPVUKVECPJGNRYKVJTGOGODGTKPIVJKPIU that happen months earlier and may also help you to HGGNOQTGEQPÆ‚FGPV6JGUGCTGUQOGVJKPIU[QWECP RTCEVKEGKPVJG[GCTUDGHQTG[QWVTCPUKVKQPVQVJGCFWNV %GPVTGCPFYKNNJGNR[QWKP[QWTENKPKECRRQKPVOGPVU 5QOG*CGOQRJKNKC6TGCVOGPV%GPVTGUCETQUU#WUVTCNKC JCXGCUJCTGFENKPKEQPEGC[GCTYJGTG[QWIGVVQIQVQ VJGCFWNVJQURKVCNCPFOGGVVJGCFWNV%GPVTGUVCHHYKVJ VJGRCGFKCVTKE%GPVTGUVCHHVJGTGCVVJGENKPKEQT[QW OKIJVIQVQCFC[QTPKIJVGXGPVYJGTG[QWOGGVVJG CFWNV%GPVTGUVCHHCPFOC[DGIGVCVQWTQHVJGJQURKVCN #NNQHVJKUJGNRU[QWYKVJRTGRCTKPIHQTVJGVTCPUKVKQPVQ the adult hospital. SET GOALS
+PVTCPUKVKQPCUKPOCP[CTGCUQHNKHGKVKUJGNRHWNVQUGV IQCNUCPF[QWECPFQVJKUGCTN[CUYGNN6JGTGKUPQ PGGFVQUGVCNQVQHIQCNUVQCEJKGXGDGHQTG[QWVWTP sUQOG[QWYKNNCNTGCF[DGYQTMKPIQPUQOG[QW ECPMGGRYQTMKPIQPYJGP[QWVTCPUKVKQPCETQUUVQ VJGCFWNV%GPVTG+PYTKVKPIDQQMNGVUVJKUCTVKENGKPO[ YQTMKVJCUJGNRGFOGVQOGGVVKOGNKPGUGURGEKCNN[ YJGP+COHGGNKPICNKVVNGQXGTYJGNOGF +VYQTMUDGUVYJGP+DTGCMVJGIQCNUKPVQUOCNNGT IQCNUYJKEJCTGOQTGOCPCIGCDNG;QWOC[JCXG JGCTFQH5/#46IQCNU)QCNUYQTMOQTGGHHGEVKXGN[
N a t i o n a l H a e m o p h i l i a N o . 2 0 2 , Ju n e 2 0 1 8
+COKPVJGRTQEGUUQHYTKVKPICDQQMNGVHQT[QWPI CFWNVUYJQJCXGVTCPUHGTTGFVQVJG4Q[CN$TKUDCPGCPF 9QOGPoU*QURKVCN9JGP+YCUCUMGFVQWVKNKUGVJKU MPQYNGFIGVQYTKVGCPCTVKENGHQTNational Haemophilia, CEQNNGCIWGQHOKPGCVVJG.CF[%KNGPVQ%JKNFTGPoU *QURKVCNCUMGFOGYJGVJGT+PQVKEGFCP[RCTCNNGNU DGVYGGPYTKVKPIVJKUDQQMNGVCPFVJGRTQEGUUQH VTCPUKVKQP#HVGTVJKPMKPICDQWVKVHQTCYJKNG+TGCNKUGF VJCVVJGTGYCU
17
YJGPVJG[CTG5RGEKÆ‚E Measurable, Achievable, Relevant/Realistic and Time Bound5QHQTYTKVKPIVJG VTCPUKVKQPDQQMNGV+JCFCITCPFRNCPVQJCXGVJGDQQMNGV EQORNGVGFRTKPVGFCPFUGPVQWVD[,CPWCT[ +UVCTVGF KVKPNCVG5GRVGODGT 6JKUYCUPoVTGCNKUVKEKPVJGGPF+ FKFPoVHCEVQTKPCNNVJGGZVTCTGUGCTEJ+PGGFGFVQFQQTVJG RTQEGUUGUKPXQNXGFKPJCXKPIKVTGXKGYGF+CNUQFKFPoVJCXG WPKPVGTTWRVGFVKOGs+JCFVQMGGRFQKPICNNVJGQVJGTDKVU QHO[LQD5Q+TGXKGYGFO[IQCNUÆ‚ZGFWRO[VKOGHTCOGU CPFNQQMGFCVKVOQTGTGCNKUVKECNN[9GWPFGTUVCPFVJCV UQOGVKOGUVJKPIUJCRRGPDG[QPF[QWTEQPVTQN
RNCPPGFVQFQUQ+JCXGCPWODGTQHUVTCVGIKGUVQ JGNR+PYTKVKPIVJGDQQMNGV+DQQMGFCRRQKPVOGPVU KPVQO[ECNGPFCTYTQVGO[UGNHnVQFQNKUVUoCPFVKEMGF VJGOQHHYJGP+EQORNGVGFGCEJVCUM+CNUQWUGFRQUVKV PQVGU YJKEJYGTGJGNRHWNYJGPVJG[UVC[GFYJGTGVJG[ YGTGUWRRQUGFVQ 6JGUCOGKFGCUECPDGCRRNKGFVQ RTGRCTKPIHQTVTCPUKVKQPCPFDG[QPF
