Ngaba wakha weva ngemeko ebizwa ngokuba yi-hemophilia ? Le yimeko engaqhelekanga kodwa imbi kakhulu. Ngamafutshane, yimeko apho igazi lingajiki kakuhle emizimbeni yethu. Oku kuthetha ukuba nokuba kwenzakele kancinci, ukuwa, okanye ukunqunyulwa ngamanye amaxesha kunokubangela ukopha okukhulu. Ngamanye amaxesha, ukopha okuzenzekelayo kunokwenzeka ngaphandle kwesizathu esicacileyo.
Yintoni kanye kanye i-hemophilia?
Khawuthelekelele ukuba xa sisopha igazi, imizimba yethu ineqela elincinci labasebenzi elisebenza ukulimisa. Sibabiza ngokuba 'zizinto' zabasebenzi. Ezi ziintlobo ezikhethekileyo zeeproteni. Ezi zinto ziyadibana ukuze zenze ihlwili legazi kwaye ziyeke ukopha igazi.
Kukho iintlobo ezimbini eziphambili ze-hemophilia:
- I-Hemophilia A: Aba bantu abanayo iproteni eyaneleyo ebizwa ngokuba yi-factor VIII , efunekayo ekuqiniseni ukujiya kwegazi.
- I-Hemophilia B : Aba bantu abanayo iproteni ebizwa ngokuba yi-factor IX .
Oku kudla ngokuphathwa ngugqirha wakho xa ekunika i-deficiency factor ngemithambo. Unyango lokuthintela ukopha lubizwa ngokuba yi-"prophylaxis," kwaye unyango xa ukopha lubizwa ngokuba yi-"on-demand".
Kodwa, kukho ingxaki encinci apha...
Kwabanye abaguli, umzimba uqala ukusebenza ngokuchasene nezi zinto sizinikayo ngokugonya. Ngokungathi ucinga ukuba zilutshaba uze uzihlasele. Oku sikubiza ngokuba kukwenziwa "kwezithinteli" . Xa oku kusenzeka, amandla onyango lwezinto esizinikayo ayancitshiswa. Ngoko ke, ukunyanga abantu abanezi ntlobo 'zezithinteli' kunzima ngakumbi.
Kwenzeka ntoni ngale chiza litsha elibizwa ngokuba yi-Alhemo?
I-Alhemo(concizumab-mtci) liyeza elitsha elivunyiweyo ukunciphisa okanye ukuthintela ukopha, ingakumbi kwizigulane ezine-hemophilia A okanye i-hemophilia B ezine-'inhibitors' ezikhankanyiweyo ngaphambili.
Ngamafutshane, imizimba yethu ngokwendalo ineproteni ethintela igazi ekujiyeni. Ibizwa ngokuba yiTFPI (Tissue Factor Pathway Inhibitor) . Cinga ngayo njenge-'traffic cop' emizimbeni yethu; ilawula inkqubo yokujiya kwegazi. Into eyenziwa yi-Alhemo kukuphazamisa kancinci umsebenzi wale 'cop' ebizwa ngokuba yiTFPI. Emva koko, umzimba wonyusa ukuveliswa kwenye into enceda ukujiya kwegazi (i-factor Xa), kwaye amandla okwenza amajini egazi ayaphucuka. Oku kunciphisa kakhulu umngcipheko wokopha.
Ungayisebenzisa njani i-Alhemo?
I-Alhemo yinaliti efakwa phantsi kwesikhumba imihla ngemihla. Iza kwipeni ezaliswe kwangaphambili, ngoko ke kulula kakhulu ukuyisebenzisa. Ukuba ugqirha wakho ugqiba kwelokuba ungazinika le naliti ekhaya, uza kukubonisa ngqo indlela yokuyenza.
- Idosi: Idosi ephezulu kancinci (idosi yokulayisha) inikwa ngosuku lokuqala lonyango. Emva koko, kufuneka uthathe idosi yolondolozo emiselweyo imihla ngemihla. Idosi imiselwa ngokusekwe kubunzima bakho, ngoko ke kufuneka uxelele ugqirha wakho ukuba ubunzima bakho buyatshintsha.
- Uvavanyo: Kwiiveki ezine emva kokuqala unyango, uza kuhlolwa igazi ukujonga ukuba ubungakanani beyeza emzimbeni wakho buchanekile na. Ngokusekelwe kwiziphumo, ugqirha wakho unokulungisa umthamo wakho.
- Iindawo zokugonya: Isitofu sinikwa esiswini (ii-intshi ezi-2 ezijikeleze inkaba) okanye ethangeni. Musa ukugonya kwindawo enye yonke imihla, kodwa tshintsha indawo. Musa ukugonya kwiindawo ezibuhlungu, ezikruqukileyo, ezibomvu, ezine-eczema, okanye ezinezikrweqe .
