Ngamanye amaxesha siva ngezifo ezingaqhelekanga kakhulu, esingazange sive nangamagama azo. Isifo sikaGaucher, okanye `(Isifo sikaGaucher)`, sesinye sezifo ezingaqhelekanga ezibangelwa zizizathu zemfuza. Nangona ukuphila nemeko enjalo kuyingxaki, ngenxa yokuqhubela phambili kwezonyango zanamhlanje, kukho unyango olufanelekileyo oluzisa isiqabu kuzo. Namhlanje siza kuthetha ngonyango olunjalo, i-`Velaglucerase alfa` vaccine.
Ngamafutshane, yintoni isifo sikaGaucher?
Ukuze siqonde oku, masicinge ngemizimba yethu njengomzi-mveliso omkhulu. Kule mzi-mveliso, kukho 'abasebenzi' abakhethekileyo abenza imisebenzi eyahlukeneyo ukuze yonke into isebenze ngokufanelekileyo. Aba basebenzi ngabo sibabiza ngokuba 'ziienzyme'. I-enzyme nganye inomsebenzi othile eyabelwe wona.
Kumntu onesifo seGaucher, enye yezi enzymes, okanye enye yezisebenzi, ayifumaneki ngokwemvelo. Ngenxa yoko, ezinye izinto ezinamafutha emzimbeni azinakwahlulwa ngokufanelekileyo kwaye zisuswe njengenkunkuma. Ezi zinto emva koko ziqala ukuqokelelana kancinci kancinci kwizitho ezifana nesibindi, i-spleen, kunye nomongo wethambo. Le yeyona nto ibangela iimpawu.
Ngoko ke yintoni indima yale vaccine ye-Velaglucerase alfa?
I-'Velaglucerase alfa' (igama lophawu elithi 'VPRIV') ifana 'nomsebenzi othatha indawo' owenziwe ngoososayensi kwilebhu ukuze bathathe indawo yomsebenzi olahlekileyo kwifektri. Ngokuchanekileyo, le yi-enzyme eyenziwa ngokwenziwa ukuze ithathe indawo ye-'enzyme' engekhoyo emzimbeni wezigulane zaseGaucher.
Xa eli yeza linikwa umzimba, lithatha umsebenzi obumisiwe, liphule amafutha, kwaye linceda ukulawula iimpawu.
Eyona nto ibalulekileyo: Olu asilonyango lwesifo seGaucher. Nangona kunjalo, lunokunceda ekulawuleni iimpawu, lunciphise umonakalo kwizitho zomzimba, kwaye lukuncede uphile ubomi obungcono.
Linikwa njani eli yeza?
Eli asiloyeza onokulisebenzisa ekhaya. I-Velaglucerase alfa yinaliti enikwa njengesicombululo setyuwa emthanjeni (infusion emthanjeni). Olu nyango lunikwa esibhedlele okanye kwikliniki ekhethekileyo, phantsi kweliso labasebenzi bezonyango. Ngoko ke akukho sizathu sokukhathazeka ngokhuseleko lwakho.
Izinto ekufuneka uzixelele ugqirha wakho ngaphambi kokuba uqale unyango
Kubaluleke kakhulu ukuba ugqirha wakho ayazi imbali yakho epheleleyo yempilo ukuze abone ukuba olu nyango lukulungele na kwaye lukhuselekile. Qiniseka ukuba ubaxelela ngezi zinto ngokukodwa.
- Ii-aleji onazo:Ukuba ukhe waba nazo naziphi na ii-allergies kwamanye amayeza ngaphambili, ingakumbi i-imiglucerase (amayeza afanayo), ukutya, iidayi, okanye izithinteli, qiniseka ukuba uxelele ugqirha wakho ngazo.
- Ukukhulelwa: Ukuba ukhulelwe, okanye ulindele umntwana kungekudala, kufuneka uxelele ugqirha wakho.
- Ukuncancisa: Ukuba ungumama oncancisa umntwana, yazisa ugqirha wakho ngale nto.
- Ezinye izifo kunye namayeza: Nika ugqirha wakho uluhlu olupheleleyo lwawo nawaphi na amanye amayeza (abhalwe ngugqirha okanye athengiswa ngaphandle kwemvume kagqirha), iimveliso zezityalo, kunye neevithamini ozisebenzisayo. Kubalulekile ukuxelela ugqirha wakho ukuba uyatshaya okanye usela utywala.
Ukusetyenziswa kwabantwana
Eli yeza ngamanye amaxesha linikwa abantwana abaneminyaka emi-4 ubudala, kodwa kuphela phantsi kwengcebiso ekhethekileyo yezonyango kunye nolawulo. Ukuba ucinga ngokunika umntwana wakho olu nyango, thetha nogqirha wezingane ngalo.
Zithini iziphumo ebezingalindelekanga ezinokubakho zale yeza?
