Okulaba omwana eyaakazaalibwa ng’alwana n’atandika okutambula kisanyusa nnyo maama oba taata yenna. Naye oluusi, tulaba obutaba na maanyi ga binywa na kutambula mu baana abamu. Ensonga emu lwaki kino kiyinza okuba nga y’embeera gye twogerako leero eyitibwa Spinal Muscular Atrophy , oba SMA mu bufunze. Wadde nga guno mulamwa gwa maanyi katono, kikulu nnyo okutegeezebwa obulungi ku nsonga eno.
Mu ngeri ennyangu, obulwadde bw’okusannyalala kw’ebinywa by’omugongo (SMA) kye ki?
Obulwadde bwa Spinal Muscular Atrophy (SMA) bulwadde obuva ku buzaale. Ebinywa mu mubiri gwaffe bifugibwa ekika ky’obutoffaali bw’obusimu. Zino tuziyita obusimu obuyitibwa motor neurons . Kilowoozeeko ng’obwongo bwo bwe businga ekyuma kyo eky’amasannyalaze. Okuva awo, obusimu buno obw’omubiri (motor neurons) ze ‘waya’ ezitwala obubonero bw’amasannyalaze okutuuka ku binywa mu mikono n’amagulu go. Mu SMA, obusimu buno obukola emirimu mu mugongo gwonoonebwa era ne bunafuwa mpolampola. ‘Waya’ zino bwe zinafuwa, obubonero obuva mu bwongo tebutuuka bulungi mu binywa. N’ekyavaamu, ebinywa bitandika okukonziba n’okunafuwa.
Kiyinza okukwata abaana n’abantu abakulu. Omwana okusobola okufuna obulwadde buno, obuzaale obuleeta obulwadde buno bulina okusikira abazadde bombi . Abantu abakulu nga omu ku buli 50 mu kitundu ayinza okuba nga ye mutwale w’obuzaale buno. Kino kitegeeza nti wadde balina obuzaale bw’obulwadde mu mubiri gwabwe, tebalaga bubonero. Wabula waliwo omukisa nti omwana asikira obulwadde buno okuva ku bazadde babiri abasitula obulwadde buno. Okutwalira awamu, abaana nga omu ku buli 10,000 abazaalibwa asobola okufuna embeera eno.
Ekikulu, obuzibu bwa SMA bwawukana okusinziira ku myaka obubonero gye butandikira okulabika. Okutwalira awamu, singa obubonero butandika mu buwere, embeera eyinza okuba ey’amaanyi ennyo.
Ebika by’obulwadde bwa SMA ebikulu n’engeri zaabyo
Abasawo obulwadde buno babugabanyaamu ebika ebikulu ebiwerako okusinziira ku kiseera obubonero bwe butandika n’obuzibu bw’obubonero. Ka tulabe buli kika mu bujjuvu.
| Ekika kya SMA | Ekiseera obubonero we butandikira | Ebintu ebikulu n’ebikwata ku nsonga eno |
|---|---|---|
| Ekika kya 0 | Okuva nga tannazaalibwa |
|
| Ekika 1 (Obulwadde bwa Werdnig-Hoffmann) | Ku myezi nga 3 | |
| Ekika kya 2 | Wakati w’emyezi 7 ne 18 | |
| Ekika kya 3 (Obulwadde bwa Kugelberg-Welander) | Mu buto obusembayo oba mu buto obuto | |
| Ekika 4 | Mu bukulu (ebiseera ebisinga oluvannyuma lw’emyaka 30) . |
Lwaki olina okweraliikirira obubonero buno?
Nga bw’olaba, SMA okusinga ekosa ebinywa ebiyamba omubiri okutambula. Naye tekikoma awo.
- Okussa: Ebinywa mu kifuba kyaffe bituyamba okussa n’okufuluma. Ebinywa bino bwe binafuwa, tetusobola kussa bulungi. Kino kiyinza okuvaako okukwatibwa endwadde z’okussa enfunda eziwera nga ekifuba.
- Okulya: Ebinywa mu mumiro n’akamwa kaffe bituyamba okumira n’okuyonka emmere. Bwe baba banafu, omwana tasobola kuyonka oba kumira bulungi mmere. Kino kiyinza okuvaako endya embi.
- Enkula y’omubiri: Ebinywa ebiyamba okukuuma omugongo nga gugoloddwa bwe binafuwa, omugongo gutandika okukoona (scoliosis). Kino kiyinza okukaluubiriza okussa.
Waliwo obujjanjabi bwonna?
N’okutuusa kati tewali ddagala lya SMA. Kyokka mu myaka egiyise, enkulaakulana mu sayansi w’obusawo ereese obujjanjabi obupya obuwerako obusobola okufuga okukula kw’obulwadde n’okuddukanya obubonero.
Okugeza, obujjanjabi bubiri obukkirizibwa ekitongole kya Amerika ekya FDA bwe bino:
- Ekintunersen (Spinraza) agamba nti, .
- Onaasemnogene abeparvovec-xioi (Zolgensma) (Ekibumbe ky’Omubiri) .
Zino bujjanjabi buzibu nnyo era bwa bbeeyi era nga bukola ku mutendera gw’obuzaale. Kikulu nnyo okwogera n’omusawo wo ku kubeerawo kwazo n’okubeerawo kwazo mu Sri Lanka.
Ekikulu: Omukugu yekka akukebera oba omwana wo y’alina okusalawo obujjanjabi obusinga okukuyamba oba omwana wo. Tosalawo ng’osinziira ku mawulire agasangibwa ku Intaneeti.
Okugatta ku ekyo, obujjanjabi bw’omubiri, okukola dduyiro w’okussa, okubuulirira ku by’endya, era bwe kiba kyetaagisa, okulongoosa (e.g., okuyungibwa kw’omugongo) biyamba okutumbula omutindo gw’obulamu bw’omulwadde n’okuziyiza ebizibu.
Obubaka Obutwala Awaka
- Spinal Muscular Atrophy (SMA) bulwadde bwa buzaale obukwata obutoffaali bw’obusimu obufuga ebinywa byaffe.
- Obulwadde buno bwawulwamu ebika ebiwerako okusinziira ku myaka obubonero gye butandikira. Singa obubonero butandika ku myaka emito, embeera eyinza okuba ey’amaanyi ennyo.
- Singa omubiri gw'omwana wo guba "gufuuse ebizimba" era ng'afuna obuzibu okusitula omutwe gwe, okwekulukuunya oba okutuula waggulu, laba omusawo w'abaana alina ebisaanyizo mu bwangu.
- Wadde nga SMA tesobola kuwona ddala, obujjanjabi obw’omulembe n’enkola ng’okujjanjaba omubiri bisobola okuyamba okufuga obulwadde buno n’okutumbula omutindo gw’obulamu.
- Okusalawo kwonna ku bujjanjabi kulina okukolebwa oluvannyuma lw’okuteesa n’omusawo wo.
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