Ese wowe cyangwa umwana wawe mugira ikibazo cyo kuva amaraso no mu gasebe gato? Reka tuvuge kuri Hemophilia A

Iyo ufite igikomere gito ku mubiri wawe, cyangwa iyo ukuwe iryinyo, ese kuva amaraso bikomeza kudahagarara? Cyangwa hari igihe ugira ibisebe by'ubururu ku mubiri wawe nta kintu na kimwe kigukubise? Ese ubona ibisebe ku mubiri wawe wose, cyane cyane iyo umwana wawe atangiye kwandagira cyangwa kugenda? Ibintu nk'ibi bibaye, impamvu ishobora kuba indwara yitwa hemophilia . Ntugatinye iyo wumvise iri zina. Uramutse uvuwe neza , ushobora kubaho ubuzima busanzwe kandi bwuzuye. Reka tubiganireho neza kandi byoroshye uyu munsi.

Mu magambo make, Hemophilia A ni iki?

Mu magambo make, Hemophilia A ni indwara ituma amaraso yacu adafunga neza. Ubusanzwe, iyo tugize ikibazo, amaraso yacu arafunga kugira ngo ahagarike kuva amaraso. Ibi bifashwa na poroteyine zidasanzwe mu maraso yacu. Ibyo tubyita "ibintu bifunga amaraso."

Umuntu urwaye hemophilia A ntakora bihagije bya factor VIII yo kuvura amaraso. Ubukana bw'indwara buterwa n'urugero iyi poroteyine ya Factor VIII igabanutseho. Bityo, igabanyijemo ibice bitatu:

• Hemophilia yoroheje: Urugero rwa Factor VIII ruraboneka ku rugero runaka.
• Hemophilia iringaniye: Igipimo cya Factor VIII kiri hasi cyane.
• Hemophilia ikomeye: Igipimo cya Factor VIII kiba kiri hasi cyane cyangwa ntaho kiri.

Akenshi, iyi ni indwara iterwa n’uturemangingo igaragara mu miryango. Ariko, hafi kimwe cya gatatu cy’abarwayi, umuntu mushya ashobora kuyirwara nta muntu n’umwe wo mu muryango uyirwaye.

Ni iki gitera hemophilia?

Iki ni ikintu dukura binyuze mu turemangingo. Tekereza nawe, buri kintu cyose kiranga umubiri wacu kigenwa na za jeni. Umugore afite chromosome ebyiri za X (XX), mu gihe umugabo afite chromosome imwe ya X na chromosome imwe ya Y (XY).

Ikosa rya gene rijyanye na hemophilia riri kuri chromosome ya X.

Rero, niba umubyeyi ari "umutwazi" w'iyi gene ifite inenge, ubusanzwe ntagaragaza ibimenyetso. Kubera ko indi chromosome ye ya X nzima ikora poroteyine ya VIII ikenewe. Ariko niba umuhungu we yarazwe iyi chromosome ya X ifite inenge, uwo mwana azarwara hemophilia. Kubera ko umuhungu afite chromosome imwe ya X gusa, uwo muhungu azarwara hemophilia. Kubera iyo mpamvu, hemophilia ikunze kugaragara mu bahungu kurusha abakobwa.

Ni ibihe bimenyetso by'indwara yo kubura amaraso mu mubiri (hemophilia)?

Ibimenyetso biterwa nuko indwara yawe ari nto, iri hagati, cyangwa ikomeye.

Ibimenyetso by'umuburo byerekana ko umuntu yavuye amaraso mu bwonko

Iyo umuntu ufite indwara yo kubura amaraso cyane akubiswe n'umutwe, kuva amaraso mu bwonko bishobora kubaho. Iki ni ikibazo gikomeye. Niba ufite imvune mu mutwe kandi ufite kimwe mu bimenyetso bikurikira, hamagara muganga wawe ako kanya cyangwa ujye mu kigo cyita ku bibazo byihutirwa (ETU) kiri hafi yawe.

• Kuribwa umutwe cyane bihoraho
• Kuruka
• Gusinzira kenshi cyangwa umunaniro ukabije
• Gucika intege cyangwa kugorwa no kugenda
• Kureba kabiri
• Indwara zo mu mutwe

Ni gute wasuzuma indwara?

