Ngaba nawe uyafuna ukwazi ngenaliti ye-Emicizumab? Masithethe ngayo!

Ngaba nawe unengxaki yokopha rhoqo ngenxa yeHemophilia A? Ngaba unengxaki yokuyeka ukopha nokuba unesilonda esincinci? Ukuba kunjalo, namhlanje siza kuthetha ngeyeza elitsha elinokwenza umahluko omkhulu ebomini bakho, lincede ekulawuleni ukopha. Igama leli yeza yi-Emicizumab. Ngoko ke, makhe sibone iinkcukacha ngalo?

Luhlobo luni lweyeza i-Emicizumab?

Ngamafutshane, i-Emicizumab yinaliti ekhethekileyo enceda abantu abane-hemophilia A ukuba bathintele ukopha okanye balawule ukopha ukuba sele besopha. Ubusazi na ukuba xa une-hemophilia A, umzimba wakho awunayo iproteni ebalulekileyo (i-factor VIII) enceda ukujiya kwegazi lakho? Ngoko ke eli yeza lisebenza ngokunceda ukulungisa loo ngxaki ngendlela eyahlukileyo kancinci, linceda ukujiya kwegazi lakho. Kufana nokutshintsha ibhuloho eliqhekekileyo okwethutyana ngenye into.

Eli yeza ngamanye amaxesha lingasetyenziswa ngugqirha wakho ngenxa yezizathu zonyango. Ngoko ke, ukuba ufuna ukwazi ukuba kutheni eli yeza limiselwe wena, qiniseka ukuba ubuza ugqirha wakho okanye ikhemesti apho uthenga khona eli yeza.

Eli yeza, i-Emicizumab, lifumaneka kakhulu kwimarike phantsi kwegama elithi Hemlibra . Kusenokwenzeka ukuba ukhe waliva elo gama ngaphambili.

Zeziphi izinto ezibalulekileyo ekufuneka ndizixelele ugqirha wam ngaphambi kokuba ndisebenzise eli yeza?

Ewe, oku kubaluleke kakhulu. Ngaphambi kokuba uqale olu tyando lwe-emicizumab, kukho izinto ezimbalwa ekufuneka uzixelele iqela lakho lokhathalelo. Kuba kufuneka bacinge ngokhuseleko lwakho.

• Ukuba une-allergy kule yeza, i-Emicizumab, okanye nayiphi na izithako zalo, nceda usixelele kuqala.
• Kwakhona, ukuba une-allergies kwezinye iziyobisi, ukutya, iidayi, okanye izithinteli, nceda usazise. Nokuba yinto encinci, kulungile ukusazisa.
• Kuya kufuneka uyikhankanye le nto ukuba ukhulelwe ngoku, okanye ukuba unethemba lokukhulelwa kungekudala .
• Ukuba ungumama oncancisayo, yazisa ugqirha wakho ngaloo nto.

Olu lwazi luya kuba luncedo kakhulu kugqirha wakho ekukhetheni unyango olufanelekileyo nolukhuselekileyo kuwe.

Ndingayisebenzisa njani kanye kanye le yeza?

Oku kuyinto ekufuneka uyiqonde. I-Emicizumab yinaliti efakwa ngaphantsi kwesikhumba. Oko kuthetha ukuba ifakwa kumaleko wamafutha phantsi kolusu, kungekhona nzulu kwimisipha. Usenokuba ukhe wazibona iinaliti ze-insulin zesifo seswekile, ezifana nezo.

Ungakhathazeki, ugqirha wakho, umongikazi, okanye omnye umsebenzi wezempilo oqeqeshiweyo uza kukufundisa ngokucacileyo indlela yokulungiselela eli yeza kunye nendlela yokuzinika (okanye umntu oza kukunceda) eli yeza. Kufuneka ukwenze kanye njengoko bekuxelela.

• Kubaluleke kakhulu ukusela amayeza akho rhoqo. Yisele kanye njengoko ugqirha wakho ekuxelele, rhoqo emva kweentsuku ezimbalwa, ngamaxesha achanekileyo.
• Ungaze uthathe ngaphezu kwedosi echazwe ngugqirha wakho, okanye uyithathe rhoqo.

Kubaluleke kakhulu: Ungaze ulahle iinaliti zakho ezisetyenzisiweyo kunye neesirinji kwinkunkuma. Ukwenza njalo kunokuba yingozi kumntu okhupha inkunkuma okanye nakubani na. Kukho isitya esikhethekileyo see-sharp esenzelwe ukugcina ii-sharp ezinokuthi zivalwe kakuhle. Cela i-pharmacist okanye ugqirha wakho akunike esinye. Baza kukuxelela indlela yokusilahla ngokukhuselekileyo xa sigcwele.

Kuza kwenzeka ntoni ukuba unika abantwana abancinci eli yeza?

Ukuba ugqirha wakho ugqiba kwelokuba umntwana wakho kufuneka anikwe i-emicizumab kuba ene-hemophilia A, thetha nogqirha wakho wezingane ngaloo nto. Nangona eli yeza linokunikwa abantwana kwiimeko ezithile ezikhethekileyo, kukho izinto ezimbalwa ekufuneka uzazi, kuxhomekeke kwiminyaka yabo. Ugqirha wakho uza kukuchazela konke oku.

