Gennaio 2013
Giovani con SM
MS in focus O Giovani con SM O 2013
Comitato Editoriale
Federazione Internazionale per la Sclerosi Multipla (MSIF) La missione della MSIF è di guidare il movimento globale per la SM per migliorare la qualità della vita delle persone con SM e per contribuire alla comprensione e alla cura di questa malattia favorendo la collaborazione internazionale delle associazioni nazionali, della comunità scientifica e di professionisti in campo sanitario.
Direttore editoriale Michele Messmer Uccelli, MA, MSCS, Dipartimento Ricerca Sociale e della Sanità, Associazione Italiana Sclerosi Multipla - Genova. Direttore esecutivo Lucy Summers, BA, MRRP, Direttore Editoriale, Federazione Internazionale Sclerosi Multipla. Assistente editoriale Silvia Traversa, MA, Coordinatrice Progetto, Dipartimento Servizi Sociali e Sanitari, Associazione Italiana Sclerosi Multipla - Genova. Membri del Comitato Editoriale
I nostri obiettivi sono:
Francois Bethoux, MD, Mellen Center for MS Treatment and Research, Cleveland, Ohio, USA.
● Stimolare e facilitare la cooperazione
internazionale e la collaborazione nella ricerca volta a comprendere, trattare e curare la SM. ● Sostenere lo sviluppo di associazioni nazionali
per la SM ● Divulgare conoscenze, esperienze e informazioni su questa malattia ● Patrocinare a livello globale la comunità internazionale Visitate il nostro sito web www.msif.org Contribuisci al nostro lavoro per i giovani con la SM nel mondo con una donazione al sito www.msif.org/donate
ISSN1478467x © MSIF Immagine di copertina: Associazione Italiana Sclerosi Multipla
2
Guy De Vos, Membro del Comitato Esecutivo del Comitato Internazionale Persona con SM, Membro del Comitato Editoriale di MS Link, Società SM Belgio. Sherri Giger, MBA, Vice Presidente Esecutivo, Marketing, National Multiple Sclerosis Society, USA. Elizabeth McDonald, MBBS, FAFRM, RACP, Direttore Medico, MS Australia. Dorothea Cassidy Pfohl, RN, BS, MSCN, MS Infermiera, Coordinatore Clinico, Comprehensive MS Center del Dipartimento di Neurologia alla University of Pennsylvania Health System, USA. Pablo Villoslada, Centro per la Sclerosi Multipla, Dipartimento di Neurologia, Clinica ospedaliera di Barcellona, Spagna.
Tradotto da: Agenzia Zadig
Nicki Ward-Abel, Assistente universitario - cattedra in SM, Birmingham City University, Birmingham, UK.
Impaginazione: Teresa Burzigotti
Pavel Zlobin, Vice Presidente, Affari Internazionali, All-Russian MS Society, Russia.
AISM ringrazia Merck Serono per aver permesso, grazie al suo contributo, la traduzione, la stampa e la diffusione di questo numero di MS in focus.
MS in focus O Giovani con SM O 2013
Comitato Editoriale
Federazione Internazionale per la Sclerosi Multipla (MSIF) La missione della MSIF è di guidare il movimento globale per la SM per migliorare la qualità della vita delle persone con SM e per contribuire alla comprensione e alla cura di questa malattia favorendo la collaborazione internazionale delle associazioni nazionali, della comunità scientifica e di professionisti in campo sanitario.
Direttore editoriale Michele Messmer Uccelli, MA, MSCS, Dipartimento Ricerca Sociale e della Sanità, Associazione Italiana Sclerosi Multipla - Genova. Direttore esecutivo Lucy Summers, BA, MRRP, Direttore Editoriale, Federazione Internazionale Sclerosi Multipla. Assistente editoriale Silvia Traversa, MA, Coordinatrice Progetto, Dipartimento Servizi Sociali e Sanitari, Associazione Italiana Sclerosi Multipla - Genova. Membri del Comitato Editoriale
I nostri obiettivi sono:
Francois Bethoux, MD, Mellen Center for MS Treatment and Research, Cleveland, Ohio, USA.
● Stimolare e facilitare la cooperazione
internazionale e la collaborazione nella ricerca volta a comprendere, trattare e curare la SM. ● Sostenere lo sviluppo di associazioni nazionali
per la SM ● Divulgare conoscenze, esperienze e informazioni su questa malattia ● Patrocinare a livello globale la comunità internazionale Visitate il nostro sito web www.msif.org Contribuisci al nostro lavoro per i giovani con la SM nel mondo con una donazione al sito www.msif.org/donate
ISSN1478467x © MSIF Immagine di copertina: Associazione Italiana Sclerosi Multipla
2
Guy De Vos, Membro del Comitato Esecutivo del Comitato Internazionale Persona con SM, Membro del Comitato Editoriale di MS Link, Società SM Belgio. Sherri Giger, MBA, Vice Presidente Esecutivo, Marketing, National Multiple Sclerosis Society, USA. Elizabeth McDonald, MBBS, FAFRM, RACP, Direttore Medico, MS Australia. Dorothea Cassidy Pfohl, RN, BS, MSCN, MS Infermiera, Coordinatore Clinico, Comprehensive MS Center del Dipartimento di Neurologia alla University of Pennsylvania Health System, USA. Pablo Villoslada, Centro per la Sclerosi Multipla, Dipartimento di Neurologia, Clinica ospedaliera di Barcellona, Spagna.
Tradotto da: Agenzia Zadig
Nicki Ward-Abel, Assistente universitario - cattedra in SM, Birmingham City University, Birmingham, UK.
Impaginazione: Teresa Burzigotti
Pavel Zlobin, Vice Presidente, Affari Internazionali, All-Russian MS Society, Russia.
AISM ringrazia Merck Serono per aver permesso, grazie al suo contributo, la traduzione, la stampa e la diffusione di questo numero di MS in focus.
MS in focus O Giovani con SM O 2013
Editoriale
Indice
7LY KLJLUUP SH :4 u Z[H[H \UH THSH[[PH KPHNUVZ[PJH[H ZVWYH[[\[[V PU L[n HK\S[H 3L HJJYLZJP\[L JVUVZJLUaL L SL TPNSPVYP [LJUVSVNPL OHUUV MHJPSP[H[V SH KPHNUVZP JVUZLU[LUKV HP TLKPJP KP PKLU[PÄJHYSH WYPTH ZWLZZV X\HUKV SH WLYZVUH u NPV]HUL Ï JVT\UL JOL P NPV]HUP ZP [YV]PUV H MYVU[LNNPHYL SL ZÄKL KLSSH :4 PU \U TVTLU[V KLSSH WYVWYPH ]P[H YPJJV KP HZWPYHaPVUP L PU J\P NSP PU[LYLZZP ZP Z[HUUV MVYTHUKV L Z]PS\WWHUKV .SP VWLYH[VYP ZHUP[HYP KP VNNP ZVUV JOPHTH[P H ZJLNSPLYL [LYHWPL PU HJJVYKV JVU NPV]HUP LZ[YLTHTLU[L PUMVYTH[P JVUZHWL]VSP L WYLWHYH[P H WHY[LJPWHYL HSSH ZJLS[H KLP [YH[[HTLU[P
Il passo verso l’indipendenza
4
La percezione di sé
6
Rivelare la SM nei rapporti con gli altri
8
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L’ istruzione
10
La carriera
12
Una nuova famiglia: alcune considerazioni
14
Uno stile di vita salutare
16
L’approccio ai trattamenti farmacologici per i giovani con SM
18
Bambini con SM
20
Giovani dalla Malesia e dal Canada condividono le proprie esperienze
22
Il sostegno per i giovani dalle associazioni per la SM nel mondo
24
Risultati di un sondaggio internazionale sui giovani con SM
26
Il prossimo numero di MS in focus riguarderà le capacità cognitive. Inviate le vostre domande e lettere a michele@aism.it oppure all’indirizzo Associazione Italiana SM, Via Operai 40, 16149 Genova, Italia.
Dichiarazione Editoriale Il contenuto di MS in focus è basato sulla conoscenza e l’esperienza professionale. Il comitato editoriale e gli autori si impegnano a fornire un’informazione puntuale e aggiornata. Idee e opinioni qui espresse non rispecchiano necessariamente quelle della Federazione Internazionale. Le informazioni fornite in MS in focus non intendono sostituire il consiglio, le prescrizioni e le raccomandazioni del medico o di altro professionista sanitario. La Federazione Internazionale non approva, sostiene o raccomanda specifici prodotti o servizi, ma fornisce informazioni per aiutare le persone a prendere decisioni autonome.
