Wake wazizwa sengathi wena noma othile emndenini wakho wopha igazi ngendlela engalawuleki uma usika kancane? Noma uthola amabala amakhulu aluhlaza okwesibhakabhaka emzimbeni wakho ngisho nangemva kokulimala okuncane? Ungazinaki lezi zinto njengezijwayelekile. Ngoba, lokhu kungaba uphawu lwesimo esibizwa ngokuthi i-hemophilia . Ungakhathazeki, sizoxoxa ngakho konke ngamazwi alula namuhla.
Kalula nje, iyini i-hemophilia?
I-Hemophilia yisimo sofuzo esithinta indlela amahlule egazi ethu akhula ngayo. Ngokuvamile, lapho silimala, ukuphuma kwegazi kuyayeka ngemva kwesikhashana. Lokhu kungenxa yokuthi amaprotheni akhethekile egazini lethu (abizwa ngokuthi izinto ezibangela ukujiya kwegazi ) asebenza ndawonye ukwakha amahlule egazi. Kodwa-ke, abantu abane-hemophilia abanalo elinye lala maprotheni asiza amahlule egazi. Yingakho ukuphuma kwegazi kungayeki kalula uma silimala.
Lesi akusona isifo esithelelanayo. Yisimo sofuzo, okusho ukuthi sidluliselwa ezizukulwaneni ngezizukulwane .
Kunezinhlobo ezimbili eziyinhloko ze-hemophilia.
| Uhlobo lwe-hemophilia | Incazelo |
|---|---|
| I-Hemophilia A | Lolu uhlobo oluvame kakhulu. Cishe ama-80% eziguli ezine-hemophilia analolu hlobo. Lubangelwa ukuntuleka kweprotheni i-Factor VIII, edingekayo ukuze igazi lijiye. Ubukhulu besifo buxhomeke ezingeni lapho lesi sici sincishiswa khona. |
| I-Hemophilia B | Lokhu kuyinto engavamile kancane. Cishe ama-20% eziguli angolu hlobo. Lokhu kubangelwa ukuntuleka kwe-Factor IX, edingekayo ukuze igazi lijiye.Lokhu kungaba mnene, kube maphakathi, noma kube nzima kuye ngokuthi zingakanani izici. |
Ngaphezu kwalokho, kukhona uhlobo olungavamile kakhulu olubizwa ngokuthi i-hemophilia C. Lubangelwa ukuntuleka kwe-Factor XI.
Ziyini izimpawu ze-hemophilia?
Izimpawu ziyahlukahluka kuye ngokuthi isimo sibucayi kangakanani. Ngezinye izikhathi ukopha kungenzeka ngaphandle kwesizathu esicacile. Lezi zimpawu zingabonakala kalula, ikakhulukazi ezinganeni ezincane .
Izimpawu ezibonakala ezinganeni ezincane nasezinsaneni:
- Ukopha ekhanda ngesikhathi sokuzalwa: Ezinye izingane zingase zibe nokopha ngaphakathi ekhanda ngesikhathi sokuzalwa.
- Ukuvuvukala kwamalunga lapho uqala ukuhamba: Kufanele ukhathazeke uma amalunga engane yakho, njengamadolo nezindololwane, evuvukele futhi eluhlaza okwesibhakabhaka ngokushesha nje lapho eqala ukuhamba noma ukukhasa.
- Amabala amakhulu aluhlaza okwesibhakabhaka ngisho noma ephuma ekulimaleni okuncane: Ngisho neqhubu elincane lingabangela ukuthi kuvele amabala amakhulu aluhlaza okwesibhakabhaka emzimbeni.
- Ukopha kaningi ekhaleni nokopha kwezinsini: Ukopha kaningi ezinsinini ngesikhathi sokuvula amazinyo noma lapho uxubha amazinyo.
- Igazi emchameni noma esitulweni.