Ungenza ntoni ukuba ngempazamo usele amayeza amaninzi kakhulu?

Ukuba oku kuyenzeka, oko kukuthi, ukuba ucinga ukuba usele kakhulu eli yeza, ungalibazisi kwaye utsalele umnxeba kwiziko lolawulo lwetyhefu elikufutshane okanye kwigumbi likaxakeka esibhedlele ngoko nangoko. Okanye uye apho ngoko nangoko. Ukwenza into ngexesha kubaluleke kakhulu.

Eyona nto ilungileyo ekufuneka uyikhumbule kukuba eli yeza lelakho kuphela. Musa ukwabelana ngeyeza lakho nabanye abantu nangasiphi na isizathu, nokuba nabo banesifo esifana nesakho.

Wenza ntoni ukuba uphoswe yintlanganiso yamayeza?

Ewe, kunokwenzeka. Wonke umntu uyalibala ukusela amayeza akhe ngamanye amaxesha. Ukuba uphosa idosi ye-Emicizumab, yithathe kwangoko xa ukhumbula. Nangona kunjalo, ukuba sele kusondele ixesha lomthamo wakho olandelayo xa ukhumbula (umzekelo, ukuba kungaphakathi kweentsuku ezi-3 emva komthamo wakho olandelayo weyeza owuthatha rhoqo emva kweentsuku ezi-7), yeka idosi ephosiweyo kwaye uthathe idosi elandelayo ngexesha eliqhelekileyo. Ungaze uthathe idosi ephindwe kabini, oko kuthetha ukuba kufuneka uthathe zombini idosi ephosiweyo kunye nedosi elandelayo ngexesha elinye. Ukuba awuqinisekanga, buza ugqirha wakho okanye ikhemisti.

Ngaba kukho amanye amayeza anokusebenza nala mayeza?

Ewe, kulungile ukwazi oku. Kukho amayeza athile anokusebenzisana ne-emicizumab xa esetyenziswa kunye. Ngamafutshane, xa la mayeza mabini esetyenziswa kunye, anokuchaphazela ukusebenza kwelinye, okanye anokunyusa iziphumo ebezingalindelekanga.

Ngokukodwa, kufuneka kuqatshelwe xa kusetyenziswa i-emicizumab kunye nezinye iindlela zonyango lwe-hemophilia. Eminye imizekelo yile:

• I-activated prothrombin complex concentrate (aPCC)
• I-Factor VIIa, i-recombinant
• I-Factor VIII (i-factor VIII)

Kukho umngcipheko wemeko enzima ebizwa ngokuba yi-thrombotic microangiopathy (TMA) kunye nokuqhekeka kwegazi xa eli yeza lisetyenziswa kunye ne-emicizumab. Ngoko ke, ukuba ufuna olunye unyango lwexesha lokopha ngequbuliso, kubalulekile ukuxelela ugqirha wakho ukuba uthatha i-emicizumab.

Olu luhlu aluphelelanga. Kungoko ke, kubalulekile ukuxelela ugqirha wakho ngawo onke amayeza owasebenzisayo - kungekuphela nje lawo achazwe ngugqirha wakho, kodwa neevithamini, amayeza emifuno, amayeza okudambisa iintlungu, kunye nezongezo zokutya ozithengayo kwikhemesti. Kwakhona, ukuba utshaya, usela utywala, okanye usebenzisa iziyobisi ezingekho mthethweni, kungcono ukuxelela ugqirha wakho . Ezinye izinto zinokuchaphazela amayeza akho.

Yintoni enye endifanele ndiyiqaphele xa ndisebenzisa eli yeza?

Ngelixa uthatha i-Emicizumab, ugqirha wakho usenokuyalela uvavanyo lwegazi olwahlukeneyo ukuze ajonge impilo yakho. Olu vavanyo lusetyenziselwa ukujonga ukuba amayeza ayasebenza na kwaye kukho naziphi na iingxaki. Ngoko ke, kubalulekile ukuba olu vavanyo lwenziwe rhoqo.

Zithini iziphumo ebezingalindelekanga ezinokubakho zale yeza?

Cinga ngayo, naliphi na iyeza esilisebenzisayo linokubangela iziphumo ebezingalindelekanga ezincinci, akunjalo? Yinto eqhelekileyo leyo. I-Emicizumab nayo inokubangela ezo ziphumo. Kodwa ungakhathazeki, uninzi lwexesha ezi azibalulekanga kangako kwaye ziya kuphela kwiintsuku ezimbalwa. Nangona kunjalo, kukho izinto ekufuneka sizilumkele ngakumbi.

Iziphumo ebezingalindelekanga ekufuneka uzixelele ugqirha wakho okanye umboneleli wezempilo ngoko nangoko ziquka:

Ukuba ufumana ezi mpawu, xelela ugqirha ngokukhawuleza, kuba zinokuba yingozi.