3
MS in focus O Giovani con SM O 2013
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MS in focus O Giovani con SM O 2013
+
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8\HSP ZVUV P WYVISLTP KLSSL J\YL
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WVZZVUV LZZLYL SH KPTLU[PJHUaH KP HZZ\TLYL P MHYTHJP NSP LMML[[P JVSSH[LYHSP SH MVIPH WLY NSP HNOP SL SPTP[HaPVUP HSSV Z[PSL KP ]P[H SL HZWL[[H[P]L UVU YLHSPZ[PJOL Z\SSL J\YL WLUZHYL JOL WVZZHUV M\UaPVUHYL PTTLKPH[HTLU[L WP\[[VZ[V JOL HJJL[[HYL JOL HIIPHUV \U LMML[[V ULS [LTWV 0S TVTLU[V PU J\P ZP KP]LU[H HK\S[P u HUJOL X\LSSV PU J\P ZP KL]VUV MHYL P JVU[P JVU SH JVUZHWL]VSLaaH KP H]LYL \UH THSH[[PH JYVUPJH 8\LZ[V W\~ JVTWVY[HYL \U ¸S\[[V¹ WLY SH WLYKP[H KLSSH ZHS\[L HJJVTWHNUH[V KH [YPZ[LaaH YHIIPH L ULNHaPVUL JOL WVZZVUV PU[LYMLYPYL JVU SL J\YL YLNVSHYP
+
8\HSL HP\[V W\~ KHYL \U HK\S[V JOL WYLZ[H J\YL V \U WHY[ULY H LU[YHYL ULSS»L[n HK\S[H& <U NLUP[VYL V \U WHY[ULY u PU NYHKV KP JHWPYL SL ZWLYHUaL P ZVNUP L SL HZWL[[H[P]L KLS NPV]HUL L SV W\~ ZVZ[LULYL WLY Z]PS\WWHYL \U WYVNYHTTH KP J\YL L \UV Z[PSL KP ]P[H LMÄJHJL L YLHSPZ[PJV <U VWLYH[VYL ZHUP[HYPV WV[YLIIL HP\[HYL PU X\LZ[V ZLUZV MVYULUKV HS NPV]HUL \UH SPZ[H KP JVU[YVSSV! t /V ÄK\JPH ULSSH JVUVZJLUaH KLSSH TPH JVUKPaPVUL L KLSSH [LYHWPH t /V JHWP[V JOL JVZH WYVIHIPSTLU[L TP HJJHKYn PU L[n HK\S[H t 4P VJJ\WV KLSSH TPH [LYHWPH t ;LUNV PU VYKPUL L YHJJVSNV SL YPJL[[L YPWL[PIPSP L WYLUV[V KH ZVSV SL ]PZP[L t *OPHTV KH ZVSV S»VZWLKHSL ZL OV KVTHUKL Z\S TPV Z[H[V KP ZHS\[L L V SH [LYHWPH t :V JOP X\HUKV L JVTL JVU[H[[HYL HK LZLTWPV UL\YVSVNV PUMLYTPLYL TLKPJV KP MHTPNSPH t 4P ZLU[V ZPJ\YV H MHYTP ]PZP[HYL KH ZVSV t *VUVZJV P TPLP KPYP[[P L SL TPL YLZWVUZHIPSP[n WLY SH WYP]HJ` PS WYVJLZZV KLJPZPVUHSL PS JVUZLUZV L SH YPZLY]H[LaaH (UJOL P NLUP[VYP WVZZVUV H]LYL \UH WYVWYPH SPZ[H KP JVU[YVSSV WLY LZLTWPV YLSH[P]H HS MH[[V JOL ZP ZLU[VUV ZPJ\YP Z\SS»H\[VUVTPH KLS ÄNSPV L ZVUV PU NYHKV KP PUZLNUHYNSP HK HZZ\TLYZP SH YLZWVUZHIPSP[n WLY NSP HWW\U[HTLU[P L WLY SL J\YL 0UVS[YL JOL PU[LUKVUV PUJVYHNNPHYL S»PUKPWLUKLUaH L JVTWYLUKLYL SL HZWPYHaPVUP KLS ÄNSPV ULS X\HKYV KLSSH :4
5
MS in focus O Giovani con SM O 2013
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MS in focus O Giovani con SM O 2013
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MS in focus O Giovani con SM O 2013
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8
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MS in focus O Giovani con SM O 2013
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9
MS in focus O Giovani con SM O 2013
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10
MS in focus O Giovani con SM O 2013
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11
MS in focus O Giovani con SM O 2013
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MS in focus O Giovani con SM O 2013
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MS in focus O Giovani con SM O 2013
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17
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18
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MS in focus O Giovani con SM O 2013
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20
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MS in focus O Giovani con SM O 2013
(KHT *HUHKH :VUV PS WP NPV]HUL KP JPUX\L ÄNSP :VUV UH[V L JYLZJP\[V H 4PZZPZZH\NH 6U[HYPV *HUHKH L HTV ]P]LYL ULSSH TPH JP[[n =P]V JVU P TPLP NLUP[VYP L [VYULY~ H ZJ\VSH PU PU]LYUV X\PUKP HS TVTLU[V Z[V JLYJHUKV \U SH]VYV LZ[P]V LK LZJV JVU P TPLP HTPJP 4P u Z[H[H KPHNUVZ[PJH[H SH :4 X\HUKV H]L]V HUUP VYH UL OV L P ZPU[VTP WYPUJPWHSP ZVUV WYVISLTP KP LX\PSPIYPV Z[HUJOLaaH [YLTVYL HSSL THUP L KLIVSLaaH ULSSL NHTIL +P [\[[P P ZPU[VTP LX\PSPIYPV L KLIVSLaaH HSSL NHTIL ZVUV P WYVISLTP THNNPVYP 8\LZ[V WLYJOt ULSSL NPVYUH[L Zy WVZZV JHTTPUHYL TPU\[P TH PU X\LSSL UV UVU WP KP TPU\[P *HTTPUV JVTL ZL MVZZP \IYPHJV L ULTTLUV IL]V HSJVSPJP +L]V ZVSV YPKLYJP ZVWYH JYLKV *OL JP JYLKPH[L V UV KH WYPUJPWPV UVU S»OV WYLZH [YVWWV THSL :VUV TVS[V V[[PTPZ[H JVZy X\HUKV OV ZTLZZV KP JHTTPUHYL TP ZVUV KL[[V ¸JHTTPULYHP KP U\V]V UVU Z[YLZZHY[P¹ 4H WVP OV PUPaPH[V H JHWPYL JOL TP HJJVTWHNULYn WLY SH ]P[H ([[HJJHYZP H \U HNV VNUP NPVYUV MHYL SH YPZVUHUaH THNUL[PJH ]P]LYL JVU P ZPU[VTP L H]LYL YPJHK\[L OH PUPaPH[V H I\[[HYTP NP +P \UH JVZH ZVUV TVS[V NYH[V HP TPLP HTPJP L MHTPSPHYP *P ZVUV Z[H[P ÄU KHS WYPTV NPVYUV L TP ZVZ[LUNVUV ZLTWYL X\HUKV UL OV IPZVNUV 5VU IHKHUV HS TVKV PU J\P JHTTPUV P TPLP HTPJP JHWPZJVUV ZLTWYL X\HUKV OV IPZVNUV KP \UH WH\ZH L ZP ZPLKVUV HJJHU[V H TL 3H :4 OH JVTWSL[HTLU[L JHTIPH[V SH TPH ]P[H TP OH TLZZV KP MYVU[L HSSH YLHS[n .PVJH]V TVS[V H IHZRL[ L H JHSJPV JVU P TPLP HTPJP JVZH JOL WLY SH :4 UVU YPLZJV WP TVS[V H MHYL ( ]VS[L HYYP]V PU YP[HYKV H SLaPVUL WLYJOt JHTTPUV SLU[HTLU[L TH P TPLP PUZLNUHU[P JVTWYLUKVUV 3H Z[HUJOLaaH L SH KLIVSLaaH HSSL NHTIL JVUKPaPVUHUV SH TPH WHY[LJPWHaPVUL HSSL MLZ[L JVU NSP HTPJP L TP THUJHUV TVS[V 7YPTH KP PUPaPHYL X\HSZPHZP YLSHaPVUL WHYSV KLSSH TPH :4 3L WLYZVUL JOL [LUNVUV YLHSTLU[L H TL UVU ZP WYLVJJ\WHUV -PUV H X\HUKV ZHY~ JVU[LU[V JLYJOLY~ KP YLZ[HYL PU I\VUH ZHS\[L THU[LYY~ \UH YPZ[YL[[H JLYJOPH KP WLYZVUL JOL TP ZVZ[LUNVUV L UVU WLYTL[[LY~ HSSH :4 KP HIIH[[LYTP HSSVYH ZHY~ MLSPJL 7LY PS M\[\YV ZWLYV KP WV[LY H]]PHYL \U X\HSJOL [PWV KP H[[P]P[n