Niba hari umuntu wo mu muryango wawe ufite ikibazo cyo kubura amaraso mu nda, ushobora gupimisha umwana wawe iyo utwite. Ariko, hari ingaruka zimwe na zimwe zishobora guterwa n’ibi bizamini, bityo ugomba kubiganiraho na muganga wawe.

Indwara ikomeye ya hemophilia mu bana bato ikunze kugaragara mu mwaka wa mbere w'ubuzima. Niba umwana wawe atangiye kuzunguruka agatangira kwandagira agatangira kubona ibikomere ku mubiri we, ganira na muganga wawe kuri ibyo.

Muganga ashobora kukubaza ibibazo nk'ibi:

• Ibi bikomere n'amaraso byaje gute?
• Kuva amaraso bimaze igihe kingana iki?
• Ese hari imiti abana bagomba gufata?
• Hari umuntu wo mu muryango wawe ufite ibibazo byo kuvura amaraso?

Hanyuma, hazaba hakozwe ibizamini byinshi by'amaraso kugira ngo hemezwe ko indwara yanduye. Ushobora kandi koherezwa kwa muganga w'indwara z'amaraso.

Ivurwa ite?

Uburyo bwo kuvura buterwa n'uburemere bw'indwara, imyaka yawe, n'ibyo ukeneye ku giti cyawe. Intego nyamukuru y'ubuvuzi ni ugusimbuza poroteyine ya VIII ibura mu mubiri. Ibi byitwa uburyo bwo kuvura indwara . Nubwo ibi bidakiza indwara burundu, bishobora gufasha mu kugenzura kuva amaraso no kubaho ubuzima busanzwe.

Hari ubwoko bubiri bw'ubuvuzi:

• Uburyo bwo kuvura indwara: Gutera inshinge za factor VIII buri gihe ku gihe cyagenwe kugira ngo hirindwe kuva amaraso, aho gutegereza ko kuva amaraso bibaho. Ibi ni ingenzi cyane cyane ku bantu bafite hemophilia ikomeye.
• Ubuvuzi bukenewe: Guhabwa ubuvuzi gusa iyo habayeho kuva amaraso .

Hari ubwoko bubiri bw'inkingo za factor VIII:

1. Recombinant Factor VIII: Factor ikorerwa muri laboratwari hakoreshejwe ikoranabuhanga rya genetiki. Iyi ni yo ikoreshwa cyane muri iki gihe.

2. Igipimo cya VIII gikomoka kuri plasma: Igipimo gikomoka kuri plasma y'amaraso y'umuntu.

Abantu bafite hemophilia yoroheje kugeza ku iringaniye bashobora no gukoresha umuti witwa Desmopressin (DDAVP) . Ibi bikora binyuze mu kurekura factor VIII yabitswe mu maraso.

Byongeye kandi, imiti yo kunywa nka Tranexamic Acid, irinda amaraso kuzura, ikoreshwa no mu bihe nko gukuramo amenyo.

Ucunga ute ubuzima bwa buri munsi?

Mu gihe ubana n'indwara ya hemophilia, ugomba gutekereza cyane ku mutekano.

• Gira imbaraga: Imyitozo ngororamubiri ikomeza imitsi. Imitsi ikomeye itanga uburinzi bwiza ku ngingo. Ariko, irinde imikino yo gukubitaho nka rugby na boxe. Koga, kugenda n'amaguru no kugendera ku igare (ufite ingofero) ni amahitamo meza. Vugana na muganga wawe ku bikorwa bikubereye.
• Rinda abana: Niba ufite umwana muto, ambara udupira two mu mavi, udupira two mu nkokora, n'ingofero mu gihe ukina. Irinde ibikoresho byo mu nzu yawe bifite impande zityaye.
• Ubuzima bw'amenyo:Komeza isuku y'amenyo yawe. Oza amenyo yawe buri munsi. Ibi bishobora kugabanya gukenera gukurwa amenyo no kuvurwa amenyo mu buryo bukomeye. Mbere yo kujya kwa muganga w'amenyo, menya neza ko umubwiye ko ufite indwara ya hemophilia.
• Imiti idakwiye gufatwa: Imiti igabanya ububabare nka aspirine na NSAIDs (urugero: ibuprofen, diclofenac) ishobora kurushaho kubuza amaraso kuzura. Ntugafate umuti uwo ari wo wose utabanje kugisha inama muganga wawe.