Osanyuse otya okulaba omupya ayongezeddwa mu maka go? Naye, teebereza, singa omwana wo omubiri gwonna gwali gubikkiddwa olususu oluwanvu, oluliko ebikuta, oluliko ebikuta amangu ddala ng’amaze okuzaalibwa? Ensisi n’okutya omuzadde yenna kw’awulira ng’alaba ekyo kizibu okukiteeka mu bigambo. Leero tugenda kwogera ku mbeera emu ng’eyo etali ya bulijjo nnyo era ey’amaanyi, Harlequin Ichthyosis. Totya nga owulira bino. Leero, olw’okukulaakulana kwa ssaayansi w’obusawo, waliwo engeri nnyingi ez’okuddukanyaamu embeera eno. Ka tuyige ebisingawo ku nsonga eno.
Mu ngeri ennyangu, obulwadde bwa Harlequin Ichthyosis kye ki?
Harlequin Ichthyosis ye bulwadde bw'olususu obusinga okuba obw'amaanyi era obw'amaanyi obuyitibwa Ichthyosis . Obulwadde bwa Ichthyosis mbeera ebaawo nga waliwo obuzibu mu ngeri obutoffaali bw’olususu lwaffe gye bukulamu n’okufa. Ebika ebimu ebya Ichthyosis biba bitono nnyo era bisobola okufugibwa ng’olabirira olususu obulungi. Wabula obulwadde bwa Harlequin Ichthyosis bulwadde obutta omuntu era nga yeetaaga okujjanjabibwa ennyo okuva lwe yazaalibwa.
Buno bulwadde bwa buzaale . Kino kitegeeza nti busikira bazadde okutuuka ku baana. Embeera eno tetera kubaawo nnyo ne kiba nti ekwata omwana omu yekka ku buli 500,000. Kyokka olw’obujjanjabi obw’omulembe ennaku zino, abaana abazaalibwa n’obulwadde buno kati bafuna omukisa okuwangaala okutuuka mu bukulu.
Bubonero ki obukulu obulaga obulwadde buno?
Obubonero bw’obulwadde buno bwawukana katono okusinziira ku myaka gy’omwana. Obubonero bw’omwana eyaakazaalibwa n’obw’omwana omukulu katono bwa njawulo. Tukimenye bwetuti tukitegeere bulungi.
| Ekibinja ky’emyaka | Obubonero obutera okulabibwa |
|---|---|
| Abalongo abaakazaalibwa |
|
| Abaana abakulu n’abantu abakulu |
Embeera eno eruma?
Yee, kino kiyinza okuluma omwana omuwere. Lowooza ku nnyatika enzito eziri mu lususu, obulumi bw’olususu okusekula. N’olwekyo, abasawo ne ba nurse mu kitongole ekirabirira abaana abaakazaalibwa (NICU) bawa omwana eddagala eriweweeza ku bulumi (e.g., Paracetamol, Ibuprofen). Bapima obulumi nga balondoola omutima gw’omwana n’okukaaba, era ne bakakasa nti beeyagaza nga bwe kisoboka .
Lwaki kino kigenda mu maaso? Ensonga eri etya?
Ensonga enkulu lwaki kino kibaawo kwe kukyuka mu ggiini ya ABCA12 . Kino ka tukitegeere mu ngeri ennyangu.
Lowooza ku ggiini eno eya ABCA12 nga ‘Delivery Service’ etambuza ebintu ebikulu ng’amasavu (lipids) okutuuka ku layeri ey’ebweru ennyo ey’olususu lwaffe. Layer eno ey’amasavu y’ekuuma olususu lwaffe nga lugonvu era nga lulamu bulungi. Mu muntu alina obulwadde bwa Harlequin Ichthyosis, olw’obulema mu buzaale buno, nti ‘Delivery Service’ tekola bulungi. N’ekyavaamu, amasavu tegatuuka bulungi mu butoffaali bw’olususu, era obutoffaali bw’olususu butuuma waggulu ku bulala, ne bukola oluwuzi oluwanvu era olukalu.
Okuva bwe kiri nti buno bulwadde bwa buzaale, omwana okusobola okufuna obulwadde buno, alina okusikira ku maama ne taata.Ensengekera y’obuzaale eno eriko obuzibu erina okuba nga yasikira. Singa abazadde bombi baba basitula obuzaale obulema (ekitegeeza nti tebalina bubonero, naye nga balina obuzaale), waliwo emikisa 25% (omu ku bana) nti omwana waabwe ajja kufuna obulwadde buno.
Abasawo bazuula batya obulwadde buno n’okubujjanjaba?