V KP MHYL \UH I\VUH JHYYPLYH 8\HUKV LYV YHNHaaPUV H]L]V SH ZLUZHaPVUL JOL ULZZ\UV TP JHWPZZL ,YV PTIHYHaaH[V L TP ZLU[P]V ]LYHTLU[L PU\[PSL (]LYL SH :4 u KPMÄJPSL TH H]LYSH KH IHTIPUP u HUJVY WP KPMÄJPSL WLYJOt UVU ZP ZH JVZH MHYL SH :4 UVU HYYP]H JVU \U SPIYL[[V KP PZ[Y\aPVUP ( ]VS[L UVU H]L]V ULTTLUV ]VNSPH KP \ZJPYL JVU NSP HTPJP WLYJOt WLUZH]V KP SPTP[HYSP 5LZZ\U IHTIPUV KV]YLIIL H]LYL SH :4 Ï JVZy KPMÄJPSL HUKHYL H ZJ\VSH LK LZZLYL JPYJVUKH[P KH IHTIPUP ZHUP X\HUKV ZP u THSH[P 7LY MVY[\UH VNUP LZ[H[L ]HKV HS *HTWV LZ[P]V VYNHUPaaH[V KHSSH :VJPL[n WLY SH :4 KLS *HUHKH ^^^ TZZVJPL[` JH JHTW KV]L PUJVU[YV HS[YP YHNHaaP JVU :4 ZVUV JVTL \U»HS[YH MHTPNSPH WLY TL ¸9LZWPYH WYVMVUKHTLU[L" OHP SH :4 SH :4 UVU OH [L ¹ 8\LZ[V u JP~ JOL TP KPJV X\HUKV ZVUV WLZZPTPZ[H /V WHZZH[V TVS[P NPVYUP L TVS[L UV[[P JVU SH KLWYLZZPVUL TH HSSH ÄUL OV YLHNP[V ,ZZLYL ULNH[P]P L [YPZ[P UVU HP\[H X\PUKP UVU J»u TV[P]V KP Z[YLZZHYZP 6YH JVTL ZP W\~ UVU Z[YLZZHYZP JVU X\LZ[H THSH[[PH& =P KPJV JP~ JOL OH HP\[H[V TL - < :4 M `V\ ZJSLYVZP T\S[PWSH u PS TPV TV[[V ]P]V KP X\LZ[V :[V ]PJPUV HP TPLP HTPJP L JLYJV KP YPKLYL PS WP WVZZPIPSL TH X\HUKV HYYP]HUV WLUZPLYP ULNH[P]P YPWL[V - < :4 WP L WP ]VS[L *LYJV HUJOL KP WYLUKLYL P MHYTHJP L OV PUPaPH[V HK HUKHYL PU WHSLZ[YH L THUNPHYL PU TVKV ZHUV =VYYLP KPYL H JOP OH HWWLUH H]\[V SH KPHNUVZP KP [LULYL K\YV Ï KPMÄJPSL TH [\ ZLP WP MVY[L 5VU OHP JOPLZ[V [\ KP H]LYL SH :4 WLYJP~ UVU ]LYNVNUHY[LUL L UVU SHZJPHYL JOL \JJPKH SH [\H ÄK\JPH (S JVU[YHYPV HJJL[[H SH [\H ZP[\HaPVUL PU TVKV JOL ULZZ\UV WVZZH \ZHYSH JVU[YV KP [L 0UÄUL ]VYYLP KPYL H YHNHaaP JVU :4 KP ]LUPYL HS *HTWV LZ[P]V L KP MHY WHY[L KLSSH U\V]V MHTPNSPH H TL OH HP\[H[V TVS[V
23
MS in focus O Giovani con SM O 2013
0S ZVZ[LNUV WLY P NPV]HUP KHSSL HZZVJPHaPVUP WLY SH :4 ULS TVUKV :VJPL[n WLY SH :4 KLS *HUHKH :VTLVULSPRLTL JH L *VTTLTVP JH ZVUV NSP \UPJP ZP[P ^LI JOL KPZWVUNVUV KP ISVN MVY\T PUMVYTHaPVUP L Z[VYPL TV[P]HaPVUHSP KP NPV]HUP JVU :4 4VS[P NPV]HUP KPJOPHYHUV KP ZLU[PYZP TVS[V ZVSP KVWV H]LY YPJL]\[V \UH KPHNUVZP KP :4 WLY Zt V WLY \U MHTPSPHYL :VTLVULSPRLTL L *VTTLTVP ]HUUV PUJVU[YV H X\LZ[V IPZVNUV JYLHUKV \UH JVT\UP[n KP WLYZVUL JOL JHWPZJVUV L ]VNSPVUV JVUKP]PKLYL SL WYVWYPL Z[VYPL ZVZ[LULUKVZP S»\U S»HS[YV 0U]P[HUV P NPV]HUP [YH L P HUUP WYV]LUPLU[P KH [\[[V PS TVUKV H ]PZP[HYL JVUKP]PKLYL WHY[LJPWHYL L [YV]HYL ZVZ[LNUV L TV[P]HaPVUL 0S *HTWV LZ[P]V YP]VS[V HP NPV]HUP JVU :4 KP L[n JVTWYLZH MYH L HUUP VMMYL S»VWWVY[\UP[n KP \UH ZL[[PTHUH KP KP]LY[PTLU[V L H]]LU[\YH ]LKP MV[V KHUKV ZVSSPL]V HNSP Z[YLZZ HZZVJPH[P HSSH THSH[[PH 0 JHTWLNNPH[VYP PUJVU[YHUV JVTWHNUP WP HUaPHUP JOL OHUUV ZLN\P[V SL WYVWYPL HZWPYHaPVUP UVUVZ[HU[L SH :4 <U JHTWLNNPH[VYL OH KL[[V! ¸0S JHTWV TP MH ZLU[PYL H TPV HNPV L UVU KH ZVSV JVU SH THSH[[PH 8\LZ[H ZL[[PTHUH TP JHTIPH SH ]P[H¹ RPKZHUK[LLUZJHTW'TZZVJPL[` JH V ^^^ TZZVJPL[` JH JHTW
24
:VJPL[n WLY SH :4 KLSSH .LYTHUPH *P ZVUV TVS[P WYVNYHTTP WLY P NPV]HUP PU .LYTHUPH JOL WYL]LKVUV NY\WWP KP KPZJ\ZZPVUL ZLTPUHYP THUPMLZ[HaPVUP PUMVYTH[P]L JHTWP ^^^ \ JHTW KL ZP[P ^LI ^^^ RPUKLY \UK TZ KL L \UH JVT\UP[n PU[LYUHaPVUHSL PU SPUN\H [LKLZJH Z\ MHJLIVVR KP JPYJH TLTIYP O[[WZ! ^^^ MHJLIVVR JVT NYV\WZ ^PY OHILU KPL RYHM[ 7LY PUMVYTHaPVUP! +4:. )\UKLZ]LYIHUK L = .HIYPLSL :LLZ[HLK[ L THPS! KTZN'KTZN KL
:VJPL[n :]PaaLYH WLY SH :4 *VUNYLZZV HUU\HSL KLP .PV]HUP JVU :4 5LS SH :VJPL[n Z]PaaLYH WLY SH ZJSLYVZP T\S[PWSH OH SHUJPH[V SH WYPTH LKPaPVUL KLS *VUNYLZZV KLP .PV]HUP JVU :4 H A\YPNV Ï \U L]LU[V KLKPJH[V H SVYV L H JOP SP HZZPZ[L 6MMYL \UH WPH[[HMVYTH KP KPZJ\ZZPVUL L SHIVYH[VYP VS[YL H JVUMLYLUaL KP LZWLY[P 0 NPV]HUP WVZZVUV PUJVU[YHYZP L ZJHTIPHYL WHYLYP L VWPUPVUP L ]PLUL HUJOL KH[H SVYV SH WVZZPIPSP[n KP MVYT\SHYL WYVWVZ[L HSSH :VJPL[n WLY P M\[\YP WYVNYHTTP L ZLY]PaP 2H[OY`U :JOULPKLY RZJOULPKLY'T\S[PWSLZRSLYVZL JO
MS in focus O Giovani con SM O 2013
:VJPL[n UVY]LNLZL WLY SH :4 7LY SL MHTPNSPL JVU \U IHTIPUV JVU :4! 3V ZWPYP[V KP X\LZ[V PUJVU[YV HUU\HSL KP NPVYUP u KHYL HP IHTIPUP HP NPV]HUP L HSSL SVYV MHTPNSPL S»VWWVY[\UP[n KP PUJVU[YHYZP L TL[[LYZP PU YL[L ([[YH]LYZV SL WYVWYPL LZWLYPLUaL S»PUMVYTHaPVUL P NPVJOP L SL H[[P]P[n ZVJPHSP KPHTV HSSL MHTPNSPL NSP Z[Y\TLU[P WLY HMMYVU[HYL SH :4 ULSSH ]P[H X\V[PKPHUH .\YSP =HNULY N\YSP'TZ UV 0UJVU[YP [LYYP[VYPHSP WLY P NPV]HUP! P NPV]HUP H NY\WWP ZVUV PU]P[H[P [YL ]VS[L S»HUUV WLY PUJVU[YHYZP L ZJHTIPHYZP LZWLYPLUaL PU TVKV KH WV[LY KHYL JVUZPNSP HNSP HS[YP NPV]HUP ULS WYVWYPV NY\WWV SVJHSL )Q¥YU (UKLYZ -VZZ 0]LYZLU IHMP'TZ UV
