Ngezinye izikhathi sizwa ngezifo ezingavamile kakhulu, esingakaze sizwe ngisho nangamagama azo. Isifo sikaGaucher, noma `(Isifo sikaGaucher)`, singesinye sezifo ezingavamile ezibangelwa izimbangela zofuzo. Nakuba ukuphila nesimo esinjalo kuyinselele, ngokuthuthuka kwezokwelapha zanamuhla, kunezindlela zokwelapha ezinhle eziletha impumuzo kuzo. Namuhla sizokhuluma ngenye yezindlela zokwelapha ezinjalo, umuthi wokugomela i-`Velaglucerase alfa`.
Kalula nje, siyini isifo sikaGaucher?
Ukuze siqonde lokhu, ake sicabange ngemizimba yethu njengefektri enkulu. Kule fektri, kunezisebenzi ezikhethekile ezenza imisebenzi ehlukene ukuze konke kusebenze kahle. Lezi zisebenzi ziyilokho esikubiza ngokuthi 'ama-enzyme'. I-enzyme ngayinye inomsebenzi othile eyabelwe wona.
Kumuntu onesifo i-Gaucher, enye yalezi enzyme, noma enye yezisebenzi, ayitholakali ngokwemvelo. Ngenxa yalokho, ezinye izinto ezinamafutha emzimbeni azikwazi ukuhlakazwa kahle futhi zisuswe njengemfucuza. Lezi zinto bese ziqala kancane kancane ukuqongelela ezithweni ezifana nesibindi, udende, kanye nomnkantsha wamathambo. Lena imbangela eyinhloko yezimpawu.
Ngakho-ke iyini indima yalo muthi wokugomela i-Velaglucerase alfa?
I-`Velaglucerase alfa` (igama lomkhiqizo elithi `VPRIV`) ifana 'nesisebenzi esithatha indawo' esidalwe ososayensi elabhorethri ukuze sithathe indawo yesisebenzi esilahlekile efektri. Uma sikhuluma iqiniso, lena yi-enzyme ekhiqizwa ngokwenziwa ukuze ithathe indawo ye-`enzyme' iziguli zaseGaucher ezingenayo emizimbeni yazo.
Uma lo muthi unikezwa umzimba, uthatha umsebenzi owawumisiwe, uhlukanise amafutha, futhi usize ekulawuleni izimpawu.
Into ebaluleke kakhulu: Lokhu akulona ikhambi lesifo iGaucher. Kodwa-ke, kungasiza ekulawuleni izimpawu, kunciphise ukulimala kwezitho zomzimba, futhi kukusize uphile impilo engcono.
Lomuthi unikezwa kanjani?
Lona akuwona umuthi ongawusebenzisa ekhaya. I-Velaglucerase alfa iwumjovo onikezwa njengesixazululo sikasawoti emthanjeni (ukujova emthanjeni). Lokhu kwelashwa kunikezwa esibhedlela noma emtholampilo okhethekile, ngaphansi kokuqondisa kwabasebenzi bezokwelapha. Ngakho-ke asikho isizathu sokukhathazeka ngokuphepha kwakho.
Izinto okufanele uzitshele udokotela wakho ngaphambi kokuqala ukwelashwa
Kubaluleke kakhulu ukuthi udokotela wakho azi umlando wakho wezempilo ophelele ukuze anqume ukuthi lokhu kwelashwa kukufanele yini futhi kuphephile. Qiniseka ukuthi ubatshela ngalezi zinto ikakhulukazi.
- Ukungezwani komzimba onakho:Uma uke waba nanoma yikuphi ukungezwani komzimba neminye imithi ngaphambilini, ikakhulukazi i-imiglucerase (umuthi ofanayo), ukudla, amadayi, noma izithasiselo, qiniseka ukuthi utshela udokotela wakho ngakho.
- Ukukhulelwa: Uma ukhulelwe, noma ulindele umntwana maduze nje, kufanele utshele udokotela wakho.
- Ukuncelisa: Uma ungumama oncelisa ingane, yazisa udokotela wakho ngalokhu futhi.
- Ezinye izifo nemithi: Nikeza udokotela wakho uhlu oluphelele lwanoma yimiphi eminye imithi (ebhalwe ngudokotela noma ethengwa ngaphandle kwemithi kadokotela), imikhiqizo yamakhambi, namavithamini owaphuzayo. Kubalulekile futhi ukutshela udokotela wakho uma ubhema noma uphuza utshwala.
Ukusetshenziswa kwezingane
Lo muthi ngezinye izikhathi unikezwa izingane ezineminyaka engu-4 ubudala, kodwa kuphela ngaphansi kweseluleko esikhethekile sezokwelapha kanye nokuqapha. Uma ucabanga ukunikeza ingane yakho lokhu kwelashwa, khuluma nodokotela wezingane ngakho.
Yimiphi imiphumela emibi engaba khona yalo muthi?
