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PHYSIOTHERAPY AND QUALITY OF LIFE IN CHILDREN WITH HAEMOPHILIA
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3ULEROQLNLKVKHPR¿OLMR]DUDGLPRWHQMYVWUMHYDQMXNUYLSRJRVWRSULKDMDGRNUYDYLWHYYVNOHSHLQPLãLFH6
¿]LRWHUDSLMRVNXãDPR]PDQMãDWLSRVOHGLFHNUYDYLWHYYVNOHSHLQPLãLFHWHUSUHSUHþHYDWLSRQRYQHNUYDYLWYH )L]LRWHUDSHYWVNRREUDYQDYRYEROQLãQLFLL]YDMDPRREDNXWQLNUYDYLWYLXVPHULPRSDVHQDSUL]DGHWLVNOHS DOLPLãLFR$PEXODQWQDREUDYQDYDMHQDPHQMHQDY]GUåHYDQMXJLEOMLYRVWLYVHKVNOHSRYLQNUHSLWYLPLãLþQLK VNXSLQ3ULPODMãLKEROQLNLKMHL]UHGQRSRPHPEQR]GUDYVWYHQRY]JRMQRGHORVVWDUãLLQQMLKRYRYNOMXþHYDQMH Y¿]LRWHUDSHYWVNRGHMDYQRVW
5HGQD LQ SUDYLOQD ¿]LRWHUDSLMD ]DJRWDYOMD YHþMR NDNRYRVW åLYOMHQMD RWURN V KHPR¿OLMR LQ MH SRPHPEHQ GHMDYQLNNLYSOLYDQDDNWLYQRYNOMXþHYDQMHYYVDNRGQHYQHGHMDYQRVWLVDPRRVNUERYRGUDVOHPREGREMXLQQD NDNRYRVWQRåLYOMHQMHFHOHGUXåLQH
.OMXþQHEHVHGHKHPR¿OLMDRWURN¿]LRWHUDSLMD
ABSTRACT
Blood coagulation anomalies in patients suffering from haemophilia lead to bleeding into the joints and PXVFOHV7KHUROHRIWKHSK\VLRWKHUDSLVWLVWRUHGXFHWKHFRQVHTXHQFHVRIEOHHGLQJLQWRMRLQWVDQGPXVFOHV and prevent further bleeding.
+RVSLWDOSK\VLRWKHUDS\LVSHUIRUPHGIROORZLQJDFXWHKDHPRUUKDJLQJIRFXVLQJPDLQO\RQWKHDIIHFWHGMRLQW RUPXVFOH7KHDLPRIRXWSDWLHQWWKHUDS\LVWRSUHVHUYHWKHPRELOLW\RIDOOMRLQWVDQGVWUHQJWKHQPXVFOH groups.