Eyona nto ibalulekileyo kukuba, ungayeki ukuthatha eli yeza ngaphandle kokuthetha nogqirha wakho. Ukuze uthintele ukopha, kubaluleke kakhulu ukulithatha ngexesha elifanelekileyo yonke imihla.
| Ukuba phakathi kweeveki ezi-4 zokuqala | Fowunela ugqirha wakho ngoko nangoko uze ufumane ingcebiso. |
| Ukuba uphoswa yidosi emva kokuqala idosi yokugcina | Yithathe ngokukhawuleza xa ukhumbula. Yithathe ngexesha lakho eliqhelekileyo ngosuku olulandelayo. |
| Ukuba uphoswa yimithandazo emibini ukuya kwemithandathu (2-6) | Wakuba ukhumbule, thabatha izidlo ezibini ngexesha elinye. Ukususela ngosuku olulandelayo, thabatha isidlo esinye njengesiqhelo. |
| Ukuba imithandazo esixhenxe (7) okanye ngaphezulu ayiphendulwanga | Fowunela ugqirha wakho ngoko nangoko. Kuya kufuneka uphinde uthathe 'idosi yokulayisha' entsha. |
Zithini iziphumo ebezingalindelekanga? Ungajongana njani nazo?
Njengayo nayiphi na iyeza, i-Alhemo inokuba nemiphumo emibi.
Iziphumo ebezingalindelekanga eziqhelekileyo
Ngenxa yokuba olu lugonyo, kusenokubakho iimpembelelo ezincinci kwindawo yokufakwa kwenaliti . Umzekelo:
- Ukugruzuka, ukuba bomvu, ukurhawuzelelwa, okanye ukopha kancinci kwindawo efakwe kuyo inaliti.
- Ukuze uncede kule nto, ungabeka i-compress epholileyo kuloo ndawo.
- Oku kungancitshiswa nangokutshintsha indawo yokutofa yonke imihla.
- Musa ukuthatha nayiphi na imithi yokuthomalalisa iintlungu okanye eminye imithi ngaphandle kokubonisana nogqirha wakho.
Iziphumo ebezingalindelekanga ezinzulu - lumka kakhulu ngale nto!
Nangona kunjalo, kukho into enye ebaluleke kakhulu ekufuneka uyiqaphele: kukho umngcipheko ongaqhelekanga wokwenzeka kwamahlwili egazi (thrombosis) kwimithambo yegazi .
Ezi zandla, imilenze, imiphunga, intliziyo enegazi eliqhekekileyoOkanye ingenzeka emithanjeni kwiindawo ezifana nobuchopho. Ukuba ulungiselela naluphi na utyando, kufuneka uxelele ugqirha wakho ngalo.
Ukuba ufumana naziphi na kwezi mpawu zilandelayo, funa ingcebiso kagqirha ngokukhawuleza ngaphandle kokulibazisa:
- Ukubetha kwentliziyo
- Intlungu yesifuba okanye ukuxinana
- Ubunzima bokuphefumla
- Ubunzima bokuthetha, utshintsho embonweni
- Intlungu okanye ukudumba emilenzeni
Ukuba ufumana naziphi na kwezi mpawu, qhagamshelana nogqirha wakho ngoko nangoko, okanye uye kwigumbi likaxakeka lesibhedlele elikufutshane (ETU). Oku kubaluleke kakhulu.
Ufumana njani iyeza elikhethekileyo elinje?
I-Alhemo ayiloyeza onokulithenga kwikhemesti eqhelekileyo. La luhlobo 'lwamayeza akhethekileyo'. Kukho inkqubo ekhethekileyo yokufumana la mayeza.
Emva kokuba ugqirha wakho ekunike amayeza, uza kuqhagamshelana nekhemesti ekhethekileyo. Ngabo abaza kukunika iinkcukacha zendlela yokuthumela amayeza ekhayeni lakho. Kusenokufuneka ufumane imvume kwangaphambili kwinkampani yakho yeinshorensi. Ummeli wenkampani eyenza amayeza unokukwazi ukunceda kule nkqubo. Ugqirha wakho uza kukukhokela kuyo yonke le nto.
Umyalezo Wokuya Ekhaya
- I-Hemophilia yingxaki yokunqongophala kwegazi.
- I-Alhemo yinaliti enikwa imihla ngemihla ukulawula ukopha, ingakumbi kwizigulana eziye zavelisa 'ii-inhibitors' zokufaka izinto emzimbeni.
- Ungaze uyeke ukuthatha eli yeza ngaphandle kwengcebiso kagqirha wakho. Soloko uthatha idosi emiselweyo.
- Lumka ngengozi enkulu yokuqhekeka kwegazi. Ukuba ufumana iimpawu ezifana nentlungu esifubeni okanye ubunzima bokuphefumla, yiya kugqirha okanye kwi-ETU ngokukhawuleza.
- Ekubeni eli liyeza elikhethekileyo, thetha nogqirha wakho malunga nenkqubo yokulifumana kwaye uqiniseke ukuba uyaliqonda kakuhle.
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