Ngaba wena okanye umntu omaziyo unesifo segazi esingaqhelekanga esibizwa ngokuba yiParoxysmal Nocturnal Hemoglobinuria , okanye i-PNH ngamafutshane? Isenokuvakala inzima, kodwa ngamazwi alula, yimeko apho iiseli ezibomvu zegazi emizimbeni yethu ziwohloka ngaphambi kwexesha. Oku kunokukhokelela kwiingxaki ezininzi, kubandakanya i-anemia, ukudinwa, kunye nokuqhekeka kwegazi. Ngoko ke namhlanje siza kuthetha ngesitofu esibizwa ngokuba yiPegcetacoplan (esibizwa ngokuba yi-peg-seta-co-plan) esizise ithemba elitsha kubantu abaninzi abanale meko.
Yintoni iPegcetacoplan? Isebenza njani?
Cinga ngeeseli zethu ezibomvu zegazi njengezithuthi ezincinci ezithwala ioksijini emzimbeni wonke. Kumntu one-PNH, inkqubo yomzimba yokuzikhusela (umkhosi osikhusela kwizifo) ngempazamo icinga ukuba ezi seli zibomvu zegazi zilutshaba kwaye izihlasela ize izitshabalalise. Oku kungenxa yokungasebenzi kakuhle kwenxalenye yenkqubo yomzimba yokuzikhusela ebizwa ngokuba yi-Complement system .
Kulapho ke iyeza elibizwa ngokuba yiPegcetacoplan lingena khona. Eli gonyo lifana nomkhuseli okrelekrele. Lisebenza ngokumisa inxalenye yenkqubo yomzimba yokuzikhusela ehlasela ngempazamo kwaye ikhusele iiseli zethu ezibomvu zegazi. Oku kulawula ukuwohloka kweeseli ezibomvu zegazi kwaye kunciphisa kakhulu iimpawu ze-PNH.
Ngamafutshane, iPegcetacoplan liyeza elisebenza njengekhaka elikhusela iiseli zakho ezibomvu zegazi.
Izinto ekufuneka uzixelele ugqirha wakho ngaphambi kokusebenzisa eli yeza
Ngenxa yokuba eli liyeza elibaluleke kangaka, kubalulekile ukuxoxa ngezinto ezithile ngokukhululekileyo nogqirha wakho ngaphambi kokuba uqale unyango. Ukuze ukhuseleke, musa ukuzifihla ezi zinto.
- Ngaba unazo naziphi na izifo okwangoku? Xelela ugqirha wakho ngazo naziphi na izifo, ezinje ngomkhuhlane, umkhuhlane, ukukhwehlela, okanye umphimbo obuhlungu.
- Ngaba unayo nayiphi na enye i-allergies? Hayi nje kuphela kweli yeza, kodwa nakweminye imithi, ukutya, okanye izithinteli, nceda usazise ngazo.
- Ngaba ukhulelwe? Okanye uceba ukukhulelwa? Kubalulekile ukufumana ingcebiso kagqirha ngaphambi kokuba uthathe isigqibo sokusebenzisa eli yeza ngexesha lokukhulelwa.
- Ingaba ungumama oncancisayo? Kufuneka uthethe nogqirha wakho malunga nokusebenzisa eli yeza ngelixa uncancisa.
Indlela yokusebenzisa eli yeza?
I-Pegcetacoplan yinaliti onokuyijova ekhaya. Yinaliti engaphantsi kwesikhumba . Isenokubonakala isoyikisa kancinci ekuqaleni, kodwa ungakhathazeki.
Ngokwesiqhelo, ugqirha wakho okanye umongikazi oqeqeshiweyo uya kukubonisa ngokucacileyo indlela yokuphatha olu gonyo ngokufanelekileyo.
- Indlela yokulungisa ibhotile yeyeza.
- Ubungakanani obufanelekileyo bonyango olufanele luthathwe kwisirinji.
- Iindawo ezifanelekileyo zokufaka inaliti (idla ngokuba sisisu, indawo yethanga).
- Indlela yokucoca ulusu.
Baza kukunceda ukuba uqhele konke oku. Iziphumo ezilungileyo zifumaneka ngokufumana isitofu njengoko kumiselwe ngugqirha, ngeentsuku ezicwangcisiweyo, kwaye phantse ngexesha elifanayo .
Ukulahlwa ngokukhuselekileyo kweenaliti kunye neesirinji
Oku kubaluleke kakhulu. Ungaze ulahle iinaliti neesirinji ezisetyenzisiweyo enkunkuma. Kuyingozi kakhulu kuwe, kusapho lwakho, nakwindalo esingqongileyo.
Kukho isitya esikhethekileyo se-sharps esenzelwe le njongo. Ungabuza ugqirha wakho okanye ikhemesti apho ufumana khona amayeza akho. Babuze indlela yokulahla isitya ngokukhuselekileyo xa sigcwele.
Izinto ekufuneka uzilumkele xa usebenzisa iyeza
Udinga ukunyamekela impilo yakho kancinci ngelixa usebenzisa eli yeza.