(ZZVJPHaPVUL 0[HSPHUH :JSLYVZP 4\S[PWSH *VU]LNUV 5HaPVUHSL KLP .PV]HUP JVU :4 +HS X\LZ[V L]LU[V KP K\L NPVYUP YP\UPZJL NPV]HUP WLY KPZJ\[LYL KP YPJLYJH [LYHWPL NLZ[PVUL KLSSH :4 L X\LZ[PVUP YLSH[P]L HP NPV]HUP <U NY\WWV KP NPV]HUP HP\[H H WYVNL[[HYL SH JVUMLYLUaH JOL VMMYL ZLZZPVUP H KVTHUKH YPZWVZ[H JVU P TPNSPVYP YPJLYJH[VYP L TLKPJP KLSSH :4 L NY\WWP KP JVUMYVU[V Z\ [LTP KP PU[LYLZZL NLULYHSL JVTL SH KLJPZPVUL KP MHYL MHTPNSPH PS SH]VYV SH YP]LSHaPVUL KLSSH THSH[[PH P KPYP[[P L S»LTWV^LYTLU[ 7LY TVS[P WHY[LJPWHYL HS JVU]LNUV u SH WYPTH VJJHZPVUL KP PUJVU[YHYL HS[YL WLYZVUL JVU :4 L WLY LU[YHYL PU JVU[H[[V JVU S»(ZZVJPHaPVUL :PS]PH ;YH]LYZH'HPZT P[
4: 0YSHUKH Z[H SH]VYHUKV WLY Z\WWVY[HYL P NPV]HUP JVU :4 L MVYUPYL VWWVY[\UP[n KP PTWLNUHYZP JVU NSP HS[YP (K LZLTWPV! ZLYH[L PUMVYTH[P]L WLY WLYZVUL ULVKPHNUVZ[PJH[L JOL JLYJHUV Z\WWVY[P ZVJPHSP L Z[H[HSP ZLY]PaP KP HZZPZ[LUaH WZPJVSVNPJH L PS Y\VSV KP SH]VYH[VYP KLSSH JVT\UP[n YLNPVUHSL" \U NY\WWV PUMVYTHSL NLZ[P[V KH NPV]HUP H +\ISPUV ^^^ TLL[\W JVT +\ISPU 4\S[PWSL :JSLYVZPZ .YV\W " \U NY\WWV ZVJPHSL WLY P NPV]HUP H *VYR L \U WYVNYHTTH KP ÄZPV[LYHWPH `VNH LK LZLYJPaPV ÄZPJV ^^^ TZ ZVJPL[` PL V PUMV'TZ ZVJPL[` PL (ZZVJPHaPVUL WLY SH :4 ZWHNUVSH (ZZVJPHaPVUL KP :HSHTHUJH! ¸-YLZO (PY¹ 8\LZ[V WYVNYHTTH TPYH H ZVKKPZMHYL SL LZPNLUaL KP WLYZVUL [YH P L P HUUP 6MMYL SH WVZZPIPSP[n KP JVUVZJLYL HS[YP NPV]HUP JVU :4 KP PUMVYTHYZP Z\SSH WH[VSVNPH L JVTL HKH[[HYZP HK LZZH L KP JVUKP]PKLYL SL WYLVJJ\WHaPVUP JVU HS[YP V JVU NSP LZWLY[P ,Z[HMHUPH 4 *HZLSSLZ PUMV'HKLT VYN (ZZVJPHaPVUL KP 1HtU =PYNLU KLS *HYTLU! 9P[YV]HYZP [YH NPV]HUP JVU :4 8\LZ[V NY\WWV KP ZVZ[LNUV [YH NPV]HUP VMMYL S»VWWVY[\UP[n KP PUJVU[YHYZP JVUKP]PKLYL LZWLYPLUaL L YPSHZZHYZP PUZPLTL 4HYJVZ +H]PK *HIYLYH )HYYHUJV YHWWYLZLU[HU[L KLP NPV]HUP ULS JVTP[H[V LZLJ\[P]V KLSSH (1+,4 HQKLT QV]LU'NTHPS JVT
:OPM[ TZ u \UH JVT\UP[n NSVIHSL KP NPV]HUP JVU :4 HTPJOL]VSP L WVZP[P]P 0 TLTIYP WVZZVUV JVUKP]PKLYL ZVZ[LULYZP L PU[LYHNPYL [YH SVYV Z\SZP[V :OPM[ TZ YP[PLUL JOL SH :4 UVU ZPNUPÄJOP YPU\UJPHYL HSSL WYVWYPL HTIPaPVUP TH ZVSV YPWLUZHYL H JVTL YHNNP\UNLYSL 7LY ZHWLYUL KP WP L WHY[LJPWHYL! ^^^ ZOPM[ TZ
25
MS in focus O Giovani con SM O 2013
9PZ\S[H[P KP \U ZVUKHNNPV PU[LYUHaPVUHSL Z\P NPV]HUP JVU :4 7Pย KP WLYZVUL PU [\[[V PS TVUKV OHUUV WHY[LJPWH[V HS ZVUKHNNPV VUSPUL KP 4: PU MVJ\Z Z\S ]P]LYL JVU SH :4 KH NPV]HUP
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3H ZLJVUKH WHY[L KLSSยปPUKHNPUL YPN\HYKH]H PS ]P]LYL JVU SH :4 L NSP PU[LY]PZ[H[P OHUUV ZJLS[V SH YPZWVZ[H WPย ]PJPUH HSSL SVYV LZWLYPLUaL 3H THNNPVY WHY[L KLSSL YPZWVZ[L u HIIHZ[HUaH WVZP[P]H HK LZLTWPV ULSSยปHMMLYTHaPVUL ยธ,]P[V KP ]LKLYL P TPLP HTPJP L WHYLU[P WLY ]PH KLSSH :4ยน SH THNNPVY WHY[L OH YPZWVZ[V ยบTHPยป PS ยบH ]VS[Lยป Sยป ยบZWLZZVยป L Sยป ยบZLTWYLยป 3ยป OH KPJOPHYH[V JOL SยปHMMLYTHaPVUL ยธ;\[[P P TPLP HTPJP ZHUUV JOL OV SH :4ยน u ]LYH V WHYaPHSTLU[L ]LYH 7LY SH THNNPVYHUaH KP SVYV PU[LY]PZ[H[P ยธ3H :4 TP PTWLKPZJL KP MHYL JP~ JOL ]VNSPVยน u ]LYH ZVSV H ]VS[L (SSV Z[LZZV [LTWV Jยปu HUJOL \U YPJVUVZJPTLU[V KLS WLZV KLSSH
26
ยธ-HJJPV [\[[V KH ZVSV TH OV PS ZVZ[LNUV LTV[P]V KP TPH UVUUH JOL OH SH :4 ยน
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MS in focus O Giovani con SM O 2013
7P KLSSH TL[n KLNSP PU[LY]PZ[H[P OH KPJOPHYH[V KP UVU H]LY IPZVNUV KP \U ZVZ[LNUV X\V[PKPHUV ]LKP NYHÄJV 7LY JVSVYV JOL SV YPJOPLKVUV SH MHTPNSPH u PS ZVZ[LNUV WYPUJPWHSL JVU NSP HTPJP JOL HP\[HUV HS SH]VYV V H ZJ\VSH LK LTV[P]HTLU[L
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27
MS in focus Skyline House 200 Union Street London SE1 0LX UK
La Federazione Internazionale per la SM pubblica 4: in focus due volte l’anno. Con un Comitato Editoriale internazionale, un linguaggio di facile accesso e l’abbonamento gratuito. 4: in focus è disponibile per tutte le persone affette dalla SM del mondo. Contribuisci al nostro lavoro per le persone con la SM nel mondo con una donazione al sito www.msif.org/donate Abbonamenti Entra nel sito www.msif.org/subscribe per ricevere una copia stampata o una email d’avviso per ogni nuova edizione. Numeri precedenti II numeri precedenti riguardano vari temi correlati alla SM e sono disponibili gratuitamente. Scarica o leggi online al sito www.msif.org/msinfocus
Ringraziamenti La FISM desidera ringraziare Merck Serono per l’ampio sostegno che ha reso possibile la pubblicazione di MS in focus.
Tel: +44 (0) 20 7620 1911 Fax: +44 (0) 20 7620 1922 www.msif.org info@msif.org MSIF è un’organizzazione benefica no-profit registrata 501(c)(3) IRC nello Stato del Delaware, USA, nel 1967.
