Ng’omuzadde, wali owulira ng’omwana wo wa njawulo katono ku baana abalala? Mpozzi alwawo katono okwogera, oba olyawo atwala ekiseera ekiwanvuko katono okuyiga ekipya. Kino kiyinza okubaawo ensonga nnyingi. Naye leero tugenda kwogera ku mbeera ey’enjawulo ey’obuzaale eyinza okuleeta embeera ng’eno, naye nga teyogerwako nnyo mu bantu baffe. Oyo ye bulwadde bwa Fragile X Syndrome .
Mu ngeri ennyangu, obulwadde bwa Fragile X Syndrome kye ki?
Eno mbeera ya buzaale. Kino kitegeeza nti kiyisibwa okuva ku mulembe okudda ku mulala. Embeera eno eyinza okukosa okuyiga kw’omwana, enneeyisa ye, endabika ye, n’obulamu bwe okutwalira awamu. Abaana abamu bayinza okuba n’obubonero obutono ennyo, ate abalala bayinza okukosebwa ennyo. Okutwalira awamu, abalenzi bakosebwa nnyo okusinga abawala .
Abaana abazaalibwa n‟embeera eno bayinza okuba n‟ebizibu mu nkulaakulana, gamba ng‟obulemu mu kuyiga n‟obulemu mu magezi. Naye teweeraliikiriranga. Abaana bano bwe baba bajjanjabiddwa bulungi, basomesebwa mu ngeri ey’enjawulo, n’obujjanjabi, basobola okuyiga n’okukulaakulana okutuuka ku busobozi bwabwe bwonna.
Bubonero ki obulaga embeera eno?
Omwana alina Fragile X asobola okulaga obubonero obw’enjawulo. Obubonero obumu buba bwa nneeyisa, ate obulala bwa mubiri. Bino ka tubitunuulire okwawukana.
| Ekika ky’engeri | Ebintu ebya bulijjo ebirabibwa |
|---|---|
| Ebizibu mu kuyiga n‟enneeyisa |
|
| Engeri ezirabika mu mubiri |
Ekikulu nti obubonero buno bwonna tebulabika mu buli mwana. Ate era, okubeera n’obubonero buno kyokka tekitegeeza nti omwana alina Fragile X. Kikulu nnyo okulaba omusawo okuzuula ekituufu.
Akakwate akaliwo wakati wa Fragile X ne autism
Waliwo akakwate wakati w’embeera zino ebbiri. Abaana nga 40% abalina Fragile X nabo bayinza okuba n’obulwadde bwa autism. Era, abaana nga 80% bayinza okuba n‟ebizibu by‟okussaayo omwoyo, gamba nga `ADD` oba `ADHD`.
Embeera eno eyisibwa etya okuyita mu milembe?
Kino kizibu katono naye nja kukinnyonnyola mu ngeri ennyangu.
Nga bw’omanyi, buli kintu mu mubiri gwaffe kifugibwa obuzaale. Embeera eno eva ku nkyukakyuka mu ggiini eyitibwa FMR1 . Ensengekera eno esangibwa ku nsengekera ya X chromosome . Puloteeni ekolebwa obuzaale buno obwa FMR1 yeetaagibwa nnyo obutoffaali bw’obusimu mu bwongo okuwuliziganya ne bannaabwe. Puloteeni eno yeetaagibwa obwongo bw’omwana okukula obulungi.
Abaana abalina Fragile X bakola kitono nnyo oba tebakola puloteyina eno mu mibiri gyabwe.
Teebereza, waliwo ekitundu ekiyitibwa ‘CGG’ mu ggiini eno eya FMR1. Mu muntu omulamu obulungi, ekitundu kino kiddibwamu emirundi 5 ku 40 gyokka. Naye mu mwana alina Fragile X, ekitundu kino kiddibwamu emirundi egisukka mu 200 . Okuddiŋŋana kuno gye kukoma okubeerawo, obubonero gye bukoma okuba obw’amaanyi.
Kino kiva ani eri omwana?
- Okuva ku maama: Singa maama aba mutambuze w’obuzaale buno obwa FMR1 obukyusiddwa, omwana we (ka kibeere musajja oba mukazi) alina emikisa gya 50% okubeera n’embeera eno.
