Ngaba lixesha lokunika umntwana wakho iyeza elithi (Elosulfase alfa)? Masithethe nge (Mucopolysaccharidosis type IVA - Morquio A syndrome)!

Usenokuba ukhe weva ngeli yeza elibizwa ngokuba yi-`(Elosulfase alfa)` emva kokuba ugqirha ekuxelele ukuba umntwana wakho unesifo esingaqhelekanga esibizwa ngokuba yi-`(Mucopolysaccharidosis type IVA)` okanye `(Morquio A syndrome)`. Ngexesha elinje, kuyinto eqhelekileyo ukuba izinto ezininzi zifike engqondweni kwaye kuphakame imibuzo emininzi. Ngoko ke, namhlanje siza kuthetha ngeli yeza, eli yeza ngokweenkcukacha, ngendlela onokuyiqonda, kulungile?

Yintoni le yeza? Masifunde nge-`(Elosulfase alfa)`?

Ngamafutshane, `(Elosulfase alfa)` lunyango lokutshintsha iienzyme . Usenokuba uzibuza, "Yintoni i`enzyme` ?" Cinga ngale ndlela: umzimba wethu ufana nomzi-mveliso omkhulu. Kukho abasebenzi abancinci kule mzi-mveliso ukugcina inxalenye nganye yenkqubo isebenza kakuhle kwaye icwangcisiwe. Yiyo loo nto iienzymes ziyiyo. Ezi enzymes zibalulekile kwiinkqubo ezininzi ezibalulekileyo zeekhemikhali ezenzeka ngaphakathi emizimbeni yethu.

Ngoku, kwimeko ye-`(Mucopolysaccharidosis type IVA)` okanye `(Morquio A syndrome)`, okwenzekayo kukuba i-enzyme ekhethekileyo efunekayo emzimbeni wethu ayisebenzi kakuhle okanye ayisebenzi kakuhle. Xa le enzyme ingekho, ezinye izinto emzimbeni ziqala ukuqokelelana endaweni yokuqhekeka ngokufanelekileyo. Yiyo le nto ibangela iingxaki ezahlukeneyo emathanjeni, kwi-cartilage, emehlweni, nakwinkqubo yokuphefumla.

Ngoko ke, eli yeza libizwa ngokuba yi-`(Elosulfase alfa)` lisetyenziselwa ukubonelela nge-enzyme engekhoyo ngaphandle. Oku kufana nokuqesha omnye umntu ukuba athathe indawo yomsebenzi olahlekileyo kumzi-mveliso. Oku akunakuphilisa ngokupheleleyo isifo. Nangona kunjalo, kunokunceda ukulawula iimpawu kwaye kwenze ubomi bube lula kancinci. Uninzi lwexesha, uya kufumana eli yeza phantsi kwegama lophawu lwe-`(Vimizim)`.

Zeziphi izinto ekufuneka uzixelele ugqirha?

Ngaphambi kokuba uqalise eli yeza, kubaluleke kakhulu ukuxelela iqela lakho lezempilo (umz. ugqirha, umongikazi ) yonke into ekufuneka uyazi malunga nempilo yakho neyengane yakho. Qiniseka ukuba ubaxelela ngezi zinto ngokukodwa:

• Ukuba okwangoku unomkhuhlane okanye naluphi na usulelo .
• Ukuba unesifo sokuphefumla xa ulele, abanye abantu bayayeka ukuphefumla okwethutyana ngelixa belele baze baphinde baqalise ukuphefumla. Yimeko leyo.
• Ukuba ukhe waba ne-allergy kwiyeza `(Elosulfase alfa)` ngaphambili, nakweyiphi na enye iyeza, uhlobo lokutya, ngamanye amaxesha kwiidayi, kwizithinteli, njl. Sixelele, nokuba yinto encinci.
• Ukuba ukhulelwe okanye uzama ukukhulelwa.
• Ukuba ungumama oncancisayo.

Olu lwazi luluncedo kakhulu kugqirha okanye umongikazi ukuba enze izigqibo ngaphambi kokuba aqalise amayeza.