N a t i o n a l H a e m o p h i l i a N o . 2 0 2 , Ju n e 2 0 1 8
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r 5RGEKƂEs+YKNNCUMVJGRCGFKCVTKE%GPVTG UQOGVQQNUVQJGNR[QWYKVJUVWF[TGOGODGTYJGP[QW FQEVQTQPGSWGUVKQP PGGFVQFQ[QWTRCTVVKOGLQDQTYJGTGCPFYJGP[QWT URQTVƂZVWTGUCTGJCRRGPKPI#PWODGTQHVJGVJKPIU[QW r Measurable+YKNNFQKVCVO[PGZVENKPKE FQVQJGNR[QWTGOGODGTVJGUGVJKPIUECPDGWUGFVQ CRRQKPVOGPVCVVJG%JKNFTGPoU*QURKVCN JGNRTGOGODGT[QWTCRRQKPVOGPVUCPFQVJGTVCUMU[QW FQVQNQQMCHVGT[QWTJGCNVJ r AchievablesKVKUUQOGVJKPI+ECPFQ+YKNN YTKVGVJGSWGUVKQPFQYPCPFVCMGKVYKVJOG YOU DON’T HAVE TO GET IT 100% KPECUG+IGVPGTXQWU
18
r
Relevant/Realistic6JGFQEVQTCNYC[UCUMUKH+JCXG CSWGUVKQPCPFVCMKPIVJKUUVGRYKNNJGNROGHGGNOQTG EQPÆ‚FGPVVCNMKPIVQVJGFQEVQTQPO[QYP
r
Time bound +JCXGCPCRRQKPVOGPV KPYGGMUUQ+ECPFQKVVJGP
+VCNUQOC[JGNRKH[QWCTGRCTVKEWNCTN[ PGTXQWUVQRTCEVKEGYKVJCHCOKN[OGODGT REMEMBERING TO DO WHAT YOU PLANNED TO DO
+WUWCNN[JCXGCPWODGTQHRTQLGEVURJQPGECNNU CRRQKPVOGPVUVQFQCNNKPVJGUCOGYGGMQTGXGPUCOG FC[5QOGVKOGU+HQTIGVVQFQUQOGVJKPIUVJCV+JCF
CORRECT THE FIRST (OR SECOND) TIME
+VVQQMOGCHGYIQGUCVYTKVKPIVJGDQQMNGVVQIGVKVVQC RQKPVYJGTG+YCUJCRR[YKVJKVCPFVJCVYCUGXGPDGHQTG+ UJQYGFCP[QPGGNUG6JGTGYGTGVJKPIU+HQTIQVVQCFFKP UQOGVJKPIUEJCPIGFYJKNG+YCUYTKVKPIKVCPF+HQTIQVVQ VCMGVJGOQWV1VJGTRGQRNGCTGPQYTGCFKPIKVCPFVJG[ JCXGUWIIGUVKQPUVQOCMGKVGXGPDGVVGT +VKUVJGUCOGKPVTCPUKVKQP;QWOC[PGGFVQRTCEVKEG VJKPIUCHGYVKOGU UQOGVKOGUOCP[VKOGU DGHQTG[QWHGGN EQPÆ‚FGPV6JGUVCHHCV*CGOQRJKNKC6TGCVOGPV%GPVTGU WPFGTUVCPFVJCV[QWCTGNGCTPKPI9GCNNOCMGOKUVCMGU YGCNNJCXGVKOGUYJGPYGHQTIGVVQCUMQTVGNNQWTFQEVQT PWTUGRJ[UKQVJGTCRKUVUQEKCNYQTMGTRU[EJQNQIKUV EQWPUGNNQTUQOGVJKPIsCPFYGWUWCNN[TGOGODGTKVCU
OK
+6o5 61 ASK FOR HELP IT’S OK TO ASK FOR HELP
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2018 GO FOR IT GRANTS 'XGT[QPGGZRGTKGPEGUQDUVCENGUCVUQOG VKOGDWV[QWoNNPGXGTMPQYYJCV[QWECP QXGTEQOGCPFCEJKGXGWPNGUU[QWGo for it! 6JG*CGOQRJKNKC(QWPFCVKQP#WUVTCNKCoU Go for it GrantsRTQITCOKUQRGPHQT CRRNKECVKQPU
Training Study
Conferences
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Go for it Grants
WHO CAN APPLY?