• Iimpendulo ze-allergy: ukurhawuzelela kwesikhumba ngequbuliso, amaqhuqhuva, ukudumba kobuso, imilebe, ulwimi okanye umqala (okunokubangela ubunzima bokuphefumla).
• Iimpawu zokuqhekeka kwegazi: Oku kunokuba yingozi kakhulu. Ngoko ke qaphela ezi mpawu:
• Ubunzima bokuphefumla okanye iintlungu esifubeni.
• Ukwehla ngequbuliso okanye utshintsho kubungakanani bomchamo owudlulayo.
• Utshintsho embonweni (umz. ukubona okufiphele ngesiquphe, ukubona kabini).
• Intloko ebuhlungu kakhulu, ngequbuliso, nebuhlungu kakhulu.
• Intlungu, ukudumba, ukuba bomvu, okanye ukufudumala xa uchukumisa ingalo okanye umlenze (ingakumbi kwindawo yesinqe).
• Intlungu ebuhlungu yesisu.
• Ukuba ndindisholo okanye ubuthathaka bobuso, ingalo, okanye umlenze ngequbuliso (ingakumbi kwelinye icala lomzimba).
• Ubunzima bokuthetha okanye ukuziva ngathi amagama ayavakala.
• Ukutyheli kwamhlophe emehlweni okanye kulusu (i-jaundice).

Ukuba ubona into efana nale, kufuneka ufune ingcebiso kagqirha ngoko nangoko.

Iziphumo ebezingalindelekanga ezingezizo ezinzulu, kodwa ekufuneka zixelwe kugqirha wakho ukuba ziyaqhubeka okanye ziyakukhathaza:

Ezi zifo zihlala ziphela kwiintsuku ezimbalwa, kodwa ukuba ziyaqhubeka okanye zikubangela ukungakhululeki okukhulu, xelela ugqirha wakho .

• Urhudo
• Umkhuhlane kunye nobuthathaka
• Intloko ebuhlungu
• Intlungu yamalungu
• Iintlungu zemisipha, njengezihlunu ezibuhlungu
• Kusenokubakho iintlungu, ukubomvu, ukurhawuzelelwa, okanye ukudumba okuncinci kwindawo apho kufakwe khona inaliti. Oku kudla ngokuphela emva kosuku olunye okanye ezimbini.

Nokuba ayikhankanywanga kolu luhlu, ukuba ubona into entsha okanye engaqhelekanga emva kokusela eli yeza, ungoyiki ukuthetha nogqirha wakho ngalo.

Ndingaligcina njani eli yeza ngokufanelekileyo?

Kubaluleke kakhulu ukugcina amayeza akho ngokufanelekileyo.

• Gcina eli yeza kwindawo apho abantwana abancinci bangenakulichukumisa khona nalapho bangenakulibona khona.
• Ukuba usebenzisa eli yeza ekhaya, uza kufumana imiyalelo ecacileyo yendlela yokuligcina (umz., efrijini okanye kubushushu begumbi). Landela loo miyalelo ngononophelo.
• Musa ukusebenzisa naliphi na iyeza eliphelelwe lixesha elibhalwe kwibhotile okanye ebhokisini. Buza ingcali yezemithi ukuba ungalilahla njani ngokufanelekileyo.

Okokugqibela, amanqaku ambalwa abalulekileyo (Umyalezo Wokuya Ekhaya)

Kulungile, ngoko ke ngokwezinto esizithethileyo, ndiyathemba ukuba uyiqonda kakuhle inaliti ye-Emicizumab. Nazi izinto ezibalulekileyo ekufuneka uzikhumbule:

• I-Emicizumab liyeza elibalulekileyo nelisebenzayo elinokukunceda ukulawula ukopha kwakho ukuba une-hemophilia A.
• Kubalulekile ukusela eli yeza ngexesha elifanelekileyo nangedosi efanelekileyo, njengoko ugqirha esitsho.
• Ukuba unemibuzo okanye iinkxalabo malunga nale yeza, indlela yokulisebenzisa, iziphumo ebezingalindelekanga, okanye nantoni na enye, ungoyiki okanye ube neentloni ukubuza ugqirha wakho, umongikazi, ikhemisti, okanye omnye umboneleli wezempilo. Bakho ukuze bakuncede.
• Hlala uqaphela iziphumo ebezingalindelekanga.Ukuba ufumana naziphi na iziphumo ebezingalindelekanga ezinzulu esizixubushileyo, funa ingcebiso kugqirha ngokukhawuleza.
• Qiniseka ukuba ulahla iinaliti kunye neesirinji ezisetyenzisiweyo ngokukhuselekileyo kwisikhongozeli esibukhali.
• Musa ukwabelana ngamayeza akho nabanye abantu.

Khumbula, eli nqaku likunike ulwazi olusisiseko kuphela. Wonke umntu wahlukile, ngoko ke ngugqirha wakho kuphela owaziyo ukuba yintoni ekulungeleyo imeko yakho. Ngoko ke, soloko uthetha naye kwaye ulandele icebiso lakhe. Ndikunqwenelela impilo entle!

I- Emicizumab, iHemlibra, iHemophilia A, iHemophilia A, ukopha, inaliti, iziphumo ebezingalindelekanga, isikhongozeli se-subcutaneous, esibukhali