MS in focus O Giovani con SM O 2013
Editoriale
Indice
7LY KLJLUUP SH :4 u Z[H[H \UH THSH[[PH KPHNUVZ[PJH[H ZVWYH[[\[[V PU L[n HK\S[H 3L HJJYLZJP\[L JVUVZJLUaL L SL TPNSPVYP [LJUVSVNPL OHUUV MHJPSP[H[V SH KPHNUVZP JVUZLU[LUKV HP TLKPJP KP PKLU[PÄJHYSH WYPTH ZWLZZV X\HUKV SH WLYZVUH u NPV]HUL Ï JVT\UL JOL P NPV]HUP ZP [YV]PUV H MYVU[LNNPHYL SL ZÄKL KLSSH :4 PU \U TVTLU[V KLSSH WYVWYPH ]P[H YPJJV KP HZWPYHaPVUP L PU J\P NSP PU[LYLZZP ZP Z[HUUV MVYTHUKV L Z]PS\WWHUKV .SP VWLYH[VYP ZHUP[HYP KP VNNP ZVUV JOPHTH[P H ZJLNSPLYL [LYHWPL PU HJJVYKV JVU NPV]HUP LZ[YLTHTLU[L PUMVYTH[P JVUZHWL]VSP L WYLWHYH[P H WHY[LJPWHYL HSSH ZJLS[H KLP [YH[[HTLU[P
Il passo verso l’indipendenza
4
La percezione di sé
6
Rivelare la SM nei rapporti con gli altri
8
:LJVUKV S»L[n L SH J\S[\YH HSJ\UP HZWL[[P KLSSH ]P[H KP \UH WLYZVUH JVU :4 JVTL S»PZ[Y\aPVUL SL YLSHaPVUP ZVJPHSP PS SH]VYV V SH MHTPNSPH ZVUV WP YPSL]HU[P PU \U KL[LYTPUH[V TVTLU[V KLSSH WYVWYPH LZPZ[LUaH 0 NPV]HUP JVU :4 WVZZVUV H]LYL WYVISLTP PULYLU[P HSSH ZJ\VSH HSS»\UP]LYZP[n L PUÄUL ULSSH YPJLYJH KP \U SH]VYV 3L WLYZVUL [YH P L P HUUP WVZZVUV YPJOPLKLYL PUMVYTHaPVUP Z\ JVTL JVUJPSPHYL SH THSH[[PH JVU SH JHYYPLYH L JVU SH KLJPZPVUL KP TL[[LY Z\ MHTPNSPH JOL JYLZJL (S[YP HZWL[[P KLSSH ]P[H JVU SH :4 YPN\HYKHUV [\[[L SL L[n JVTL PS YHWWVY[V JVU P NLUP[VYP S»PTTHNPUL KP Zt L PS YP]LSHYL SH THSH[[PH X\HUKV ZP PUZ[H\YHUV U\V]L YLSHaPVUP ZVJPHSP *VZy TLU[YL X\LZ[V U\TLYV KP 4: PU MVJ\Z ZP YP]VSNL WYL]HSLU[LTLU[L H NPV]HUP HK\S[P [YH P L P HUUP P [LTP WVZZVUV YPN\HYKHYL \U NY\WWV TVS[V WP HTWPV KP WLYZVUL ZLJVUKV SH SVYV JVUKPaPVUL WLYZVUHSL L J\S[\YHSL (IIPHTV PUKP]PK\H[V TVS[P HYNVTLU[P JOL TLYP[HUV KP LZZLYL HWWYVMVUKP[P X\PUKP PS MVYTH[V [YHKPaPVUHSL u Z[H[V \U WV» TVKPÄJH[V L VNU\UV KP LZZP u HJJVTWHNUH[V KH KVTHUKL Z\ X\LS [LTH (IIPHTV HUJOL PUJS\ZV \U HNNPVYUHTLU[V Z\SSH :4 WLKPH[YPJH L PSS\Z[YH[V WYVNYHTTP V H[[P]P[n ZWLJPÄJOL WLY P NPV]HUP JVU :4 KP HS[YL HZZVJPHaPVUP :HYLTV SPL[P KP YPJL]LYL P ]VZ[YP JVTTLU[P 4PJOLSL 4LZZTLY <JJLSSP +PYL[[VYL
L’ istruzione
10
La carriera
12
Una nuova famiglia: alcune considerazioni
14
Uno stile di vita salutare
16
L’approccio ai trattamenti farmacologici per i giovani con SM
18
Bambini con SM
20
Giovani dalla Malesia e dal Canada condividono le proprie esperienze
22
Il sostegno per i giovani dalle associazioni per la SM nel mondo
24
Risultati di un sondaggio internazionale sui giovani con SM
26
Il prossimo numero di MS in focus riguarderà le capacità cognitive. Inviate le vostre domande e lettere a michele@aism.it oppure all’indirizzo Associazione Italiana SM, Via Operai 40, 16149 Genova, Italia.
Dichiarazione Editoriale Il contenuto di MS in focus è basato sulla conoscenza e l’esperienza professionale. Il comitato editoriale e gli autori si impegnano a fornire un’informazione puntuale e aggiornata. Idee e opinioni qui espresse non rispecchiano necessariamente quelle della Federazione Internazionale. Le informazioni fornite in MS in focus non intendono sostituire il consiglio, le prescrizioni e le raccomandazioni del medico o di altro professionista sanitario. La Federazione Internazionale non approva, sostiene o raccomanda specifici prodotti o servizi, ma fornisce informazioni per aiutare le persone a prendere decisioni autonome.
3
MS in focus O Giovani con SM O 2013
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(KLN\HYZP HSSH KPHNUVZP KP :4 u JVTL LSHIVYHYL PS S\[[V WLY SH WLYKP[H KLSS»¹LZZLYL PU MVYTH L PU ZHS\[L¹ KLSSH ZLUZHaPVUL KP UVYTHSP[n LZZLYL KP]LYZP KHP WYVWYP
4
JVL[HULP L KLS JVU[YVSSV P ZPU[VTP WVZZVUV ]LYPÄJHYZP PU X\HSZPHZP TVTLU[V L NSP LMML[[P M\[\YP ZVUV PUJLY[P (UJOL P NLUP[VYP ZWLYPTLU[HUV \U»HUHSVNH WYP]HaPVUL! ZVUV HMÅP[[P WLY SL ZWLYHUaL L P ZVNUP JOL H]L]HUV \U [LTWV WLY P SVYV ÄNSP +L]VUV PTWHYHYL HK HJJL[[HYL ZVNUP U\V]P L YPKPTLUZPVUH[P 0 IHTIPUP WHY[LJPWHUV ZWLZZV WHZZP]HTLU[L HSSH J\YH KLSSH WYVWYPH ZHS\[L 0 NLUP[VYP ZP HZZ\TVUV SL YLZWVUZHIPSP[n WYLUKVUV SL KLJPZPVUP L ZVUV NSP ¸LZWLY[P¹ .SP HKVSLZJLU[P JVTPUJPHUV H ]VSLYZP HZZ\TLYL HSJ\UL YLZWVUZHIPSP[n TH P NLUP[VYP WVZZVUV HUJVYH ZLU[PYZP JVPU]VS[P PU WYPTH WLYZVUH 8\LZ[V W\~ JYLHYL [LUZPVUP! P NLUP[VYP WVZZVUV H]]LY[PYL PS JVUÅP[[V [YH SH M\UaPVUL LK\JH[P]H L PS Y\VSV KP Z\WWVY[V Ï UH[\YHSL JOL P NPV]HUP ]VNSPHUV PUKPWLUKLUaH L JOL UVU ZPHUV ZLTWYL K»HJJVYKV JVU P NLUP[VYP 8\LZ[P WV[YLIILYV ]P]LYL JVU HUZPH PS WHZZHNNPV KH \UH YLZWVUZHIPSP[n KPYL[[H ULSS»HZZPZ[LUaH ZHUP[HYPH HSS»LZJS\ZPVUL 0 NLUP[VYP ZHUUV HUJOL JOL P NPV]HUP [LUKVUV H N\HYKHYL HS WYLZLU[L VYH L HKLZZV L ZVUV TLUV WYLVJJ\WH[P KLP YPZJOP H S\UNV [LYTPUL WLY SH ZHS\[L WLY[HU[V WVZZVUV UVU JHWPYL S»PTWVY[HUaH KP \UH J\YH YLNVSHYL WLY SPTP[HYL JVTWSPJHaPVUP M\[\YL \UH YPJHK\[H WLY LZLTWPV .SP HKVSLZJLU[P WVZZVUV ZLU[PYZP PTWYLWHYH[P ULS TVTLU[V PU J\P KL]VUV PUPaPHYL H NLZ[PYL SH WYVWYPH ZHS\[L 3L KPMÄJVS[n LTLYNVUV X\HUKV PS NPV]HUL KL]L WYLUKLYL JVU[H[[V JVU P U\V]P ZLY]PaP WLY HK\S[P HUaPJOt WLKPH[YPJP L [HS]VS[H X\HUKV ]P ZVUV KLP NHW ULSSH JVWLY[\YH ZHUP[HYPH [YH P L P HUUP .SP VWLYH[VYP ZHUP[HYP WVZZVUV HZZPZ[LYL SL MHTPNSPL K\YHU[L X\LZ[P JHTIPHTLU[P 7LY LZLTWPV WVZZVUV HP\[HYL PS NLUP[VYL H WHZZHYL HS Y\VSV KP Z\WLY]PZVYL L JVUZ\SLU[L (SSV Z[LZZV [LTWV WVZZVUV HZZPZ[LYL PS NPV]HUL WLYJOt ZP HIP[\P UVU ZVSV H YPJL]LYL J\YL TH H NLZ[PYL SH WYVWYPH HZZPZ[LUaH ZHUP[HYPH 3»PUNYLZZV ULSS»L[n HK\S[H u \U TVTLU[V LTVaPVUHU[L PU J\P ZP PU[YHWYLUKVUV U\V]L H[[P]P[n MVYTH[P]L ZVJPHSP L WYVMLZZPVUHSP Ï LZZLUaPHSL PTWHYHYL H ]P]LYL JVU SH KPHNUVZP KP :4 L HJX\PZPYL SH JVTWSL[H JHWHJP[n KP H\[VNLZ[PYZP