- Okuva ku taata: Taata bw’aba n’obuzaale buno, abaana abakazi bokka be bajja okubusikira okuva gy’ali. Abaana abasajja tebasikira buzaale buno kubanga bafuna ensengekera ya Y okuva ku kitaabwe.
Eno y’ensonga lwaki abalenzi basinga kukosebwa nnyo embeera eno. Okuva abawala bwe balina X chromosomes bbiri, ne bwe kiba nti emu erina ekizibu, endala X chromosomes ennungi esobola okufuga okwonooneka okutuuka ku ddaala eritali limu.
Okuzuula n’okujjanjaba
Tewali nsonga za bulabe eziyinza okufugibwa. Obulabe obusinga obuli mu maka ge byafaayo by‟embeera eno. N’olwekyo, singa omuntu mu maka go alina ebyafaayo by’obulema mu kuyiga oba autism, oyinza okwagala okwogera n’omusawo wo ku ky’okubuulirirwa ku buzaale nga tonnazaala mwana.
Ozuula otya obulwadde buno?
- Mu kiseera ky’olubuto: Kino osobola okukikebera ne bwe kiba nti omwana tannazaalibwa. Ebigezo ebiyitibwa amniocentesis (okukebera amazzi g’omu lubuto) oba chorionic villus sampling (CVS) (okukebera ekitundu ky’enseke) bisobola okukozesebwa okulaba oba enkyukakyuka y’obuzaale bwa FMR1 eriwo.
- Oluvannyuma lw’okuzaalibwa: Embeera eno esobola okuzuulibwa obulungi ng’okeberebwa omusaayi mu ngeri ennyangu ng’omwana amaze okuzaalibwa.
Obujjanjabi bwe buruwa?
Okusooka, jjukira nti tewali ddagala lya Fragile X n’okutuusa kati. Wabula waliwo obujjanjabi bungi obuyinza okuyamba okuddukanya obubonero n’okuyamba omwana okubeera n’obulamu obulungi. Obujjanjabi buno gye bukoma okutandika amangu, gye bukoma okuba ebirungi.
| Enkola y’obujjanjabi n’okuddukanya | |
|---|---|
| Obujjanjabi |
|
| Ebyenjigiriza n’obutonde bw’ensi | |
| Eddagala | Omusawo ayinza okumuwa eddagala okufuga embeera ng’okukonziba, obuzibu bw’okussaayo omwoyo (ADHD), okweraliikirira n’okwennyamira. Towa mwana wo ddagala lyonna nga tolina magezi ga musawo. |
Embeera eri etya mu bukulu?
Fragile X mbeera ya bulamu bwonna. Kyokka, abantu bangi bwe baba obuwagizi n’obujjanjabi obutuufu, babeera n’obulamu obulungi. Abakyala nga kimu kya kusatu basobola okubeera nga beetongodde. Abasajja batera okwetaaga obuwagizi obusingako.
Embeera eno tekendeeza ku bulamu bwazo. Balina obulamu bwe bumu n’omuntu omulamu obulungi. Ekikulu kwe kutegeera obusobozi bwabwe n’okubazzaamu amaanyi okusinziira ku busobozi bwabwe.
Obubaka Obutwala Awaka
- Fragile X syndrome mbeera ya buzaale eyisibwa mu milembe. Tekiva ku nsobi ya muntu yenna.
- Kino kitera okukosa ennyo abalenzi.
- Kiyinza okuli obuzibu mu kuyiga, okulwawo okwogera, obuzibu mu nneeyisa, n’obubonero obumu obw’omubiri.
- Kikulu nnyo okuzuula obulwadde buno nga bukyali n’okutandika obujjanjabi obutuufu (obujjanjabi obw’okwogera, obw’emirimu, obw’enneeyisa) eri omwana.
- Wadde nga tewali ddagala lyonna eriwonya kino, singa omwana amuddukanya bulungi n’okumuwa obuyambi mu ngeri ey’okwagala, asobola okuyambibwa okubeera n’obulamu obw’amakulu era obw’essanyu.
- Bw’oba olina ekikweraliikiriza ku nkula y’omwana wo, yogerako n’omusawo w’abaana (omusawo) wo awatali kulwa.
💬 Comments (0)
Tewali bigambo biwandiikiddwa n'okutuusa kati. Yongera wano comment yo omulundi ogusoose.
Yongera ku comment yo