Iyo ugize igikomere gito, kuva amaraso kurahagarara nyuma y'igihe runaka, si byo se? Ibyo biterwa n'uburyo butangaje bwo kwirinda mu mubiri wacu. Ariko kuri bamwe, iyi nzira yo kuvura amaraso ntibaho neza. Ndetse n'igikomere gito gishobora gutera kuva amaraso mu buryo buhoraho. Uyu munsi turavuga ku ndwara yo mu maraso itera kuvura amaraso nabi.
Namenya nte ko mfite hemophilia?
Mu magambo make, iyo imibiri yacu itangiye kuva amaraso, uruhererekane rw'ibinyabutabire rutangira kubihagarika. Ingaruka zabyo ni ukurema amaraso apfunditse (Fibrin clot). Poroteyine nyinshi zidasanzwe mu maraso yacu zifasha mu gukora ayo maraso apfunditse. Ibyo tubyita "ibintu bipfunditse" cyangwa "ibintu bipfunditse ".
Hemophilia ni indwara iterwa n'umurage aho kimwe mu bintu bituma amaraso agwa, cyane cyane Factor VIII cyangwa Factor IX, kibura cyangwa kikagabanuka mu bwinshi. Ibi bivuze ko amaraso adagwa mu buryo busanzwe.
Iyo umuganga akeka ko ufite hemophilia, azagupima amaraso menshi kugira ngo arebe uko amaraso yawe yacitse. Ibi bizamini birimo:
- Icyitegererezo cy'amaraso yawe gifatwa, kikavangwa n'imiti idasanzwe muri laboratwari, hanyuma kigapimwa kugira ngo harebwe niba amaraso yacitse, kandi niba ari uko bimeze, uburyo yacitse vuba.
- Niba ibi bizamini bidasanzwe, uzaba ufite ibipimo byihariye by'amaraso kugira ngo upime urugero rwa Factor VIII na Factor IX mu maraso yawe.
Ibi bizamini bizafasha muganga wawe kumenya neza ubwoko bwa hemophilia ufite (A cyangwa B) n'uburemere bwayo.
Ni ubuhe buryo bwo kuvura hemophilia?
Hari uburyo butandukanye bwo kuvura hemophilia. Ubwoko bw'ubuvuzi ukeneye buzaterwa n'ubwoko bwa hemophilia ufite n'uburemere bwayo.
Urugero, niba ufite hemophilia yoroheje, ushobora gukenera kuvurwa gusa iyo ufite imvune cyangwa iyo witegura kubagwa. Ariko, niba ufite hemophilia ikomeye kandi uva amaraso kenshi, ushobora gukenera kuvurwa buri gihe kugira ngo wirinde kuva amaraso no kurinda ingingo zawe ubusembwa n'ubumuga.
Uburyo bw'ingenzi bwo kuvura ni ubu bukurikira:
| Uburyo bwo kuvura | Ibisobanuro byoroshye |
|---|---|
| Gutanga ibintu bituma amaraso agwa (Factor Replacement Therapy) | Gutanga ikintu kidakora cyangwa gitera amaraso kugabanuka (Factor VIII cyangwa IX) binyuze mu mitsi (ishyirwa mu mitsi) ni bwo buryo bw'ingenzi bwo kuvura. |
| Ubundi bwoko bw'imiti | Gutanga indi miti ifasha mu kugenzura kuva amaraso, haba mu gihe amaraso agwa cyangwa atagwa. |
| Kuvura ingingo ziva amaraso n'ibindi bibazo | Kugenzura kwangirika kw'ingingo guterwa no kuva amaraso kenshi, ubuvuzi bw'umubiri, no guhindura imibereho. |
Reka turebere hamwe imiti yihariye ikoreshwa.
Abantu barwaye hemophilia A bahabwa factor VIII, naho abantu barwaye hemophilia B bahabwa factor IX. Ibi bintu bikorwa mu buryo bubiri bw'ingenzi:
1. Amaraso atangwa n'abantu
2. ADN ikomoka kuri sintetike/Recombinant
Ubwoko bushya bw'ibintu ubu bwagenewe kuguma mu mubiri igihe kirekire, bivuze ko hakenewe inshinge nkeya ugereranyije na mbere.
