Naglazyme
Isikhubekiso seGalsulfase sisetshenziswa ekwelapheni izimpawu zesifo esitholakala ngokuzalwa esibizwa ngokuthi i-mucopolysaccharidosis (MPS VI) noma i-Maroteaux-Lamy syndrome. Lolu dokotela luthuthukisa ikhono lokuphila nokukhuphuka izitebhisi kubantu abaswele i-enzyme ethile ebizwa nge-N-acetylgalactosamine 4-sulfatase emzimbeni. Lolu dokotela kufanele luphiwe kuphela ngudokotela noma ngaphansi kokunakekelwa kwakhe okuqondile. Lo mkhiqizo uyatholakala ngezindlela zokulinganisa ezilandelayo:
Ekucineni kokusebenzisa imithi, izingozi zokuthatha imithi kufanele ziqhathaniswe nezinzuzo ezizoletha. Lo ngumqulu ozothatha wena nodokotela wakho. Kule mithi, okulandelayo kufanele kucabangelwe: Tshela udokotela wakho uma uke waba nanoma yiluphi uhlobo oluhlwempuzekile noma oluhambisana nokwaleka kule mithi noma kwezinye izidakamizwa. Tshela futhi ochwepheshe bakho bezempilo uma unezinye izinhlobo zokwaleka, njengokudla, izibenge, izigcini, noma izilwane. Ngomkhiqizo ongenayo iresiphi, funda ilebula noma izithako zephakheji ngokucophelela. Izifundo ezifanele ezenziwe kuze kube manje azibonakalisi izinkinga ezikhethekile zezingane ezizobeka umkhawulo ekusebenziseni ukugxilwa kwe-galsulfase kubantwana abaneminyaka emi-5 nangaphezulu. Ukuphepha nokuphumelela kuye kwaqiniswa. Azikho izifundo ezifanele ezenziwe ngokuphathelene nobudlelwano bobudala nemiphumela yokugxilwa kwe-galsulfase kubantu abadala. Ukuphepha nokuphumelela akukaqiniswanga. Ayikho izifundo ezifanele kubesifazane zokunquma ingozi yengane uma usebenzisa le mithi ngesikhathi sokuncelisa. Linganisa izinzuzo ezingaba khona nezingozi ezingaba khona ngaphambi kokuthatha le mithi ngesikhathi sokuncelisa. Nakuba ezinye izidakamizwa kufanele zingasetshenziswa ndawonye, kwezinye izimo izidakamizwa ezimbili ezahlukene zingasetshenziswa ndawonye ngisho noma kungenzeka ukuthi kube khona ukusebenzisana. Kulezi zimo, udokotela wakho angase afune ukushintsha umthamo, noma ezinye izinyathelo zokuphepha zingadingeka. Tshela ochwepheshe bakho bezempilo uma uthatha noma iyiphi enye imithi yesikripthi noma engekho esikripthi (over-the-counter [OTC]). Ezinye izidakamizwa akufanele zisetshenziswe ngesikhathi noma eduze kwesikhathi sokudla ukudla noma ukudla izinhlobo ezithile zokudla njengoba kungenzeka kube khona ukusebenzisana. Ukusebenzisa utshwala noma utshaba ngezinye izidakamizwa kungabangela ukusebenzisana. Xoxa nochwepheshe bakho bezempilo ngokusetshenziswa kwemithi yakho ngokudla, utshwala, noma utshaba. Ukuba khona kwezinye izinkinga zezokwelapha kungathinta ukusetshenziswa kwale mithi. Qiniseka ukuthi utshela udokotela wakho uma unezinye izinkinga zezokwelapha, ikakhulukazi:
Udokotela noma omunye ochwepheshe bezempilo oqeqeshwe ngokufanele uzokunika wena noma ingane yakho le miyeke isikhungweni sezempilo. Lolu lwemiyeke lunikezwa nge-IV catheter ebekwe kwenye yezinsizi zakho. Lolu lwemiyeke kufanele lunikezwe kancane, ngakho-ke i-IV izohlala ibekwe okungenani amahora angu-4. Ngokuvamile lunikezwa kanye ngesonto. Wena noma ingane yakho ningase niphinde namanye amayeke (isib. imithi yokwelapha ukwanda, imithi yokwelapha ubushushu bomzimba) imizuzu engama-30 kuya kwengu-60 ngaphambi kokuthi niqale ukwelashwa ngale miyeke.
Umshwana wokuzihlangula: I-August iyinkundla yolwazi lwezempilo futhi izimpendulo zayo azihlanganisi iseluleko sezokwelapha. Njalo thintana nochwepheshe bezokwelapha onelayisensi eduze nawe ngaphambi kokwenza noma yiluphi ushintsho.