MS in focus O Giovani con SM O 2013
+
*VTL WVZZVUV NSP VWLYH[VYP ZHUP[HYP WYLWHYHYL P NPV]HUP JVU :4 HK HMMYVU[HYL PS WHZZHNNPV HP ZLY]PaP KP HZZPZ[LUaH WLY HK\S[P& .SP VWLYH[VYP ZHUP[HYP WLKPH[YPJP WVZZVUV PU[YVK\YYL WLY [LTWV PS WYVISLTH KLS WHZZHNNPV HP ZLY]PaP WLY HK\S[P Ï \UH I\VUH PKLH JOL H VNUP JVUZ\S[V TLKPJV ]P ZPH \UH WHY[L YPZLY]H[H HS NPV]HUL KH ZVSV L \UH PU WYLZLUaH KLP NLUP[VYP V KLP JHYL NP]LY 8\HUKV LU[YHTIP ZVUV WYLZLU[P P X\LZP[P JSPUPJP HUKYLIILYV PUKPYPaaH[P HS NPV]HUL L KV]YLIILYV NHYHU[PYL \UH JVTWYLUZPVUL KLSSH THSH[[PH KLSSH ZJLS[H KLP [YH[[HTLU[P L KLSS»PTWH[[V KLSSH :4 Z\S ILULZZLYL WZPJVZVJPHSL (UJOL HZZLNUHYL \U JVTWP[V ZWLJPÄJV HS NPV]HUL JVTL ÄZZHYL PS WYVZZPTV HWW\U[HTLU[V PUJVYHNNPH S»PUKPWLUKLUaH :P [YH[[H KP \U WHZZV MVUKHTLU[HSL ZPH WLY PS NPV]HUL ZPH WLY P NLUP[VYP WLY J\P u PTWVY[HU[L ZWPLNHYL HP NLUP[VYP X\HSP ZVUV SL ZÄKL JOL KV]Yn HMMYVU[HYL PS NPV]HUL ULS NLZ[PYL SH WYVWYPH ZHS\[L :L P NPV]HUP L P SVYV NLUP[VYP WVZZVUV HP\[HYZP H ]PJLUKH L JVTWYLUKLYZP TLNSPV PS Z\JJLZZV u WP WYVIHIPSL L ]P ZHYn \U PTWLNUV H[[P]V KLS NPV]HUL ULP ZLY]PaP WLY HK\S[P
+
8\HSP ZVUV P WYVISLTP KLSSL J\YL
KP YV\[PUL WLY P NPV]HUP&
:LN\PYL JVU JVZ[HUaH SL J\YL UL V[[PTPaaH P ILULÄJP ;\[[H]PH WLY TVS[L YHNPVUP ULP NPV]HUP PS YPZWL[[V KLSSH YV\[PUL ZWLZZV KPTPU\PZJL JVU PS [LTWV +\YHU[L S»HKVSLZJLUaH P NPV]HUP HJX\PZPZJVUV \U ZLUZV KP VUUPWV[LUaH L WVZZVUV PTWYV]]PZHTLU[L ZLU[PYZP ZPJ\YP KLSSH WYVWYPH JVUVZJLUaH KLS TVUKV OHUUV SH ZLUZHaPVUL KP WV[LY MHYL [\[[V 0U YLHS[n ZVUV PULZWLY[P ZVWYH[[\[[V ULS ]HS\[HYL YPZJOP H IYL]L L S\UNV [LYTPUL L X\PUKP WVZZVUV UVU JVTWYLUKLYL P ILULÄJP KLP MHYTHJP WYLZP H S\UNV [LYTPUL .SP HKVSLZJLU[P ZWLZZV KLZPKLYHUV SH WYVWYPH PUKPWLUKLUaH L H\[VUVTPH JOL JVU[YHZ[H JVU SH ULJLZZP[n KP LZZLYL HZZPZ[P[P L KP ZLN\PYL J\YL YLNVSHYP (S[YL YHNPVUP WLY UVU ZLN\PYL JVU YLNVSHYP[n SL J\YL
WVZZVUV LZZLYL SH KPTLU[PJHUaH KP HZZ\TLYL P MHYTHJP NSP LMML[[P JVSSH[LYHSP SH MVIPH WLY NSP HNOP SL SPTP[HaPVUP HSSV Z[PSL KP ]P[H SL HZWL[[H[P]L UVU YLHSPZ[PJOL Z\SSL J\YL WLUZHYL JOL WVZZHUV M\UaPVUHYL PTTLKPH[HTLU[L WP\[[VZ[V JOL HJJL[[HYL JOL HIIPHUV \U LMML[[V ULS [LTWV 0S TVTLU[V PU J\P ZP KP]LU[H HK\S[P u HUJOL X\LSSV PU J\P ZP KL]VUV MHYL P JVU[P JVU SH JVUZHWL]VSLaaH KP H]LYL \UH THSH[[PH JYVUPJH 8\LZ[V W\~ JVTWVY[HYL \U ¸S\[[V¹ WLY SH WLYKP[H KLSSH ZHS\[L HJJVTWHNUH[V KH [YPZ[LaaH YHIIPH L ULNHaPVUL JOL WVZZVUV PU[LYMLYPYL JVU SL J\YL YLNVSHYP
+
8\HSL HP\[V W\~ KHYL \U HK\S[V JOL WYLZ[H J\YL V \U WHY[ULY H LU[YHYL ULSS»L[n HK\S[H& <U NLUP[VYL V \U WHY[ULY u PU NYHKV KP JHWPYL SL ZWLYHUaL P ZVNUP L SL HZWL[[H[P]L KLS NPV]HUL L SV W\~ ZVZ[LULYL WLY Z]PS\WWHYL \U WYVNYHTTH KP J\YL L \UV Z[PSL KP ]P[H LMÄJHJL L YLHSPZ[PJV <U VWLYH[VYL ZHUP[HYPV WV[YLIIL HP\[HYL PU X\LZ[V ZLUZV MVYULUKV HS NPV]HUL \UH SPZ[H KP JVU[YVSSV! t /V ÄK\JPH ULSSH JVUVZJLUaH KLSSH TPH JVUKPaPVUL L KLSSH [LYHWPH t /V JHWP[V JOL JVZH WYVIHIPSTLU[L TP HJJHKYn PU L[n HK\S[H t 4P VJJ\WV KLSSH TPH [LYHWPH t ;LUNV PU VYKPUL L YHJJVSNV SL YPJL[[L YPWL[PIPSP L WYLUV[V KH ZVSV SL ]PZP[L t *OPHTV KH ZVSV S»VZWLKHSL ZL OV KVTHUKL Z\S TPV Z[H[V KP ZHS\[L L V SH [LYHWPH t :V JOP X\HUKV L JVTL JVU[H[[HYL HK LZLTWPV UL\YVSVNV PUMLYTPLYL TLKPJV KP MHTPNSPH t 4P ZLU[V ZPJ\YV H MHYTP ]PZP[HYL KH ZVSV t *VUVZJV P TPLP KPYP[[P L SL TPL YLZWVUZHIPSP[n WLY SH WYP]HJ` PS WYVJLZZV KLJPZPVUHSL PS JVUZLUZV L SH YPZLY]H[LaaH (UJOL P NLUP[VYP WVZZVUV H]LYL \UH WYVWYPH SPZ[H KP JVU[YVSSV WLY LZLTWPV YLSH[P]H HS MH[[V JOL ZP ZLU[VUV ZPJ\YP Z\SS»H\[VUVTPH KLS ÄNSPV L ZVUV PU NYHKV KP PUZLNUHYNSP HK HZZ\TLYZP SH YLZWVUZHIPSP[n WLY NSP HWW\U[HTLU[P L WLY SL J\YL 0UVS[YL JOL PU[LUKVUV PUJVYHNNPHYL S»PUKPWLUKLUaH L JVTWYLUKLYL SL HZWPYHaPVUP KLS ÄNSPV ULS X\HKYV KLSSH :4
5
MS in focus O Giovani con SM O 2013
3H WLYJLaPVUL KP Zt )LULKL[[H .VYL[[P +PWHY[PTLU[V KP :JPLUaL 5L\YVSVNPJOL <UP]LYZP[n KP -PYLUaL
3»H\[VZ[PTH L S»PTTHNPUL KP Zt UHZJVUV KHS NP\KPaPV JOL \UH WLYZVUH OH KP Z[LZZH 8\LZ[H ]HS\[HaPVUL ZP IHZH ZWLZZV Z\ JVTL SH WLYZVUH ]LKL NSP HZWL[[P PTWVY[HU[P KLSSH ]P[H PUJS\ZP X\LSSP ÄZPJP WZPJVSVNPJP L YLSHaPVUHSP 7LY TVS[P NPV]HUP JVU V ZLUaH :4 S»PTTHNPUL KP Zt L S»H\[V Z[PTH ZVUV H YPZJOPV X\HUKV PS JVYWV JVTPUJPH H KP]LU[HYL HK\S[V 3L WLYZVUL JVU :4 OHUUV PU NLULYHSL SP]LSSP KP H\[VZ[PTH WP IHZZP YPZWL[[V HSSH WVWVSHaPVUL 8\LZ[V UVU Z[\WPZJL KH[V JOL SL KPZHIPSP[n ÄZPJOL JVYYLSH[L HSSH :4 WVZZVUV PUÅ\LUaHYL SH ]P[H KP [\[[P P NPVYUP 0U \U YLJLU[L Z[\KPV ZP u ]PZ[V JVTL PS ZVZ[LNUV ZVJPHSL ZPH PTWVY[HU[L WLY TPNSPVYHYL S»H\[VZ[PTH L PS ILULZZLYL WZPJVSVNPJV KLSSL WLYZVUL JVU :4 :VZ[LNUV ZVJPHSL ZPNUPÄJH YPJL]LYL KH HS[YL WLYZVUL YHZZPJ\YHaPVUP Z\SS»LZZLYL HTH[P J\YH[P Z[PTH[P HWWYLaaH[P L WHY[L KP \UH YL[L KP JVT\UPJHaPVUL JVU VIISPNOP L HP\[P YLJPWYVJP
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6