| Izina ry'umuti | Imikoreshereze n'imikorere |
|---|---|
| Emicizumab-kxwh (HEMLIBRA) | Umuti utangwa mu rwego rwo gukumira cyangwa kugabanya kuva amaraso ku bantu bafite hemophilia A. Ukora mu gusimbuza factor VIII ibura mu buryo butandukanye. Utangwa nk'urushinge rwo munsi y'umubiri rimwe mu cyumweru. |
| Desmopressin (DDAVP) | Umuti uhabwa abantu bafite hemophilia yoroheje A. Wongera by'agateganyo urugero rwa factor VIII mu maraso. Ushobora gutangwa mu mitsi, uterwa inshinge, cyangwa ugashyirwa mu mazuru. |
| Imiti igabanya ubukana bwa fibrinolytic (urugero: aside Tranexamic) | Iyi ni imiti ishobora gufatwa nk'ibinini. Ikora mu kubuza amaraso gushonga vuba cyane. Hari ubwo ikoreshwa hamwe na factor therapy. |
| Obizur | Iyi ni ubwoko bwa factor VIII iboneka mu ngurube. Ntabwo ikoreshwa mu kuvura hemophilia y’uruhererekane, ahubwo ikoreshwa mu kuvura indwara idakunze kugaragara, itangira nyuma yitwa Acquired Haemophilia A. Iyi ndwara ishobora guterwa no gutwita, kanseri, cyangwa imiti imwe n'imwe. |
Ibindi bibazo n'imicungire
Tugomba kandi kwita ku bindi bibazo byinshi bizanwa no kubura amaraso.
Ingingo zirimo kuva amaraso
Iyi ni yo ngorane ikomeye cyane ya hemophilia. Iyo kuva amaraso ku ngingo nko mu ivi, mu nkokora, cyangwa mu kaguru, ni ngombwa guhita ubona uburyo bwo kuvurwa n'ibintu. Iyo ibi bitakozwe, ingingo ishobora kwangirika burundu, bigatera ububabare, kubyimba, no kugorwa no kugenda uko igihe kigenda. Iyo kuva amaraso bibayeho, ruhuka kandi ushyiremo urubura nk'uko muganga yabigutegetse. Nyuma y'uko ububabare n'ibibyimba bishize, physiotherapy ni ingenzi cyane kugira ngo wongere kugira imbaraga n'imikorere mu ngingo.
Ibikorwa by'umubiri
Kugira hemophilia ntibivuze ko ugomba kuguma mu rugo igihe cyose. Ariko, ni byiza kwirinda siporo zishobora gutera imvune. Urugero, siporo nka rugby na boxe ntizikwiriye. Ariko, imyitozo nko koga, kugenda n'amaguru, no kugendera ku igare (mu buryo bwizewe) ni myiza cyane ku mubiri. Ni byiza kuganira na muganga wawe ku myitozo ikubereye n'iyo udakwiye gukora.
Ni izihe ngorane zishobora kubaho mu gihe cyo kuvurwa?
Nubwo uburyo bwo kuvura ubu bufite umutekano, hari ingorane ebyiri ugomba kumenya.
1. Indwara ziterwa n'amaraso: Mu myaka ya za 1970 na 1980, hari ibyago byinshi byo kwanduzanya virusi nka VIH na hepatite binyuze mu kuvura hakoreshejwe amaraso. Ariko ubu nta mpamvu yo guhangayikishwa na byo.Muri iki gihe, abatanga amaraso bapimwa cyane. Amaraso yose apimwa virusi hanyuma agahabwa uburyo bwihariye bwo kuyahagarika mbere yo kuyakoresha mu buvuzi. Bityo rero ibyago ni bike cyane. Ariko, nk'umuntu urwaye hemophilia, ni ngombwa cyane gukingirwa hepatite A na B.
2. Impinduka mu mikorere y'ubudahangarwa bw'umubiri (Inhibitors): Hari igihe, ubudahangarwa bw'umubiri wacu bufata poroteyine dutanga iturutse hanze nk' 'umwanzi' maze bugatangira kuyirwanya. Ibi tubyita ikorwa ry'imikoreshereze y ...
Ubutumwa bwo kujyana mu rugo
- Hemophilia ni indwara yo kuvura amaraso mu buryo bw’umubiri. Ubwoko bubiri bw’ingenzi ni hemophilia A (Factor VIII deficiency) na hemophilia B (Factor IX deficiency).
- Iyi ndwara ipimwa hakoreshejwe uburyo bwihariye bwo gupima amaraso.
- Uburyo bw'ingenzi bwo kuvura ni uguha umubiri ikintu gituma amaraso agwa cyangwa akagabanuka mu mitsi.
- Uburyo bwo kuvura bukoreshwa muri iki gihe ni bwiza cyane kandi bufite akamaro. Ingaruka zo mu bihe byashize zarashize cyane.
- Iyo habayeho kuva amaraso mu ngingo, ni ngombwa kwihutira gushaka abaganga. Ibi bishobora gufasha gukumira kwangirika burundu kw'ingingo.
- Buri gihe ganira na muganga wawe ku mibereho yawe n'uburyo bwo gukora siporo bukubereye. Ni ngombwa cyane gukurikiza inama za muganga wawe.
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