Emirundi mingi, abasawo basobola okuzuula embeera eno ng’azaalibwa olw’endabika y’omwana ey’enjawulo. Kyokka okukebera obuzaale kukolebwa okukikakasa. Ne mu kiseera ky’olubuto, abasawo bayinza okuteebereza embeera eno singa balaba obubonero ng’okukyuka kw’olususu oba akamwa k’omwana okugguka ennyo ku ‘ultrasound scans’. Bwe kiba kyetaagisa, era basobola okuzuula embeera eno nga bukyali nga bakeberebwa mu ngeri ey’enjawulo (nga amniocentesis) nga bali lubuto.
Enkola z’obujjanjabi
Obulwadde bwa Harlequin Ichthyosis si bulwadde buwonyezebwa ddala, naye obubonero busobola okuddukanyizibwa era omwana asobola okuwangaala obulungi, obulamu obuwanvu.
Obujjanjabi busobola okwawulwamu ebitundu bibiri ebikulu:
1. Obujjanjabi bw’ekitongole ekirabirira abaana abato (NICU): Wiiki ezisooka mu bulamu bw’omwana ze zisinga okubeera mu bulabe. Obujjanjabi obuweebwa mu kiseera kino bwe butaasa obulamu bw’omwana.
2. Enzirukanya y‟ekiseera ekiwanvu awaka: Okulabirira obulamu bwonna oluvannyuma lw‟okudda awaka okuva mu NICU.
Katutunuulire obujjanjabi buno mu bujjuvu.
| Enkola y’obujjanjabi | Okunnyonnyola |
|---|---|
| NICU ( Neonatal Intensive Care Unit) Obujjanjabi | |
| Obujjanjabi bwa Retinoid | Lino ddagala eriweebwa mu kamwa oba okusiiga ku lususu. Ayamba olususu oluwanvu okusekula amangu ate olususu oluli wansi ne luwona. Eno y’ebadde esinga okutaasa obulamu bw’abaana bano mu biseera ebiyise. |
| Okulabirira olususu | Ebizigo eby’enjawulo ebifukirira n’ebizigo bisiigibwa buli kiseera okukuuma obunnyogovu mu lususu. Ebizigo ebitta obuwuka bisiigibwa okutangira obuwuka okuyingira nga buyita mu nnyatika mu lususu. |
| Embeera erimu obunnyogovu | Obunnyogovu mu kifo ekikuumirwamu omwana buba bungi nnyo. Kino kikendeeza ku kukala kw’olususu. |
| Endya n’okuyonsa | Olw’okuba tasobola kunuuna mata, aweebwa emmere eyetaagisa ng’ayita mu katuba akatono akateekebwa mu lubuto lwe (feeding tube). |
| Enzirukanya y’emirimu okumala ebbanga eddene awaka | |
| Okunaaba ennyo | Okunaaba buli lunaku kiyamba okugonza olususu n’okuggyawo layers enzito ez’olususu olufu. |
| Okusiiga eddagala erifukirira buli kiseera | Olina okusiiga eddagala erifukirira oba ekintu nga vaseline ku mubiri gwonna emirundi egiwerako olunaku. Kino kijja kutangira olususu okukala n’okukutuka. |
| Okusisinkana abakugu | Kikulu nnyo okuba n'enkolagana ey'oku lusegere n'omusawo w'ensusu . Ate era, ojja kwetaaga okulaba abakugu mu bizibu by’amaaso, amatu n’ennyondo buli kiseera. |
| Obukuumi okuva ku bbugumu eringi | Engeri gy’otosobola kutuuyana, omubiri guyinza okubuguma ennyo mu bbugumu. N’olwekyo, olina okwegendereza omusana n’ebbugumu. |
Ekisinga obukulu kwe kwagala, okufaayo, n’amaanyi g’ebirowoozo by’abazadde n’ab’omu maka. Luno lugendo lwa kusoomoozebwa. N’olwekyo, kikulu nnyo okunoonya obuyambi okuva mu basawo, ababuulirira abantu, n’amaka amalala agalina abaana nga bano.
Obubaka Obutwala Awaka
- Harlequin Ichthyosis bulwadde bwa lususu obutatera kulabika nnyo naye nga bwa maanyi obuva ku buzaale. Tebusiigibwa.
- Embeera eno eyinza okuteeka obulamu bw’omwana omuwere mu matigga, n’olwekyo kyetaagisa okufuna obujjanjabi mu kifo ekirabirira abaana abaakazaalibwa (NICU) okumala wiiki ezisooka.
- Olw’obujjanjabi obw’omulembe naddala obwa retinoid therapy , omuwendo gw’abaana bano abawangaala gweyongedde nnyo.
- Eno mbeera ya bulamu bwonna. Kikulu okulabirira olususu buli kiseera, okuwa endya entuufu, n’okugoberera amagezi g’abasawo abakugu.
- Singa abantu abalina embeera eno baddukanyizibwa bulungi, basobola okuwangaala obulamu obuwanvu, obweyagaza, era obw’amakulu.
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