0 WYVISLTP KP PTTHNPUL JVYWVYLH KV]YLIILYV LZZLYL HMMYVU[H[P X\HUKV SL WLYZVUL JVU :4 PUJVU[YHUV PS TLKPJV V S»PUMLYTPLYL [LULUKV JVU[V KLSSL KPMMLYLUaL KP ZLZZV :L ULJLZZHYPV SH WLYZVUL KV]YLIILYV LZZLYL PUJVYHNNPH[L H JLYJHYL L HJJL[[HYL \U HP\[V WZPJVSVNPJV 3L M\UaPVUP ZLZZ\HSP ZVUV JVTWSLZZL KPWLUKVUV KHS ZPZ[LTH UL\YVSVNPJV ]HZJVSHYL LK LUKVJYPUV L ZVUV PUÅ\LUaH[L KH U\TLYVZP MH[[VYP WZPJVZVJPHSP PUJS\ZP SH MHTPNSPH SH YLSPNPVUL V PS WHY[ULY JVZy JVTL KH MH[[VYP PUKP]PK\HSP X\HSP S»H\[VZ[PTH L S»PTTHNPUL KP Zt 0 NPV]HUP JVU :4 WVZZVUV WLUZHYL JOL P WYVISLTP ZLZZ\HSP UVU ZPHUV HIIHZ[HUaH PTWVY[HU[P KH LZZLYL KPZJ\ZZP JVU PS TLKPJV L P TLKPJP WV[YLIILYV ZLU[PYZP H KPZHNPV V PTWYLWHYH[P ULSS»HMMYVU[HYSP JVU SVYV *VU SH JYLZJLU[L JVUZHWL]VSLaaH KLSS»PTWVY[HUaH KLSSH M\UaPVUL ZLZZ\HSL Z\SSH X\HSP[n KLSSH ]P[H L SV Z]PS\WWV KP [YH[[HTLU[P TLKPJP L WZPJVZLZZ\HSP ;07:
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7
MS in focus O Giovani con SM O 2013
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8
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9
MS in focus O Giovani con SM O 2013
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10
MS in focus O Giovani con SM O 2013
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11
MS in focus O Giovani con SM O 2013
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12
MS in focus O Giovani con SM O 2013
X\LSSH NP\Z[H HUJOL ZL ]PZ[H S»PTWYL]LKPIPSP[n KLSSH THSH[[PH SH KLJPZPVUL WV[YLIIL KV]LY LZZLYL YP]PZ[H PU \U ZLJVUKV TVTLU[V Ï TVS[V PTWVY[HU[L WLY P NPV]HUP JVU :4 LZZLYL PUMVYTH[P Z\P KPYP[[P YLSH[P]P HSS»VJJ\WHaPVUL ULS WYVWYPV WHLZL 4VS[L HZZVJPHaPVUP WLY SH :4 L HS[YL VYNHUPaaHaPVUP OHUUV ZLY]PaP KLKPJH[P HS SH]VYV JOL WVZZVUV HP\[HYL SH WLYZVUH PU X\LZ[PVUP WYH[PJOL JVTL WYLWHYHYL \U JVSSVX\PV KP SH]VYV ZJYP]LYL \U J\YYPJ\S\T L HUJOL ]HS\[HYL WYVISLTP KP HJJLZZPIPSP[n Z\S S\VNV KP SH]VYV
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13
MS in focus O Giovani con SM O 2013
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MS in focus O Giovani con SM O 2013
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3H :4 W\~ PUÅ\PYL Z\SSH MLY[PSP[n&
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17
MS in focus O Giovani con SM O 2013
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19
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20
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22
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V KP MHYL \UH I\VUH JHYYPLYH 8\HUKV LYV YHNHaaPUV H]L]V SH ZLUZHaPVUL JOL ULZZ\UV TP JHWPZZL ,YV PTIHYHaaH[V L TP ZLU[P]V ]LYHTLU[L PU\[PSL (]LYL SH :4 u KPMÄJPSL TH H]LYSH KH IHTIPUP u HUJVY WP KPMÄJPSL WLYJOt UVU ZP ZH JVZH MHYL SH :4 UVU HYYP]H JVU \U SPIYL[[V KP PZ[Y\aPVUP ( ]VS[L UVU H]L]V ULTTLUV ]VNSPH KP \ZJPYL JVU NSP HTPJP WLYJOt WLUZH]V KP SPTP[HYSP 5LZZ\U IHTIPUV KV]YLIIL H]LYL SH :4 Ï JVZy KPMÄJPSL HUKHYL H ZJ\VSH LK LZZLYL JPYJVUKH[P KH IHTIPUP ZHUP X\HUKV ZP u THSH[P 7LY MVY[\UH VNUP LZ[H[L ]HKV HS *HTWV LZ[P]V VYNHUPaaH[V KHSSH :VJPL[n WLY SH :4 KLS *HUHKH ^^^ TZZVJPL[` JH JHTW KV]L PUJVU[YV HS[YP YHNHaaP JVU :4 ZVUV JVTL \U»HS[YH MHTPNSPH WLY TL ¸9LZWPYH WYVMVUKHTLU[L" OHP SH :4 SH :4 UVU OH [L ¹ 8\LZ[V u JP~ JOL TP KPJV X\HUKV ZVUV WLZZPTPZ[H /V WHZZH[V TVS[P NPVYUP L TVS[L UV[[P JVU SH KLWYLZZPVUL TH HSSH ÄUL OV YLHNP[V ,ZZLYL ULNH[P]P L [YPZ[P UVU HP\[H X\PUKP UVU J»u TV[P]V KP Z[YLZZHYZP 6YH JVTL ZP W\~ UVU Z[YLZZHYZP JVU X\LZ[H THSH[[PH& =P KPJV JP~ JOL OH HP\[H[V TL - < :4 M `V\ ZJSLYVZP T\S[PWSH u PS TPV TV[[V ]P]V KP X\LZ[V :[V ]PJPUV HP TPLP HTPJP L JLYJV KP YPKLYL PS WP WVZZPIPSL TH X\HUKV HYYP]HUV WLUZPLYP ULNH[P]P YPWL[V - < :4 WP L WP ]VS[L *LYJV HUJOL KP WYLUKLYL P MHYTHJP L OV PUPaPH[V HK HUKHYL PU WHSLZ[YH L THUNPHYL PU TVKV ZHUV =VYYLP KPYL H JOP OH HWWLUH H]\[V SH KPHNUVZP KP [LULYL K\YV Ï KPMÄJPSL TH [\ ZLP WP MVY[L 5VU OHP JOPLZ[V [\ KP H]LYL SH :4 WLYJP~ UVU ]LYNVNUHY[LUL L UVU SHZJPHYL JOL \JJPKH SH [\H ÄK\JPH (S JVU[YHYPV HJJL[[H SH [\H ZP[\HaPVUL PU TVKV JOL ULZZ\UV WVZZH \ZHYSH JVU[YV KP [L 0UÄUL ]VYYLP KPYL H YHNHaaP JVU :4 KP ]LUPYL HS *HTWV LZ[P]V L KP MHY WHY[L KLSSH U\V]V MHTPNSPH H TL OH HP\[H[V TVS[V
23
MS in focus O Giovani con SM O 2013
0S ZVZ[LNUV WLY P NPV]HUP KHSSL HZZVJPHaPVUP WLY SH :4 ULS TVUKV :VJPL[n WLY SH :4 KLS *HUHKH :VTLVULSPRLTL JH L *VTTLTVP JH ZVUV NSP \UPJP ZP[P ^LI JOL KPZWVUNVUV KP ISVN MVY\T PUMVYTHaPVUP L Z[VYPL TV[P]HaPVUHSP KP NPV]HUP JVU :4 4VS[P NPV]HUP KPJOPHYHUV KP ZLU[PYZP TVS[V ZVSP KVWV H]LY YPJL]\[V \UH KPHNUVZP KP :4 WLY Zt V WLY \U MHTPSPHYL :VTLVULSPRLTL L *VTTLTVP ]HUUV PUJVU[YV H X\LZ[V IPZVNUV JYLHUKV \UH JVT\UP[n KP WLYZVUL JOL JHWPZJVUV L ]VNSPVUV JVUKP]PKLYL SL WYVWYPL Z[VYPL ZVZ[LULUKVZP S»\U S»HS[YV 0U]P[HUV P NPV]HUP [YH L P HUUP WYV]LUPLU[P KH [\[[V PS TVUKV H ]PZP[HYL JVUKP]PKLYL WHY[LJPWHYL L [YV]HYL ZVZ[LNUV L TV[P]HaPVUL 0S *HTWV LZ[P]V YP]VS[V HP NPV]HUP JVU :4 KP L[n JVTWYLZH MYH L HUUP VMMYL S»VWWVY[\UP[n KP \UH ZL[[PTHUH KP KP]LY[PTLU[V L H]]LU[\YH ]LKP MV[V KHUKV ZVSSPL]V HNSP Z[YLZZ HZZVJPH[P HSSH THSH[[PH 0 JHTWLNNPH[VYP PUJVU[YHUV JVTWHNUP WP HUaPHUP JOL OHUUV ZLN\P[V SL WYVWYPL HZWPYHaPVUP UVUVZ[HU[L SH :4 <U JHTWLNNPH[VYL OH KL[[V! ¸0S JHTWV TP MH ZLU[PYL H TPV HNPV L UVU KH ZVSV JVU SH THSH[[PH 8\LZ[H ZL[[PTHUH TP JHTIPH SH ]P[H¹ RPKZHUK[LLUZJHTW'TZZVJPL[` JH V ^^^ TZZVJPL[` JH JHTW
24
