Indlela entsha yoNyango lweCardiomyopathy
IiNdlela eziTshayo zokuPhucula iCardiomyopathy Care
In ElamaTaliyane, i-cardiomyopathies ichaphazela ngaphezulu abantu 350,000, ibeka umngeni omkhulu kwinkqubo yezempilo yesizwe. Eyokuqala Ingxelo yaseNtaliyane ngeCardiomyopathies iphawula inguqu, iphakamisa iinjongo zamabhongo ukuguqula unyango kunye nokunyamekelwa kwezigulana ezichatshazelwa zezi zifo zintsonkothileyo zesihlunu sentliziyo.
Yintoni iCardiomyopathy?
Cardiomyopathy kubandakanya isihlunu sentliziyo ngokuthe ngqo, echaphazela amandla ayo okumpompa igazi ngokufanelekileyo. Ihlelwa kwiifom ezahlukeneyo, ezibandakanya i-dilated, hypertrophic, arrhythmogenic, kunye ne-restriction, nganye ineempawu ezithile ezinokukhokelela ekukhuleni okungaqhelekanga, ukuqina, okanye ukulahlekelwa kwe-elasticity of the heart muscle. Ezi meko zingabangela iingxaki ezinzulu ezifana nokuhluleka kwentliziyo, i-arrhythmias, kunye nokufa ngokukhawuleza, ngakumbi phakathi kwabancinci.
Ukuxilongwa kwangethuba kunye nokuHlolwa koSapho: Inyathelo lokuqala eliya eMpilweni
I-Cardiomyopathies, izifo zofuzo eziphazamisa umsebenzi wenhliziyo, zifuna ingqalelo ekhethekileyo ekuxilongweni kwangaphambili kunye nokuhlolwa kwentsapho. Ukuchongwa kwesi sifo kumanqanaba okuqala kubalulekile ekuthinteleni iingxaki ezinzulu, ezinje ngokusilela kwentliziyo, enye yezona zizathu ziphambili zokulaliswa esibhedlele e-Itali. Le ndlela ayijolise kuphela ekukhuseleni impilo yezigulane kodwa nokunciphisa kakhulu iindleko zenkqubo yezempilo yesizwe, ngoku iqikelelwa ngaphezu kwe-650 yezigidi zee-euro ngonyaka.
Ukubhekisa kuLawulo oluDibeneyo lwezigulane
Ingxelo igxininisa imfuneko ulawulo lwesigulane oludibeneyo, ebandakanya iingcali ezivela kumacandelo ahlukeneyo. Injongo kukudala indlela yokunyamekela kunye neyobuchule enokuqinisekisa ukuba izigulane zikwazi ukufikelela ngokukhawuleza kunye nokulungelelaniswa kokunyamekela abakufunayo. Oku kufuna intsebenziswano esondeleyo phakathi kwee-cardiologists, i-geneticists, oogqirha bezononophelo eziphambili, kunye nezinye iingcali ezibandakanyekayo ekunyamekelweni kwe-cardiomyopathies.
Ukwenziwa lula kweeNdlela zokuKhathalela
Enye ingongoma ephambili kukwenza lula kunye nokulungelelaniswa kweendlela zokhathalelo. Ukunciphisa ubunzima be-bureaucratic kunye iinkqubo zeklinikhi zinokuthetha ixesha elifutshane lokulinda izigulane kunye nokufikelela ngokuthe ngqo kunyango oluyimfuneko. Le njongo ihambelana nomnqweno wokuphucula amava esigulane ngokubanzi kunye nokwandisa ukusetyenziswa kwezibonelelo zempilo.
Ulwazi kunye neMfundo: Iintsika zokulwa ne-Cardiomyopathies
Ukukhuthaza ulwazi olucacileyo nolufikelelekayo kwizigulane, kunye nokuqeqeshwa okuqhubekayo kwabasebenzi bezempilo, yinto ebalulekileyo yesicwangciso esichazwe kwingxelo. Ukufundisa izigulane ngemeko yazo kunye neendlela ezifanelekileyo zokulawula izifo zemihla ngemihla zibalulekile ekuphuculeni umgangatho wobomi babo. Kwangaxeshanye, ukuqinisekisa ukuba oogqirha kunye neengcali zihlala zisexesheni malunga nophuhliso lwamva nje lwezonyango kunye noxilongo lungenza umahluko kwimpumelelo yonyango.
Ukubhekisa kwiNethiwekhi yeSizwe yeCardiomyopathies
Inyathelo, inxalenye ye “I-cardiomyopathies ibalulekile” iprojekthi ekhuthazwa ngu I-Bristol Myers squibb, ijolise ekukhuliseni ulwazi phakathi koluntu kunye nabenzi bomgaqo-nkqubo malunga nokubaluleka kwendlela elungelelanisiweyo kunye nentsha ekulweni ne-cardiomyopathies. Ukuseka iNethiwekhi yeSizwe ye-Cardiomyopathies inokumela inyathelo elilandelayo elibalulekileyo ekuphuculeni umgangatho wokunyamekela kunye nobomi bezigulane ezichaphazelekayo kwezi meko, ukuqinisekisa ukufikelela kwabo kunyango olulungileyo olukhoyo.
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