Bw’oba olina obulwadde bwa hemophilia, osanga omanyi engeri gye kiyinza okukunyiiza n’okutiisa okuvaamu omusaayi buli kiseera, oluusi awatali nsonga, era n’ofuna obuzibu okukomya
omusaayi okuva mu bitundu ebitonotono n’okusala. Oyinza okuba ng’omira dda eddagala erijjanjaba omusaayi gwo, oba oyinza okuba ng’omira eddagala okuguziyiza. Kyokka, olw’okukulaakulana kwa ssaayansi w’obusawo, kati waliwo obujjanjabi bungi obukola obulungi, obupya obw’okujjanjaba embeera eno. Kale leero, ka twogere ku ddagala eppya, ery’enjawulo. Kiyitibwa Qfitlia (fitusiran).
Okusooka, ka tulabe, lwaki omusaayi tegukoma mu bulwadde bwa hemophilia?
Mu ngeri ennyangu, waliwo obutoffaali obw’enjawulo obuyamba omusaayi gwaffe okuzimba. Bino tubiyita
" ensonga z'okuzimba omusaayi ." Nga omusenyu bwe gwetaagibwa okukwata amatoffaali awamu ng’ozimba bbugwe, ebintu bino ebizimba omusaayi byetaagisa nnyo okukomya okuvaamu omusaayi. Omuntu alina obulwadde bwa hemophilia abulwa ekimu ku bintu bino ebizimba omusaayi.
Ensonga zino bwe zikendeera, okukola omutendera omulala omukulu mu nkola y’okuzimba omusaayi, oguyitibwa
thrombin , kukendeera. Thrombin y’ensonga enkulu okukkakkana ng’ekola ekizimba ky’omusaayi n’ekomya okuvaamu omusaayi. Kale thrombin bw’ekendeera, kifuuka kizibu okukomya okuvaamu omusaayi nga gubaddewo. Otegedde? Ebiseera ebisinga, kye tubadde tukola ng’obujjanjabi okumala ebbanga eddene kwe kukola mu ngeri ey’ekikugu ensonga y’okuzimba (factor 8 oba 9) ebula mu mubiri gwo ne tugiwa
ng’empiso mu musuwa. Naye eddagala lya Qfitlia lye twogerako leero likola mu ngeri ya njawulo ddala.
Kale eddagala lino eppya eriyitibwa Qfitlia (fitusiran) liri ki?
Lino ddagala erikola mu ngeri eyeewuunyisa ennyo. Twayogedde emabegako ku ky’okuba nti omusaayi gwetaaga ekintu ekiyitibwa thrombin okusobola okuzimba. Mu mibiri gyaffe, waliwo puloteyina endala efuga okukola kwa thrombin eno, kwe kugamba, eyimiriza okukola thrombin endala. Kiyitibwa
antithrombin .Kilowoozeeko bw’otyo. Olina ekirungo ekizimba omusaayi (thrombin) mu mubiri gwo ekiyamba omusaayi gwo okuzimba. Naye waliwo ensonga endala (antithrombin) egifuga n’okugiremesa okukola. Mu bulwadde bwa hemophilia, okukola ensonga eyamba (thrombin) mu kusooka kuba kutono. Kale ensonga eremesa (antithrombin) bw’ekola mu ngeri eya bulijjo, okuzimba omusaayi kweyongera okukendeera. Qfitlia ky’ekola kwe
kukendeeza ku bungi bw’ekirungo kya antithrombin ekigiziyiza. Olwo, obungi bwa thrombin omubiri gwo gwe gukola mu butonde gukkirizibwa okukola obulungi awatali kulemesebwa. Kino kitegeeza nti ekozesa enkola y’omubiri gwennyini okukubiriza omusaayi okuzimba, okusinga okukuwa ensonga y’okuzimba gy’ofiiriddwa. Lino lye ddagala erisoose okukendeeza ku bulwadde bwa ‘anthrombin’ okukozesebwa mu kujjanjaba obulwadde bwa hemophilia.
Ka twongere okunnyonnyola enjawulo eriwo wakati w’enkola zino ebbiri ez’obujjanjabi.
Enjawulo eno osobola bulungi okugitegeera okuva ku kipande kino wammanga.
| Engeri | Obujjanjabi obw’ekinnansi (Factor Replacement) . | Obujjanjabi bwa Qfitlia (fitusiran). |
|---|
| Enkola y’emirimu | Ensonga y’okuzimba omusaayi (clotting factor) ebula mu mubiri eweebwa ebweru. | Kikendeeza ku antithrombin ekiziyiza omusaayi okuzimba, era kisobozesa omubiri okukozesa ennyo thrombin yagwo. |
| Engeri y'okugaba | Ebiseera ebisinga nga bayita mu misuwa. | Wansi w’olususu (subcutaneous). |
| Emirundi | Kiyinza okwetaagisa emirundi egiwerako mu wiiki. | Omulundi gumu mu mwezi oba buli luvannyuma lwa myezi ebiri (emirundi 6-12 omwaka). |
| Ku abo abalina ebiziyiza | Obujjanjabi bwa normal factor therapy tebukola, era obujjanjabi obulala obw’enjawulo (bypassing agents) bwetaagibwa. | Obujjanjabi buno era busobola okukozesebwa obulungi mu bantu abalina ebiziyiza (antibodies against the factors). |
Eddagala lino linsaanira era ndikozesa ntya?