Ulisebenzisa njani eli yeza?

Eli yeza `(Elosulfase alfa)` linikwa njenge `infusion` emthanjeni. Oko kukuthi, linikwa njengesisombululo setyuwa, eli yeza lifunxwa kancinci emzimbeni. Le ayisiyonto inokwenziwa ekhaya. Olu nyango lwenziwa esibhedlele okanye eklinikhi, phantsi kweliso lengcali yezonyango eqeqeshiweyo (ugqirha okanye umongikazi).

Thetha nogqirha wakho wabantwana malunga nokunika abantwana eli yeza. Kwezinye iimeko ezikhethiweyo, eli yeza linokunikwa abantwana abaneminyaka emi-5 ubudala, kodwa kukho amanyathelo okhuseleko ekufuneka athathwe.

Kubalulekile: Ukuba nabani na ucinga ukuba uthathe eli yeza kakhulu (ukugqithisa), kufuneka atsalele umnxeba ngokukhawuleza kwigumbi likaxakeka elikufutshane okanye kwiziko lokulawula ityhefu.

Enye into, eli yeza limiselwe wena wedwa. Musa ukwabelana ngalo nabanye abantu nangasiphi na isizathu . Imeko yomntu wonke yahlukile, ngoko ke ngumntu olinike lona kuphela omele alisebenzise.

Yintoni omawuyenze ukuba uphoswe yidosi yeyeza?

Kubaluleke kakhulu ukusela amayeza akho ngexesha nangosuku lokubonana nogqirha, kuba olu lunyango oluhlala ixesha elide. Ukuba awukwazi ukugcina idinga lakho elicwangcisiweyo, fowunela ugqirha wakho okanye ingcali yezempilo ngokukhawuleza uze ubazise. Baza kukuxelela into omawuyenze ngokulandelayo.

Ngaba kukho iingxaki ngamanye amayeza?

Akukho zifundo zibanzi ezenziweyo malunga nendlela eli yeza (i-Elosulfase alfa) elisebenzisana ngayo namanye amayeza. Oku kuthetha ukuba linokusebenzisana namanye amayeza owasebenzisayo.

Ngoko ke, yenza uluhlu lwamayeza onke owasebenzisayo (abhalwe ngugqirha, athengiswa ngaphandle kwemvume kagqirha, amayeza esintu, iivithamini, izongezo zokutya, njl.njl.) uze uwanike ugqirha wakho. Kwakhona, qiniseka ukuba uyamxelela ugqirha wakho ukuba uyatshaya, usela utywala, okanye usebenzisa ezinye iziyobisi ezingekho mthethweni. Ezinye izinto zinokusebenzisana nale mithi, oko kuthetha ukuba zinokuchaphazela enye kwenye.

Zeziphi izinto ekufuneka uzilumkele xa usebenzisa eli yeza?

Xa benikwa eli yeza, abanye abantu baba neempendulo ezinobungozi kwi-allergy.Oku kungenzeka. Le yinto ekufuneka uyilumkele. Ukuze unciphise le ngozi, ungacelwa ukuba uthathe amanye amayeza (afana ne-antihistamine) ngaphambi kokuba unikwe amayeza. Kubalulekile ukuthatha amayeza kanye njengoko ugqirha wakho ekuxelela.

Ngalo lonke ixesha unikwa eli yeza, imeko yakho iya kuhlolwa ngononophelo ziingcali zezempilo. Ngoko ke akukho nto inokubangela uxhalabe ngayo. Baza kukunyamekela.

Zeziphi iziphumo ebezingalindelekanga ezinokubakho?

Njengalo naliphi na iyeza, `(i-Elosulfase alfa)` inokubangela ezinye iziphumo ebezingalindelekanga. Nangona kunjalo, ayinguye wonke umntu ozifumanayo. Ezinye ziyingozi kakhulu, ngelixa ezinye zingeyonto inkulu.