Njenganoma yimuphi umuthi, umuthi wokugomela i-'Velaglucerase alfa' ungabangela imiphumela emibi kwabanye abantu. Kodwa-ke, akuwona wonke umuntu oyitholayo. Lokhu kungahlukaniswa ngezigaba ezimbili eziyinhloko. Ezinye zimbi kakhulu futhi kufanele zibikwe ngokushesha. Ezinye zivamile futhi zizophela ezinsukwini ezimbalwa.
| Umphumela ongemuhle | Okudingeka ukwenze |
|---|---|
| Imiphumela emibi kakhulu okufanele uyibike kudokotela wakho noma kumhlengikazi ngokushesha | |
| Ukusabela kokungezwani komzimba (Ukucasuka kwesikhumba, ukulunywa, ukuvuvukala kobuso, izindebe, ulimi) | Lokhu kungenzeka ngesikhathi noma ngemva kokunikezwa umuthi. Yazisa abasebenzi bezokwelapha ngokushesha . |
| Izinkinga zokuphefumula | Lokhu kungaba uphawu olubi kakhulu. Bika ngokushesha . |
| Isiyezi, umfutho wegazi ophezulu noma ophansi, ukushaya kwenhliziyo okusheshayo | Uma lokhu kwenzeka ngesikhathi sokuphathwa komuthi, tshela umhlengikazi noma udokotela ngokushesha. |
| Ukopha noma ukuklwebheka okungavamile | Tshela udokotela wakho uma uzwa imihuzuko engachazeki noma uma unenkinga yokumisa ukopha. |
| Imiphumela emibi evamile okufanele ibikwe kudokotela uma iqhubeka noma ikhathaza | |
| Ikhanda elibuhlungu, izinhlungu zomzimba, ubuhlungu emhlane, ubuhlungu bamathambo noma bamalunga | Lezi zivamile. Uma ziqhubeka, khuluma nodokotela wakho. |
| Umkhuhlane, ukubanda, umphimbo obuhlungu | Kungase kwenzeke ngosuku lomuthi noma kamuva. Tshela udokotela wakho uma kukukhathaza. |
| Isicanucanu, ubuhlungu besisu | Ngokuvamile kuyaphela. Uma kuqhubeka, yazisa udokotela wakho. |
| Ukubomvu, ukulunywa, noma ubuhlungu endaweni yokujova | Lokhu kuvame ukuphulukiswa ngosuku olulodwa noma ezimbili. |
Lolu hlu aluhlanganisi yonke imiphumela emibi engaba khona. Uma uhlangabezana nanoma yini engavamile, ungesabi ukukhuluma nodokotela wakho ngayo.
Ezinye izinto okufanele uzikhumbule ngesikhathi sokwelashwa
- Ukuthola ukwelashwa ngesikhathi: Ukuze uthole okuningi kulokhu kwelashwa, kubaluleke kakhulu ukuthola ukwelashwa ngesikhathi nangesikhathi. Uma ungakwazi ukuya esibhedlela ngosuku oluhleliwe, yazisa udokotela noma isibhedlela kusenesikhathi bese uhlela i-aphoyintimenti yosuku olulandelayo.
- Ukuhlolwa kwezokwelapha:Udokotela uzokuxilonga njalo ukuze abone ukuthi ukwelashwa kusebenza kahle kangakanani nokuthi kuthinta kanjani umzimba wakho. Ngakho-ke, ungaphuthelwa yinoma yikuphi ukuvakashela emtholampilo.
- Ukweqisa umthamo: Lona umuthi onikezwa esibhedlela, ngakho-ke amathuba okuba lokhu kwenzeke mancane kakhulu. Kodwa-ke, uma ucabanga ukuthi usuthathe lo muthi omningi kakhulu, shayela ngokushesha i-National Poisons Information Centre e-Colombo National Hospital , noma uye e-Emergency Treatment Unit (ETU) yesibhedlela esiseduze.
- Lokhu kungokwakho kuphela: Lo muthi unikezwe isimo sakho kanye nohlobo lomzimba wakho. Ngakho-ke, ungabelani ngalo muthi nanoma ubani omunye nganoma yisiphi isizathu.
Umlayezo Wokuya Nawe Ekhaya
- I-Velaglucerase alfa iyindlela yokwelapha ama-enzyme okwenziwa asetshenziswa ukulawula izimpawu zesifo sikaGaucher.
- Nakuba lokhu kungelaphi ngokuphelele lesi sifo, kusiza kakhulu ekuthuthukiseni izinga lempilo yeziguli.
- Lokhu kwelashwa kunikezwa ngomthambo esibhedlela, ngakho akudingeki ukhathazeke ngokuphepha kwakho.
- Ngaphambi kokuqala ukwelashwa, tshela udokotela wakho ngakho konke ukungezwani komzimba kwakho, eminye imithi oyithathayo, kanye nezimo zempilo.
- Uma kuvela imiphumela emibi kakhulu (ubunzima bokuphefumula, ukungezwani komzimba) , yazisa abasebenzi bezokwelapha ngokushesha.
- Kubaluleke kakhulu ukuhlala uxhumana nodokotela wakho njalo futhi uye emitholampilo ehleliwe.
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