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NEW ABOUT BLEEDING DISORDERS BROCHURE 'XGTYCPVGFCUKORNGDTQEJWTGCDQWVDNGGFKPIFKUQTFGTU TUUU VQUJQYRGQRNGCVCHWPFTCKUGTQTRGQRNGKPVJGIGPGTCN TC CN EQOOWPKV[YJQCTGKPVGTGUVGF! Ɛ
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WHY MEET THE DISABILITY TEAM?
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STARTING HIGHER EDUCATION
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PEER EDUCATION
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CALENDAR Bleeding Disorders Awareness Week 1EVQDGT 6GN (CZ 'OCKN JHCWUV"JCGOQRJKNKCQTICW YYYJCGOQRJKNKCQTICW World Haemophilia Day 17 April 2019 YYYYHJQTIYJF
ACKNOWLEDGEMENTS *CGOQRJKNKC(QWPFCVKQP#WUVTCNKC *(# CEMPQYNGFIGUHWPFKPI ITCPVUTGEGKXGFHTQOVJG#WUVTCNKCP)QXGTPOGPV&GRCTVOGPVQH *GCNVJHQTEQOOWPKECVKQPUCPFGFWECVKQPCEVKXKVKGUWPFGTVCMGP D[VJG*(#UGETGVCTKCV 9GVJCPMVJGKPFKXKFWCNURJKNCPVJTQRKEVTWUVUCPFEQORCPKGUYJKEJJCXG OCFGFQPCVKQPUVQUWRRQTV*(#RTQITCOUCPFVJGHQNNQYKPIEQORCPKGU VJCVURQPUQTGFWECVKQPRTQITCOUEQPHGTGPEGUQTRGGTUWRRQTVRTQITCOU TWPD[VJG(QWPFCVKQPHQTVJGDNGGFKPIFKUQTFGTUEQOOWPKV[
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NATIONAL HAEMOPHILIA is a publication of Haemophilia Foundation Australia. Every effort is taken to ensure accurate and relevant content, ÜiÛiÀ«ÃiÝ«ÀiÃÃi` Ƃ/" Ƃ Ƃ "* Ƃ`ÌiViÃÃ>ÀÞÀiyiVÌÌ ÃivÌ iÕ`>ÌÀÌ ii`ÌÀ]ÀÃ>ÞvÀ>Ì Ìi`i`ÌÌ>iÌ i«>Viv>`ÛVivÀ>µÕ>wi`i`V>«À>VÌÌiÀÀ i>Ì «ÀviÃÃ>° Haemophilia Foundation Australia does not endorse or assure the products, programs or services featured in Ƃ/" Ƃ Ƃ "* Ƃ>``iÃÌ>iëiVwVÀiVi`>ÌÃvÀ>Þ«À`ÕVÌÃ]«À}À>ÃÀÃiÀÛVið We welcome reproduction of articles or quotations from NATIONAL HAEMOPHILIA on the understanding that acknowledgement is made of NATIONAL HAEMOPHILIA as the source.
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