,Q\RXQJHUSDWLHQWVKHDOWKHGXFDWLRQIRUSDUHQWVDQGWKHLULQYROYHPHQWLQSK\VLRWKHUDS\DFWLYLWLHVLV H[WUHPHO\LPSRUWDQW
5HJXODUDQGDSSURSULDWHSK\VLRWKHUDS\HQVXUHVDEHWWHUTXDOLW\RIOLIHIRUFKLOGUHQZLWKKDHPRSKLOLD,WLVDQ LPSRUWDQWIDFWRUWRHQDEOHDFWLYHLQWHJUDWLRQLQGDLO\DFWLYLWLHVVHOIFDUHGXULQJDGXOWKRRGDQGDTXDOLW\OLIH IRUWKHZKROHIDPLO\
.H\ZRUGVKDHPRSKLOLDFKLOGSK\VLRWKHUDS\
6ORY3HGLDWU
6ORY3HGLDWU
UVOD
+HPR¿OLMD MH GHGQD PRWQMD Y VWUMHYDQMX NUYL NL VH SRMDYL VNRUDM L]NOMXþQR SUL PRãNLK ]DUDGL SRPDQMNDQMD GRORþHQHJD IDNWRUMD VWUMHYDQMD NUYL 9 WUHWMLQL SULPHURY VH SRMDYL QD QRYR 3UL EROH]QL SULKDMDGRNUYDYLWHYYVNOHSHDOLPLãLFH/DKNRVH SRMDYLMR VSRQWDQR DOL SD VR SRVOHGLFD SRãNRGEH ali operacije. Kako pogosto ima bolnik krvavitve LQ NDNãHQ MH QMLKRY REVHJ MH RGYLVQR RG VWRSQMH KHPR¿OLMH3R]QDPRWHåNRVUHGQMHWHåNRLQODKNR REOLNRKHPR¿OLMH
)L]LRWHUDSLMD MH SUL RWURFLK V KHPR¿OLMR XVPHUMHQD Y RKUDQLWHY þLP YHþMH JLEOMLYRVWL VNOHSRY LQ Y]GUåHYDQMH PLãLþQH PRþL V WHP SD WXGL PRþL VNOHSQLKYH]LOLJDPHQWRY=DWRPRUDPR]DJRWRYLWL GD RWURFL V KHPR¿OLMR åH ]JRGDM Y VYRMH åLYOMHQMH DNWLYQRYNOMXþXMHMRWXGL¿]LRWHUDSLMR
KRVAVITVE V SKLEPE IN MIŠICE
Krvavitev se lahko pojavi v vseh sklepih.
1DMSRJRVWHMãHVRNUYDYLWYHY
UDPHQD
NRPROFH
NRONH
NROHQD
JOHåQMH
.UYDYLWYHYRPHQMHQHVNOHSHVRSRJRVWHMãH]DWRNHU VRWLVNOHSLHQRRVQL7RSRPHQLGDJLEDQMHSRWHND OH Y HQL VPHUL WM XSRJLE LQ L]WHJQLWHY ÀHNVLMD LQ HNVWHQ]LMD 3ROHJ WHJD SD RE QMLK QL SUDNWLþQR QREHQHPLãLFHNLELMLKYDURYDODVDMVHQDKDMDMROH nad sklepom in pod njim. Preko sklepov v glavnem potekajo le kite.
.UYDYLWYH NL VH SRJRVWR SRQDYOMDMR SRY]URþDMR ]PDQMãDQMH JLEOMLYRVWL Y VNOHSLK *RYRULPR R NRQWUDNWXUL DOL ]DNUþHQRVWL =DNUþHQRVW VNOHSD SRY]URþL YHþML SULWLVN QD VNOHSQL KUXVWDQHF LQ QHSUDYLOQR REUHPHQMHYDQMH Y VNOHSLK =DUDGL ]DNUþHQRVWL Y JOHåQMLK LQ NROHQLK VH ODKNR SRMDYL
tudi motena statika pri hrbtenici.
Poleg sklepov lahko krvavitve prizadenejo tudi PLãLFH0LãLFHNL]DNUYDYLMRQDMSRJRVWHMHVR
PLãLFDXSRJLEDONDNRPROFDPELFHSVEUDFKLL
PLãLFDXSRJLEDONDNRONDPLOLRSVRDV
PLãLFDL]WHJRYDONDNROHQDPNYDGULFHSV
PLãLFDXSRJLEDONDNROHQDPELFHSV
PLãLFD L]WHJRYDOND JOHåQMD XSRJLEDOND NROHQD PJDVWURFQHPLXVitd.
=DUDGLQHDNWLYQRVWLYDNXWQLID]LNUYDYLWYHSRVWDQHMR PLãLFHYVHWDQMãHLQPDQMPRþQHNRQþQLUH]XOWDWSD MH DWUR¿MD =PDQMãDQD PRþ PLãLF RPHMXMH EROQLNH pri normalnem gibanju.