Iziphumo ebezingalindelekanga ekufuneka uxelele ugqirha wakho ngazo ngoko nangoko

Ukuba ufumana naziphi na kwezi mpawu zilandelayo, kufuneka uxelele ugqirha wakho okanye ingcali yezempilo ngokukhawuleza:

• Iimpawu ze-allergy: ukurhawuzelela kwesikhumba, amaqhuqhuva, ukurhawuzelela, okanye ukudumba kobuso, imilebe, okanye ulwimi.
• Ubunzima bokuphefumla: Ukuziva ngathi unengxaki yokuphefumla, ukuziva ngathi uyaphefumla.
• Intlungu yesifuba okanye ukuxinana: Ukuziva uxinene esifubeni, intlungu evela ngaphakathi esifubeni.
• Ukukhwehlela: Ukuba ukhwehlela ngendlela engaqhelekanga.
• Uxinzelelo lwegazi oluphantsi: Usenokuziva unesiyezi kwaye amehlo akho asenokujika abe luhlaza okwesibhakabhaka.

Ukuba ubona into efana nale, musa ukulibazisa, kulungile?

Iziphumo ebezingalindelekanga ezingaqhelekanga, kodwa kufuneka zixelwe kugqirha ukuba ziyaqhubeka

Ezi zinto azisoloko zimbi kangako, kodwa ukuba ziyaqhubeka, kwaye ukuba ziyakukhathaza, kulungile ukuxelela ugqirha wakho:

• Ukugodola: Usenokuziva ugodola okanye uqhaqhazela xa unikwa iyeza okanye emva nje kokuba linikwe.
• Umkhuhlane: Umzimba usenokuba shushu kwaye ube nomkhuhlane.
• I-Headrest (`hisaradaya`): Njengentloko eqhelekileyo .
• Isicaphucaphu, ukuhlanza: Usenokuziva ngathi isisu sakho siyajika okanye uzive ngathi uza kuhlanza.
• Intlungu yesisu: Ukungakhululeki okanye intlungu encinci esiswini.
• Ukudinwa: Usenokuziva udiniwe kwaye ungenabomi.

Kubalulekile: Olu luhlu alubandakanyi zonke iziphumo ebezingalindelekanga. Ukuba ubona enye into engaqhelekanga, thetha nogqirha wakho ngayo.

Uligcina phi iyeza?

Asinto omele uyixhalabele le. Ngenxa yokuba eli yeza libizwa ngokuba yi-`(Elosulfase alfa)` linikwa esibhedlele okanye ekliniki, akufuneki ulithathe uliyise ekhaya uligcine. Ngoko ke ungakhathazeki ngalo.

Okokugqibela, ezona zinto zibalulekileyo ekufuneka uzikhumbule (Umyalezo Wokuya Ekhaya)

Kulungile, ngoko ke, ngokwento esithethe ngayo, ndicinga ukuba uyiqonda kakuhle iyeza elithi `(Elosulfase alfa)`. Khumbula, `(Mucopolysaccharidosis type IVA)` yimeko enzima, kwaye unyango olunikwayo ngayo nalo lukhethekile.

• Eli yeza alinyangi esi sifo, kodwa linceda ukulawula iimpawu kwaye lenze ubomi bube lula kancinci.
• Ngaphambi kokuba uqale amayeza, ungalibali ukunika ugqirha wakho inkcazo epheleleyo yempilo yakho.
• Eli yeza linikwa esibhedlele, njenge-infusion.
• Qaphela iziphumo ebezingalindelekanga, ingakumbi ukuba ufumana iimpawu zokunganyamezelani komzimba, kwaye xelela ugqirha wakho ngoko nangoko.
• Ukuba unemibuzo okanye amathandabuzo, buza ugqirha okanye umongikazi. Bakho ukuze bakuncede.

Ukuphila nale meko kunokuba nzima. Kodwa ngengcebiso efanelekileyo yezonyango, inkxaso, nothando, olu hambo lunokwenziwa. Khumbula, awuwedwa.

i- elosulfase alfa, i-vimizim, i-mucopolysaccharidosis type IVA, i-MPS IVA, i-Morquio A syndrome, ukutshintshwa kwee-enzyme, ukufakwa kwe-infusion, iziphumo ebezingalindelekanga