Umuntu one-hemophilia encane angase angakhombisi zimpawu aze abe mdala. Lesi simo ngezinye izikhathi sitholakala lapho kunokopha ngokweqile ngesikhathi senqubo encane, njengokukhishwa kwezinyo.
Lesi sifo sivela kanjani?
Lokhu kungase kubonakale kuyinkimbinkimbi kancane, kodwa kulula ukukuqonda. I-Hemophilia yisifo esibangelwa izakhi zofuzo . Lokhu kusho ukuthi sibangelwa ukukhubazeka kwezakhi zofuzo ezivela kumama noma kubaba.
- Kusukela kumama kuya endodaneni: I-gene enesici ebangela i-hemophilia ikwi-chromosome X. Ingane yesilisa (indodana) ithola i-chromosome X kumama kanye ne-chromosome Y kuyise. Ngakho-ke uma umama engumthwali walesi sifo, okusho ukuthi unalesi sici kwenye yama-chromosome akhe e-X, kunethuba elingu-50% lokuthi indodana yakhe izothola i-chromosome X enesici kuye. Uma lokho kwenzeka, indodana izoba ne-hemophilia.
- Abesifazane (amadodakazi) baba ngabathwali: Ingane yesifazane ithola ama-chromosome amabili e-X (elinye livela kunina, elinye livela kuyise). Ngisho noma ithola i-chromosome ye-X enephutha kunina, ngokuvamile ayibangeki lesi sifo ngenxa ye-chromosome ye-X enempilo evela kuyise. Kodwa-ke, iba ngabathwali besifo . Lokhu kusho ukuthi ingadlulisela lesi sifo ezinganeni zayo.
- Uma ubaba ene-hemophilia: Ubaba one-hemophilia akasoze adlulisela lesi sifo emadodaneni akhe ngoba amadodana athola i-chromosome Y kuphela kuyise. Kodwa-ke, njengoba wonke amadodakazi akhe ethola i-chromosome X enesici kuye, wonke lawo madodakazi azoba ngabathwali balesi sifo.
Ngezinye izikhathi, ingane ingahlakulela lesi sifo ngokuguquka okuzenzakalelayo, noma ngabe akekho emndenini one-hemophilia.
Ungasithola kanjani lesi sifo? (Ukuxilongwa)
Lesi simo sivame ukutholakala ngokushesha ngemva kokuzalwa. Singatholakala ngokubheka umlando womndeni, noma uma ingane inokopha okungavamile. Singahlolwa nangokuthatha isampula yegazi entanyeni ngemva kokuzalwa kwengane.
Uma wena noma ingane yakho ninalezi zimpawu, bonana nodokotela ngokushesha. Udokotela uzoqala ngokubuza ukuthi kukhona yini emndenini wakho onalesi simo. Bese bezokwenza ukuhlolwa kwegazi.
- Ukuhlolwa kokujiya kwegazi: Lokhu kuhlola ukuthi igazi lakho lijiya ngokushesha kangakanani nokuthi lijiya kahle kangakanani.
- Ukuhlolwa Kwezinto Ezibalulekile: Uma kutholakala inkinga, lokhu kuhlolwa kunganquma ukuthi yiluphi uhlobo lwe-hemophilia onalo (A noma B) nokuthi lubi kangakanani.
| Ubunzima besifo | Amazinga e-Clotting Factor uma kuqhathaniswa namazinga ajwayelekile |
|---|---|
| Okuncane | 5% kuya ku-40% |
| Okumaphakathi | 1% kuya ku-5% |
| Okubi kakhulu | Ngaphansi kuka-1% |
Yiziphi izindlela zokwelapha?
Akukho okufanele ukwesabe, kunezindlela zokwelapha eziphumelela kakhulu ze-hemophilia namuhla. Umgomo oyinhloko ukubuyisela i-blood clotting factor entulekayo emzimbeni.