VLOGA FIZIOTERAPIJE
3UL RWURFLK ] DNXWQR NUYDYLWYLMR Y VNOHS SULþQHPR V ¿]LRWHUDSLMR WDNRM NR WR GRYROMXMH EROQLNRYR VWDQMH .UDWNRURþQL FLOM MH SRQRYQD JLEOMLYRVW VNOHSDWHUSRYUQLWHYPLãLþQHPRþLLQREVHJDPLãLF 2VUHGRWRþLPR VH QD SUL]DGHWL VNOHS 2WURN L]YDMD aktivne vaje za gibljivost sklepa. Po vbrizganju ]DãþLWQHJD IDNWRUMD L]YDMDPR WXGL SDVLYQR UD]JLEDYDQMHVNOHSD2EWHPPRUDPRVNUEQRSD]LWL GD QH SRY]URþLPR SRQRYQLK NUYDYLWHY = YDMDPL ]D NUHSLWHY PLãLF SULþQHPR SRþDVL 2EUHPHQLWYH PLãLFQHVPHMRELWLSUHYHOLNH]DWRXSRUSRYHþXMHPR postopno. Redno izvajamo meritve gibljivosti LQ REVHJD VNOHSD WHU REVHJD PLãLþQH PDVH VDM QDP REMHNWLYQR SRNDåHMR NDNR XþLQNRYLWR MH zdravljenje. Pridobiti si moramo zaupanje otroka in VWDUãHY GD SUL ]GUDYOMHQMX LQ UHKDELOLWDFLML GHMDYQR VRGHOXMHMRWXGLVDPL'ROJRURþQLFLOM¿]LRWHUDSLMHMH vzpostavitev stanja pred krvavitvijo.
2WURNVKHPR¿OLMRPRUDUHGQRL]YDMDWL¿]LRWHUDSLMR WXGL WDNUDW NR QLPD NUYDYLWHY LQ MH EUH] WHåDY
=DUDGL UD]OLþQLK REOLN KHPR¿OLMH VWDURVWL RWURND VSORãQHJD WHOHVQHJD LQ GXãHYQHJD VWDQMD LQ SRJRVWRVWL SRQDYOMDMRþLK VH NUYDYLWHY N RWURNX SULVWRSLPR LQGLYLGXDOQR 1DYRGLOD SULODJRGLPR YVDNHPX RWURNX SRVHEHM 1DXþLPR JD SUDYLOQHJD
6ORY3HGLDWU L]YDMDQMDWLVWLKYDMNLVR]DQMQDMEROMSULPHUQHLQMLK
ERL]YDMDOYGRPDþHPRNROMX5D]XPHWLPRUDNDNR SRPHPEQRMHGDYDMHRSUDYOMDUHGQR3ULYVHPWHP SD MH ]HOR SRPHPEQD PRWLYDFLMD VDM VR UH]XOWDWL YHOLNREROMãLþHYDMHRSUDYOMD]YHVHOMHP
3UL RWURFLK V KHPR¿OLMR VR Y SURJUDP ¿]LRWHUDSLMH YNOMXþHQL WXGL VWDUãL =DYHGDWL VH PRUDMR pomembnosti dobrega sodelovanja v zdravstvenem WLPX WHU XSRãWHYDWL LQ QDWDQþQR L]YDMDWL YDMH WHU SULSRURþLOD ¿]LRWHUDSHYWRY 9VH WR YSOLYD QD RWURNRY QDGDOMQL GXãHYQL LQ WHOHVQL UD]YRM ODåMH SUHPDJRYDQMH YVDNRGQHYQLK RSUDYLO LQ WHåDY ]PDQMãHYDQMH PRåQRVWL SRQRYQLK NUYDYLWHY LQ VHYHGD]DJRWDYOMDNDNRYRVWQRåLYOMHQMHFHOHGUXåLQH 2WURNDXVPHUMDSULLJULãRODQMXL]ELULSURVWRþDVQLK GHMDYQRVWLLQYNOMXþHYDQMXãSRUWDYVYRMHåLYOMHQMH 'RORþHQH RPHMLWYH SD