Page 1

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

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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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N a ti ona l H a em ophi l i a N o. 20 2, Ju ne 2 0 1 8

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 RTQLGEV6JGRTQLGEVKUFGXGNQRKPIURGEKÆ‚EKPHQTOCVKQP TGUQWTEGUHQT#WUVTCNKCPYQOGPCPFIKTNUCHHGEVGFD[ DNGGFKPIFKUQTFGTUVQ r

Increase their understanding of their bleeding disorder,VTGCVOGPVUCPFUVTCVGIKGUVQOCPCIGKV

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(QTVJGUGYQOGPHGGNKPIUQHKUQNCVKQPCTGEQOOQP1,2 WHO COMPLETED THE SURVEY?

37RGQRNGEQORNGVGFVJGUWTXG[ 29 female, 8 male

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BLEEDING DISORDER THAT APPLIES TO YOUR SITUATION

r r

70%

r 60%

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50%

40%

30%

20%

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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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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

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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`“iœ˜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.’

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‘The desire to educate more family members/well wishers/school educators.’

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WOMEN AND P Cheryl Ellis

PEER SUPPORT FOR WOMEN IN A LOCAL CONTEXT

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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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OTHER OPPORTUNITIES TO CONNECT

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WOMEN’S GROUP MEETINGS

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LOOKING AFTER YOUR VEINS Robyn Shoemark and Helen Starosta

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How do these exercises improve your veins?

WHAT ARE VEINS?

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2.

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VEIN ROTATION

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What can you do to make things go more smoothly when you need treatment? 6JGHQNNQYKPICTGVKRUCPFVTKEMUYJKEJOC[JGNR[QW r

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WHY IS MY CHILD LIMPING? 9JGP[QWTEJKNFoULQKPVCPFOWUENGRCKPKUPQVCDNGGF Auburn McIntyre

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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

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

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 $Q[U[GCTUQNFCTGOQTGNKMGN[VJCPCIKTNVQ YCNM6JG[TGSWKTGRTQRGTCUUGUUOGPV FGXGNQRCUNKRQHRCTVQHVJGJKRDQPG Cslipped upper capital femoral epiphysis 6JKUECPQEEWTUWFFGPN[ (CEVQTTGRNCEGOGPVVJGTCR[OC[OCMGUQOG FKHHGTGPEGFWGVQRGTJCRUUQOGDNGGFKPIQHVJGDQF[ CPFVJG[YKNNJCXGCSWKEMQPUGVQHRCKPCPFNQUUQH OQXGOGPVCPFHWPEVKQPQTKVECPQEEWTITCFWCNN[ RCTVKPXQNXGFDWVKVYKNNPQVDGVJGUCOGCUKPCDNGGF QXGTVKOG$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


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+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

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WHO CAN APPLY?

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WHY MEET THE DISABILITY TEAM?

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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

PEER EDUCATION

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CALENDAR Bleeding Disorders Awareness Week 1EVQDGT 6GN (CZ 'OCKNJHCWUV"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, …œÜiÛiÀœ«ˆ˜ˆœ˜ÃiÝ«ÀiÃÃi`ˆ˜ Ƃ/" ƂƂ "*Ƃ`œ˜œÌ˜iViÃÃ>ÀˆÞÀiyiVÌ̅œÃiœv̅iœÕ˜`>̈œ˜œÀ̅ii`ˆÌœÀ]˜œÀˆÃ>˜Þˆ˜vœÀ“>̈œ˜ ˆ˜Ìi˜`i`̜Ì>Ži̅i«>Viœv>`ۈVivÀœ“>µÕ>ˆwi`“i`ˆV>«À>V̈̈œ˜iÀœÀ…i>Ì…«ÀœviÃȜ˜>° Haemophilia Foundation Australia does not endorse or assure the products, programs or services featured in Ƃ/" ƂƂ "*Ƃ>˜``œi؜̓>ŽiëiVˆwVÀiVœ““i˜`>̈œ˜ÃvœÀ>˜Þ«Àœ`ÕVÌÃ]«Àœ}À>“ÃœÀÃiÀۈVið 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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National haemophilia no 202 june 2018 web  
National haemophilia no 202 june 2018 web  
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