:VJPL[n WLY SH :4 KLSSH .LYTHUPH *P ZVUV TVS[P WYVNYHTTP WLY P NPV]HUP PU .LYTHUPH JOL WYL]LKVUV NY\WWP KP KPZJ\ZZPVUL ZLTPUHYP THUPMLZ[HaPVUP PUMVYTH[P]L JHTWP ^^^ \ JHTW KL ZP[P ^LI ^^^ RPUKLY \UK TZ KL L \UH JVT\UP[n PU[LYUHaPVUHSL PU SPUN\H [LKLZJH Z\ MHJLIVVR KP JPYJH TLTIYP O[[WZ! ^^^ MHJLIVVR JVT NYV\WZ ^PY OHILU KPL RYHM[ 7LY PUMVYTHaPVUP! +4:. )\UKLZ]LYIHUK L = .HIYPLSL :LLZ[HLK[ L THPS! KTZN'KTZN KL
:VJPL[n :]PaaLYH WLY SH :4 *VUNYLZZV HUU\HSL KLP .PV]HUP JVU :4 5LS SH :VJPL[n Z]PaaLYH WLY SH ZJSLYVZP T\S[PWSH OH SHUJPH[V SH WYPTH LKPaPVUL KLS *VUNYLZZV KLP .PV]HUP JVU :4 H A\YPNV Ï \U L]LU[V KLKPJH[V H SVYV L H JOP SP HZZPZ[L 6MMYL \UH WPH[[HMVYTH KP KPZJ\ZZPVUL L SHIVYH[VYP VS[YL H JVUMLYLUaL KP LZWLY[P 0 NPV]HUP WVZZVUV PUJVU[YHYZP L ZJHTIPHYL WHYLYP L VWPUPVUP L ]PLUL HUJOL KH[H SVYV SH WVZZPIPSP[n KP MVYT\SHYL WYVWVZ[L HSSH :VJPL[n WLY P M\[\YP WYVNYHTTP L ZLY]PaP 2H[OY`U :JOULPKLY RZJOULPKLY'T\S[PWSLZRSLYVZL JO
MS in focus O Giovani con SM O 2013
:VJPL[n UVY]LNLZL WLY SH :4 7LY SL MHTPNSPL JVU \U IHTIPUV JVU :4! 3V ZWPYP[V KP X\LZ[V PUJVU[YV HUU\HSL KP NPVYUP u KHYL HP IHTIPUP HP NPV]HUP L HSSL SVYV MHTPNSPL S»VWWVY[\UP[n KP PUJVU[YHYZP L TL[[LYZP PU YL[L ([[YH]LYZV SL WYVWYPL LZWLYPLUaL S»PUMVYTHaPVUL P NPVJOP L SL H[[P]P[n ZVJPHSP KPHTV HSSL MHTPNSPL NSP Z[Y\TLU[P WLY HMMYVU[HYL SH :4 ULSSH ]P[H X\V[PKPHUH .\YSP =HNULY N\YSP'TZ UV 0UJVU[YP [LYYP[VYPHSP WLY P NPV]HUP! P NPV]HUP H NY\WWP ZVUV PU]P[H[P [YL ]VS[L S»HUUV WLY PUJVU[YHYZP L ZJHTIPHYZP LZWLYPLUaL PU TVKV KH WV[LY KHYL JVUZPNSP HNSP HS[YP NPV]HUP ULS WYVWYPV NY\WWV SVJHSL )Q¥YU (UKLYZ -VZZ 0]LYZLU IHMP'TZ UV
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4: 0YSHUKH Z[H SH]VYHUKV WLY Z\WWVY[HYL P NPV]HUP JVU :4 L MVYUPYL VWWVY[\UP[n KP PTWLNUHYZP JVU NSP HS[YP (K LZLTWPV! ZLYH[L PUMVYTH[P]L WLY WLYZVUL ULVKPHNUVZ[PJH[L JOL JLYJHUV Z\WWVY[P ZVJPHSP L Z[H[HSP ZLY]PaP KP HZZPZ[LUaH WZPJVSVNPJH L PS Y\VSV KP SH]VYH[VYP KLSSH JVT\UP[n YLNPVUHSL" \U NY\WWV PUMVYTHSL NLZ[P[V KH NPV]HUP H +\ISPUV ^^^ TLL[\W JVT +\ISPU 4\S[PWSL :JSLYVZPZ .YV\W " \U NY\WWV ZVJPHSL WLY P NPV]HUP H *VYR L \U WYVNYHTTH KP ÄZPV[LYHWPH `VNH LK LZLYJPaPV ÄZPJV ^^^ TZ ZVJPL[` PL V PUMV'TZ ZVJPL[` PL (ZZVJPHaPVUL WLY SH :4 ZWHNUVSH (ZZVJPHaPVUL KP :HSHTHUJH! ¸-YLZO (PY¹ 8\LZ[V WYVNYHTTH TPYH H ZVKKPZMHYL SL LZPNLUaL KP WLYZVUL [YH P L P HUUP 6MMYL SH WVZZPIPSP[n KP JVUVZJLYL HS[YP NPV]HUP JVU :4 KP PUMVYTHYZP Z\SSH WH[VSVNPH L JVTL HKH[[HYZP HK LZZH L KP JVUKP]PKLYL SL WYLVJJ\WHaPVUP JVU HS[YP V JVU NSP LZWLY[P ,Z[HMHUPH 4 *HZLSSLZ PUMV'HKLT VYN (ZZVJPHaPVUL KP 1HtU =PYNLU KLS *HYTLU! 9P[YV]HYZP [YH NPV]HUP JVU :4 8\LZ[V NY\WWV KP ZVZ[LNUV [YH NPV]HUP VMMYL S»VWWVY[\UP[n KP PUJVU[YHYZP JVUKP]PKLYL LZWLYPLUaL L YPSHZZHYZP PUZPLTL 4HYJVZ +H]PK *HIYLYH )HYYHUJV YHWWYLZLU[HU[L KLP NPV]HUP ULS JVTP[H[V LZLJ\[P]V KLSSH (1+,4 HQKLT QV]LU'NTHPS JVT
:OPM[ TZ u \UH JVT\UP[n NSVIHSL KP NPV]HUP JVU :4 HTPJOL]VSP L WVZP[P]P 0 TLTIYP WVZZVUV JVUKP]PKLYL ZVZ[LULYZP L PU[LYHNPYL [YH SVYV Z\SZP[V :OPM[ TZ YP[PLUL JOL SH :4 UVU ZPNUPÄJOP YPU\UJPHYL HSSL WYVWYPL HTIPaPVUP TH ZVSV YPWLUZHYL H JVTL YHNNP\UNLYSL 7LY ZHWLYUL KP WP L WHY[LJPWHYL! ^^^ ZOPM[ TZ
25
MS in focus O Giovani con SM O 2013
9PZ\S[H[P KP \U ZVUKHNNPV PU[LYUHaPVUHSL Z\P NPV]HUP JVU :4 7Pย KP WLYZVUL PU [\[[V PS TVUKV OHUUV WHY[LJPWH[V HS ZVUKHNNPV VUSPUL KP 4: PU MVJ\Z Z\S ]P]LYL JVU SH :4 KH NPV]HUP
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3H ZLJVUKH WHY[L KLSSยปPUKHNPUL YPN\HYKH]H PS ]P]LYL JVU SH :4 L NSP PU[LY]PZ[H[P OHUUV ZJLS[V SH YPZWVZ[H WPย ]PJPUH HSSL SVYV LZWLYPLUaL 3H THNNPVY WHY[L KLSSL YPZWVZ[L u HIIHZ[HUaH WVZP[P]H HK LZLTWPV ULSSยปHMMLYTHaPVUL ยธ,]P[V KP ]LKLYL P TPLP HTPJP L WHYLU[P WLY ]PH KLSSH :4ยน SH THNNPVY WHY[L OH YPZWVZ[V ยบTHPยป PS ยบH ]VS[Lยป Sยป ยบZWLZZVยป L Sยป ยบZLTWYLยป 3ยป OH KPJOPHYH[V JOL SยปHMMLYTHaPVUL ยธ;\[[P P TPLP HTPJP ZHUUV JOL OV SH :4ยน u ]LYH V WHYaPHSTLU[L ]LYH 7LY SH THNNPVYHUaH KP SVYV PU[LY]PZ[H[P ยธ3H :4 TP PTWLKPZJL KP MHYL JP~ JOL ]VNSPVยน u ]LYH ZVSV H ]VS[L (SSV Z[LZZV [LTWV Jยปu HUJOL \U YPJVUVZJPTLU[V KLS WLZV KLSSH
26
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MS in focus O Giovani con SM O 2013
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27
MS in focus Skyline House 200 Union Street London SE1 0LX UK
La Federazione Internazionale per la SM pubblica MS in focus due volte l’anno. Con un Comitato Editoriale internazionale, un linguaggio di facile accesso e l’abbonamento gratuito. MS in focus è disponibile per tutte le persone affette dalla SM del mondo. Contribuisci al nostro lavoro per le persone con la SM nel mondo con una donazione al sito www.msif.org/donate Abbonamenti Entra nel sito www.msif.org/subscribe per ricevere una copia stampata o una email d’avviso per ogni nuova edizione. Numeri precedenti II numeri precedenti riguardano vari temi correlati alla SM e sono disponibili gratuitamente. Scarica o leggi online al sito www.msif.org/msinfocus
Ringraziamenti La FISM desidera ringraziare Merck Serono per l’ampio sostegno che ha reso possibile la pubblicazione di MS in focus.
Tel: +44 (0) 20 7620 1911 Fax: +44 (0) 20 7620 1922 www.msif.org info@msif.org MSIF è un’organizzazione benefica no-profit registrata 501(c)(3) IRC nello Stato del Delaware, USA, nel 1967.