VR Y åLYOMHQMX RWURND V KHPR¿OLMRãHYHGQRSRWUHEQHSUHGYVHPQDSRGURþMX WHOHVQHUHNUHDFLMHLQãSRUWQLKGHMDYQRVWL2WURNRPV KHPR¿OLMR RGVYHWXMHPR WLVWH GHMDYQRVWL LQ ãSRUWQH ]YUVWLSULNDWHULKSULKDMDGRWHVQHJDWHOHVQHJDVWLND QRJRPHWURNRPHWNRãDUNDKRNHMLQPRWRULVWLþQH ãSRUWH 1DMEROM SULPHUQH GHMDYQRVWL VR SODYDQMH KRMD QDPL]QL WHQLV NROHVDUMHQMH LQ ORNRVWUHOVWYR 6SRGEXMDPRãSRUWHSULNDWHULKODKNRVRGHOXMHFHOD GUXåLQD
AMBULANTNA TERAPEVTSKA OBRAVNAVA
/HWDVPRQD2UWRSHGVNLNOLQLNLSULþHOLL]YDMDWL ambulantno terapevtsko obravnavo bolnikov s KHPR¿OLMRLQYRQ:LOOHEUDQGRYREROH]QLMR'HOHåQL VRMHEROQLNLL]FHOH6ORYHQLMHWXGLRWURFL7UHQXWQR DPEXODQWR UHGQR RELVNXMH NDU KHPR¿OLNRY RG WHJD RWURN 9 DPEXODQWL L]YDMDPR SUHYHQWLYQR LQ NXUDWLYQR ¿]LRWHUDSLMR SUHGRSHUDWLYQR SULSUDYR bolnika in pozno pooperativno rehabilitacijo.
Dejavnost poteka dvakrat na teden v popoldanskem þDVX L]YDMDMR SD MR WUL ¿]LRWHUDSHYWL ] 2UWRSHGVNH NOLQLNH LQ HGHQ V 3HGLDWULþQH NOLQLNH Y /MXEOMDQL Ambulantna obravnava poteka individualno glede QDRWURNRYRWUHQXWQRVWDQMHYDQMRSDVRYNOMXþHQL
WXGL VWDUãL 1D ]DþHWNX YHGQR RFHQLPR RWURNRYR NRVWQRPLãLþQR VWDQMH W L IXQNFLRQDOQL VWDWXV WHU RSUHGHOLPR NUDWNRURþQH LQ GROJRURþQH FLOMH ambulantne terapevtske obravnave.
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+HPR¿OLMD MH EROH]HQ NL ODKNR SULYHGH GR LQYDOLGQRVWL NDU PRþQR SUL]DGHQH WDNR RWURND NRW QMHJRYRGUXåLQR3UHGVWDYOMDYHOLNSUREOHPQDYVHK UDYQHKEROQLNRYHJDåLYOMHQMDRWURNXSDRQHPRJRþD GDELåLYHOWDNRNRWåLYLMRQMHJRYLYUVWQLNL
= UHGQLP LQ SUDYLOQLP L]YDMDQMHP ¿]LRWHUDSLMH ODKNR]PDQMãDPRGHMDYQLNHWYHJDQMD]DLQYDOLGQRVW 9VRGHORYDQMXVVWDUãL]DJRWRYLPREROMãRNDNRYRVW RWURNRYHJD åLYOMHQMD LQ åLYOMHQMD FHOH GUXåLQH RWURNRYQRUPDOHQSVLKR¿]LþQLUD]YRMSUHGYVHPSD QMHJRYR HQDNRYUHGQR YNOMXþHYDQMH Y YVDNRGQHYQH dejavnosti z vrstniki.
LITERATURA
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Kontaktna oseba / Contact person:
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