Njengayo nayiphi na iyeza, isitofu se-`Velaglucerase alfa` sinokubangela iziphumo ebezingalindelekanga kwabanye abantu. Nangona kunjalo, ayinguye wonke umntu ozifumanayo. Ezi zinokwahlulwahlulwa zibe ziindidi ezimbini eziphambili. Ezinye ziyingozi kwaye kufuneka zixelwe ngoko nangoko. Ezinye ziqhelekile kwaye ziya kuphela kwiintsuku ezimbalwa.
| Imiphumela | Oko kufuneka ukwenze |
|---|---|
| Iziphumo ebezingalindelekanga ezinzulu ekufuneka uzixele kugqirha wakho okanye kumongikazi wakho ngoko nangoko | |
| Iimpendulo ze-allergy (Ukurhawuzelelwa lusu, ukurhawuzelelwa, ukudumba kobuso, imilebe, ulwimi) | Ezi zinokwenzeka ngexesha okanye emva kokuba amayeza enikwe. Yazisa abasebenzi bezonyango ngoko nangoko . |
| Iingxaki zokuphefumla | Oku kungaba luphawu olubi kakhulu. Xela ngoko nangoko . |
| Isiyezi, uxinzelelo lwegazi oluphezulu okanye oluphantsi, ukubetha kwentliziyo ngokukhawuleza | Ukuba oku kwenzeka ngexesha lokunikwa amayeza, xelela umongikazi okanye ugqirha ngoko nangoko. |
| Ukopha okungaqhelekanga okanye ukukrweleka | Xelela ugqirha wakho ukuba ufumana imivumbo engachazekiyo okanye ukuba unengxaki yokuyeka ukopha. |
| Iziphumo ebezingalindelekanga eziqhelekileyo ekufuneka zixelwe kugqirha ukuba ziyaqhubeka okanye ziyakhathaza | |
| Intloko ebuhlungu, iintlungu zomzimba, iintlungu zomqolo, iintlungu zamathambo okanye amalungu | Ezi ziqhelekile. Ukuba ziyaqhubeka, thetha nogqirha wakho. |
| Umkhuhlane, ukubanda, umphimbo obuhlungu | Inokwenzeka ngomhla wokuthatha iyeza okanye kamva. Xelela ugqirha wakho ukuba iyakukhathaza. |
| Isicaphucaphu, iintlungu zesisu | Ihlala iphela. Ukuba iyaqhubeka, yazisa ugqirha wakho. |
| Ubomvu, ukurhawuzelela, okanye intlungu kwindawo yokujova | Oku kudla ngokuphiliswa emva kosuku okanye ezimbini. |
Olu luhlu alubandakanyi zonke iziphumo ebezingalindelekanga. Ukuba ufumana into engaqhelekanga, ungoyiki ukuthetha nogqirha wakho ngayo.
Ezinye izinto ekufuneka uzikhumbule ngexesha lonyango
- Ukufumana unyango ngexesha: Ukuze ufumane uncedo olupheleleyo kolu nyango, kubaluleke kakhulu ukufumana unyango ngexesha nangexesha. Ukuba awukwazi ukuya esibhedlele ngomhla omiselweyo, yazisa ugqirha okanye isibhedlele kwangaphambili kwaye ucwangcise idinga losuku olulandelayo.
- Uvavanyo lwezonyango:Ugqirha uza kukujonga rhoqo ukuze abone ukuba unyango lusebenza kakuhle kangakanani na kwaye luchaphazela njani umzimba wakho. Ngoko ke, ungaphoswa kutyelelo lweklinikhi.
- I-Overdose: Eli liyeza elisetyenziswa esibhedlele, ngoko ke amathuba okuba oku kwenzeke mancinci kakhulu. Nangona kunjalo, ukuba ucinga ukuba ulisele kakhulu eli yeza, fowunela iZiko loLwazi lweePoisons kwiSibhedlele sikaZwelonke saseColombo ngoko nangoko, okanye uye kwiYunithi yoNyango oluNgxamisekileyo (ETU) yesibhedlele esikufutshane.
- Oku kwenzelwe wena kuphela: Eli yeza limiselwe imeko yakho kunye nohlobo lomzimba wakho. Ngoko ke, musa ukwabelana ngeli yeza nabanye abantu nangasiphi na isizathu.
Umyalezo Wokuya Ekhaya
- I-Velaglucerase alfa lunyango lwe-enzymes olusetyenziswayo ukulawula iimpawu zesifo sikaGaucher.
- Nangona oku kungayinyangi ngokupheleleyo le sifo, kunceda kakhulu ekuphuculeni umgangatho wobomi bezigulane.
- Olu nyango lunikwa ngomthambo esibhedlele, ngoko ke akufuneki ukhathazeke ngokhuseleko lwakho.
- Ngaphambi kokuba uqale unyango, xelela ugqirha wakho ngazo zonke izinto ezikubangela ukuba ungabi namdla, amanye amayeza owasebenzisayo, kunye neemeko zempilo.
- Ukuba kuvela iziphumo ebezingalindelekanga ezinzulu (ubunzima bokuphefumla, i-allergies), yazisa abasebenzi bezonyango ngoko nangoko.
- Kubaluleke kakhulu ukuhlala unxibelelana rhoqo nogqirha wakho kwaye uye kwiikliniki ezicwangcisiweyo.
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