- Ukufakwa Kwesici Sokugoqa: Lokhu kuyindlela yokwelapha eyinhloko. I-Factor VIII inikezwa ngemithambo yegazi ye-hemophilia A kanti i-Factor IX inikezwa ngemithambo yegazi ye-hemophilia B. Lokhu kungenziwa esibhedlela, noma ungaqeqeshwa ukukwenza ekhaya.
- Ukwelashwa ngama-hormone:I-Desmopressin umuthi onikezwa ukwelapha i-hemophilia A encane. Isebenza ngokuvuselela umzimba ukuthi ukhulule i-Factor VIII. Itholakala njengomjovo noma njengesifutho sekhala.
- Ama-Anticoagulant: Le mithi isebenza ngokuvimbela ihlule legazi ukuthi lincibilike ngokushesha kakhulu. Isetshenziswa ezimweni ezifana nokukhishwa kwamazinyo.
- Ukwelashwa Ngomzimba: Ukopha njalo emalungeni kungabangela ukuthi alahlekelwe ukuhamba kwawo. Ukwelashwa ngomzimba kungasiza ekubuyiseleni ukusebenza kwalawo malungeni.
Izinkinga ezingase zivele ngenxa ye-hemophilia
Uma ukwelashwa okufanele kungatholakali, kungase kube nezinkinga ezithile, ikakhulukazi ezimweni ezimbi kakhulu ze-hemophilia.
- Ukulimala kwamalunga: Ukopha njalo emalungeni afana namadolo, izindololwane, nasemaqakaleni kungabangela ukuthi akhubazeke unomphela, abe buhlungu, futhi kube nzima ukuwanyakazisa.
- Ukopha igazi ebuchosheni: Lena yinkinga eyingozi kakhulu. Ukopha igazi ebuchosheni kungenzeka ngenxa yokulimala ekhanda noma, kwezinye izimo ezinzima, ngaphandle kwesizathu esibonakalayo. Lokhu kungabangela ukukhubazeka okungapheli noma ngisho nokufa. Uma ulimele kakhulu ekhanda, iya eMnyangweni Wezimo Eziphuthumayo (ETU) wesibhedlela ngokushesha.
- Ubunzima bokuphefumula: Uma kukhona ukopha endaweni yomphimbo, ukuvuvukala kungabangela ubunzima bokuphefumula.
Eziningi zalezi zinkinga zingavinjelwa ngokwelashwa okufanele nangesikhathi. Ngakho-ke, kubaluleke kakhulu ukulandela imiyalelo kadokotela wakho ngqo.
Uma uhlela ukuba nomntwana futhi unomlando womndeni we-hemophilia, ungathola ukwelulekwa ngofuzo. Lokhu kungakusiza ukuthola ukuthi ungumthwali wesifo nokuthi ingozi yakho ingakuphi enganeni yakho. Kungenzeka futhi ukukhetha umbungu onempilo bese uwufaka esibelethweni sakho ngezindlela ezifana nokukhulelwa kwe-in-vitro.
Umlayezo Wokuya Nawe Ekhaya
- I-Hemophilia yisifo esibangelwa izakhi zofuzo esithinta inqubo yokujiya kwegazi futhi sidluliselwa ezizukulwaneni ngezizukulwane. Akusona isifo esithelelanayo.
- Uma uhlangabezana nezimpawu ezifana nokopha ngokweqile ngenxa yokulimala okuncane, ukuklwebheka njalo, noma ukuvuvukala kwamalunga , funa iseluleko sezokwelapha ngokushesha .
- Namuhla, kunezindlela zokwelapha eziphumelela kakhulu zalesi sifo. Ngokwelashwa okufanele, ungaphila impilo evamile.
- Uma ushayeka kakhulu ekhanda, kubalulekile ukuya e -Emergency Treatment Unit (ETU) esibhedlela ngokushesha.
- Uma kunomlando we-hemophilia emndenini wakho, kuwukuhlakanipha ukufuna iseluleko sezakhi zofuzo ngaphambi kokuhlela ukuba nezingane.
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