Bw’oba olina obulwadde bwa hemophilia A oba B era ng’olina emyaka egisukka mu 12,
omusawo ayinza okulowooza oba eddagala lino likusaanira. Ekisinga obukulu kiri nti era esobola okukozesebwa mu bantu abafunye ebiziyiza (okuziyiza) obujjanjabi bwa factor obw’emabega. Kyokka nga tonnatandika bujjanjabi buno, omusawo wo ajja kukukebera
omusaayi emirundi egiwerako . 1.
Antithrombin level: Kino kipima obungi bwa antithrombin bw’eri mu musaayi gwo. Dozi ya Qfitlia esalibwawo okusinziira ku muwendo guno. 2.
Enkola y’ekibumba: Ekibumba kyo kirondoolebwa nga tonnafuna bujjanjabi n’okukifuna. Eddagala lino liweebwa
ng’empiso wansi w’olususu (wansi w’olususu). Kino kitegeeza nti tekiweebwa mu musuwa. Ggwe oba omulabirira osobola okugikuwa awaka ng’omaze okutendekebwa. Buweebwa mu lususu lw’olubuto, ekisambi oba emabega w’omukono ogwa waggulu. Olina okwewala ebifo ebirimu ebiwundu oba ebisala. Bw’oba wamira dda obujjanjabi obulala obw’obulwadde bwa hemophilia, oyinza okwetaaga okukomya oba okukyusa obujjanjabi obwo ng’omaze okutandika Qfitlia. Kino
omusawo ajja kukunnyonnyola bulungi.
Tolekera awo kumira ddagala lyo erikozesa kati oba okulekera awo okumira Qfitlia nga tolina magezi ga musawo. Bw’okola bw’otyo kiyinza okwongera ku bulabe bw’okuvaamu omusaayi.
Era tusaanidde okumanya ebizibu ebivaamu? Tuyinza tutya okuziziyiza?
Okufaananako n’eddagala lyonna, Qfitlia esobola okuba n’ebizibu ebimu. Kikulu okuzimanya n'okukola emitendera okuzitangira.
- Okuzimba omusaayi : Olw’okuba eddagala lino litumbula omusaayi okuzimba, tekitera nnyo kuzimba musaayi munda mu misuwa egitayagala. Omusawo ajja kusalawo ddoozi entuufu eri eddagala lyo eriziyiza omusaayi okukendeeza ku bulabe buno.
Kikulu nnyo okwekebeza omusaayi buli kiseera ng’omusawo bw’akugamba. Emiwendo gya antithrombin gitera okukeberebwa mu mwezi ogusooka, ogw’okusatu, ogw’okutaano n’ogw’omukaaga ogw’obujjanjabi. Eno y’engeri ddoozi entuufu ey’eddagala gy’esobola okukusalirawo n’engeri y’okukendeeza ku bulabe buno.
- Enziyiza z’ekibumba eziri waggulu: Abantu abamu bayinza okuba nga balina enziyiza z’ekibumba ezisukkiridde . Eno y'ensonga lwaki abasawo bulijjo balondoola embeera y'ekibumba nga bakebera omusaayi .
- Amayinja g’omu nnyindo n’okuzimba mu nnyindo: Singa ofuna obubonero ng’okulumwa ennyo mu lubuto, okuziyira, n’okusiiyibwa , tegeeza omusawo mu bwangu.
- Yinfekisoni: Waliwo akabi akatono ak’okukwatibwa yinfekisoni mu kifo we bakuba empiso. N’olwekyo, kikulu bulijjo okukuba empiso mu ngeri enyonjo era ng’omusawo bw’akulagidde. Enkola ennungi ey’obuyonjo, gamba ng’okunaaba engalo enfunda eziwera, nazo kikulu.
Okunoonyereza kulaga nti abantu abalina obulwadde bwa hemophilia (abo abalina n’abo abatalina inhibitors) abamira Qfitlia baalina ebiseera ebitono ennyo eby’okuvaamu omusaayi okusinga abo abataamira bujjanjabi bwonna obw’okuziyiza. Ate era, abantu abalina eddagala eriziyiza abaakyuka okuva ku bujjanjabi obulala ne bagenda mu Qfitlia baalina ebiseera ebitono eby’okuvaamu omusaayi. Naye kijjukire nti ebivaamu bino biyinza okwawukana okusinziira ku muntu.
Obubaka Obutwala Awaka
- Qfitlia (fitusiran) ddagala ddene erijjanjaba obulwadde bwa hemophilia A ne B erikola mu ngeri ey’enjawulo.
- Kino kikola nga kikendeeza ku bungi bw’ekirungo kya antithrombin ekiziyiza omusaayi okuzimba, mu kifo ky’okuwa ekirungo ky’omubiri ekitono eky’okuzimba ebweru.
- Eddagala lino likuba wansi w’olususu, so si mu musuwa, era litera kuweebwa nnyo, gamba ng’omulundi gumu mu mwezi oba buli luvannyuma lwa myezi ebiri.
- Omusawo ajja kuzuula oba obujjanjabi buno bukusaanira oluvannyuma lw’okukeberebwa omusaayi emirundi egiwera.
- Okwewala ebizibu ebivaamu, kyetaagisa okwekebeza omusaayi (naddala antithrombin n’enkola y’ekibumba) buli luvannyuma lwa kiseera ng’omusawo bw’akulagidde.
- Weewale okuyimiriza obujjanjabi bwa Qfitlia nga tolina magezi ga musawo olw’ensonga yonna.
Hemophilia, Hemophilia, Qfitlia, fitusiran, okuzimba omusaayi, okuvaamu omusaayi, clotting factor, antithrombin, obujjanjabi bwa hemophilia, eddagala eppya, ebizibu ebivaamu
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