- Ukuhlolwa rhoqo kwezonyango: Ugqirha wakho uya kukucela rhoqo ukuba wenze uvavanyo lwegazi. Qiniseka ukuba uyakwenza oku ukuze ubone ukuba unyango lusebenza njani. Qiniseka ukuba uyaya kugqirha wakho.
- Zikhusele kwiintsholongwane: Ekubeni eli yeza lithintela ukusebenza kwenxalenye yenkqubo yokuzikhusela komzimba, umngcipheko wokufumana ezinye izifo unokwanda kancinci. Ke ngoko, ukuba ufumana iimpawu ezinje ngomkhuhlane, ukubanda, umphimbo obuhlungu, ukukhwehlela, amanxeba angapholiyo, okanye iintlungu xa uchama , musa ukuzinyanga kwaye utsalele umnxeba ugqirha wakho ngoko nangoko . Nciphisa ukutyelela kwakho iindawo apho abantu bagula khona.
Iziphumo ebezingalindelekanga ezinokubakho zeyeza
Njengayo nayiphi na iyeza, iPegcetacoplan inokubangela ezinye iziphumo ebezingalindelekanga. Ezinye zezi ziphumo kufuneka zixelwe ngoko nangoko, ngelixa ezinye zingengobungozi kangako.
| Uhlobo lwesiphumo esibi | Iimpawu |
|---|---|
| Izinto ekufuneka uzixelele ugqirha wakho ngoko nangoko | |
| Iimpendulo ze-Allergic | Ukurhawuzelela kwesikhumba, ukurhawuzelela, ukudumba kobuso, imilebe, ulwimi okanye umqala, ubunzima bokuphefumla. |
| Iimpawu zosulelo | Umkhuhlane, ukubanda, ukukhwehlela, umphimbo obuhlungu, amanxeba angapholiyo, usulelo lomchamo, kunye nokungakhululeki kakuhle. |
| Izinto ezingaqhelekanga ukuba zimbi, kodwa kufuneka zixelwe kugqirha ukuba ziyaqhubeka | |
| Ukungonwabi kwindawo yokutofa | Intlungu, ukuba bomvu, okanye ukudumba okuncinci kwindawo yokutofa. |
| Ezinye iingxaki ezincinci | Urhudo, ukudinwa, iintlungu zesisu. |
Kuthekani ukuba ndiphoswa lidosi leyeza?
Ukuba uphoswe yidosi, yithathe ngokukhawuleza xa ukhumbula. Nangona kunjalo, ukuba sele kuza kufuneka uyithathe idosi elandelayo, yitsibe idosi oyiphosileyo uze uthathe idosi elandelayo ngexesha elicwangcisiweyo. Ungaze uthathe iidosi ezimbini ngaxeshanye.
Kuthekani ukuba ndithatha amayeza amaninzi kakhulu?
Ukuba ucinga ukuba ngempazamo uthathe eli yeza kakhulu, inyathelo elikhawulezileyo kukuya kwiSebe lezeMpilo eziNgxamisekileyo (ETU) lesibhedlele esikufutshane okanye utsalele umnxeba iZiko loLwazi lweeTyhefu leSizwe kwiSibhedlele sikaZwelonke saseColombo .
Ungayigcina njani iyeza?
- Gcina eli yeza efrijini . Musa ukuligcina efrijini/efrijini enzulu.
- Khupha isitofu efrijini malunga nemizuzu engama-30 ngaphambi kokuba usinike uze usivumele sifikelele kubushushu begumbi.
- Kungcono ukuyigcina kwibhokisi yokuqala eyayifike kuyo, ukuze ikhuseleke ekukhanyeni.
- Gcina kude nabantwana kunye nezilwanyana zasekhaya.
- Musa ukusebenzisa amayeza aphelelwe lixesha.
Eli yeza lelakho kuphela. Lanikwa ngugqirha wakho, ngoko ke ungalabelani ngalo nabanye abantu.
Umyalezo Wokuya Ekhaya
- I-Pegcetacoplan yinaliti enikwa phantsi kolusu ethintela ukuqhekeka kweeseli ezibomvu zegazi kwisifo segazi esingaqhelekanga esibizwa ngokuba yi-PNH.
- Ngaphambi kokuba uqale eli yeza, xelela ugqirha wakho ngazo zonke iimeko zakho zempilo kunye nee-aleji.
- Kubaluleke kakhulu ukusela amayeza ngexesha elifanelekileyo nangedosi efanelekileyo.
- Ukuba ubonakalisa iimpawu zosulelo ezifana nomkhuhlane nokukhwehlela, funa ingcebiso kagqirha ngoko nangoko.
- Ungaze ulahle iinaliti neesirinji ezisetyenzisiweyo emgqomeni wenkunkuma. Sebenzisa isitya esikhethekileyo (iSharp Container) kuloo nto.
- Ukuba unemibuzo malunga nale yeza, ungoyiki ukubuza ugqirha wakho.
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