Omwana eyaakazaalibwa ssanyu lingi eri amaka, si bwe kiri? Buli omu alinze kulaba cuteness ya bbebi. Naye, oluusi, ne bwe kiba nga tekitera kubaawo nnyo, bwe tulaba enkyukakyuka ezimu mu ndabika y’omwana waffe omuto, maama oba taata asobola okuwulira nga yeeraliikirira nnyo era ng’atidde. Just like that, Barber Say Syndrome mbeera ya buzaale esangibwa mu bantu batono nnyo mu nsi. Katukwogere ku nsonga eno mu bujjuvu katono leero, kubanga kikulu nnyo okukimanya ku kino.
Obulwadde bwa Barber Say Syndrome kye ki?
Mu ngeri ennyangu, obulwadde bwa Barber-Sey embeera y’obuzaale etali ya bulijjo nnyo . Kizaalibwa, ekitegeeza nti kibeerawo ng’azaalibwa . Embeera eno esobola okuleeta enkyukakyuka ezimu oba obutakola bulungi mu mubiri gw’omwana omuwere naddala mu ndabika ey’ebweru, gamba nga ffeesi.
Naye ekisinga obukulu okujjukira wano kiri nti embeera eno etera obutakosa bitundu by’omwana eby’omunda oba obusobozi bw’okutegeera (cognition) . Kino kitegeeza nti engeri omwana gy’alowoozaamu n’okuyiga eyinza okusigala nga ya bulijjo. Kyokka obutonde n’obuzibu bw’obubonero buno biyinza okwawukana okusinziira ku mwana. Abalongo abamu bayinza okufuna:
- Ebifaananyi eby’enjawulo mu maaso.
- Enviiri ezikula ennyo mu ngeri etaali ya bulijjo (hypertrichosis) .
- Olususu olugonvu ennyo, oluweweevu (atrophic) .
Ani ayinza okufuna embeera eno? Kitera kitya?
Okuva bwe kiri nti obulwadde bwa Barber-Say syndrome buva ku buzaale, busobola okukwata omuntu yenna. Kyokka, mbeera ya bbula nnyo nnyo . Bubaawo mu baana abatakka wansi wa muntu omu ku buli bukadde mu nsi yonna. Bannasayansi balowooza nti mu nsi nga Amerika, abantu 1 ne 300 abalina obulwadde buno. Kale, oyinza okulowooza ku ngeri kino gye tekitera kubaawo, nedda?
Obubonero bwe buliwa? Okitegeera otya?
Obubonero bw’obulwadde bwa Barber-Say syndrome busobola okulabibwa nga ozaalibwa (congenital) . Kyokka nga bwe kyayogeddwako emabegako, abalongo bonna tebajja kuba n’obubonero bwe bumu, era n’obuzibu bw’obubonero buno buyinza okwawukana.
Ebintu ebitongole ebirabika ku maaso
Embeera eno eyinza okuleeta enkyukakyuka ezimu ezirabika mu maaso g’omwana. Okugeza nga:
- Obutabeerawo oba okukula obubi ennyo kw’enviiri z’amaaso.
- Amaaso agali mu bbanga erigazi .
- Obutabeera na nviiri za maaso.
- Ebikowe by'amaaso ebikyusiddwa ebweru .
- Ekituli ekiri wakati w’enkoona z’amaaso g’omwana awali ebikowe ebya waggulu n’ebya wansi kibeera kinene okusinga ku kya bulijjo.
- Ennyindo ekyuse waggulu .
- Ennyindo ennene eyeetooloovu.
- Omutala omugazi ogw’ennyindo.
- Akamwa akagazi.
- Okubutuka kw'amannyo nga kikeerezi .
Engeri endala ez’omubiri
Ng’oggyeeko ebifaananyi mu maaso, osobola n’okulaba ebifaananyi ebirala nga:
- Enviiri ezitali za bulijjo, ezisukkiridde okukula (hypertrichosis) ku mubiri gw’omwana ogusinga obungi.
- Olususu lusumulula nnyo era nga luseeyeeya . Olususu luno lunyirira okusinga olwa bulijjo era ludda mu ngeri yaalwo nga lugoloddwa (olususu olugaziyizibwa ennyo).
- Obuzibu mu kuwulira .
- Obutabeerawo oba ebitundu by’amabeere bitono nnyo.
- Obutabeerawo oba obutakula bulungi bwa nfuli.
- Okulemererwa okukulaakulana . Kino kitegeeza nti omwana agenda yeeyongera okugejja n’okukula mpola.
Lwaki embeera eno ebaawo? Ensonga ze ziruwa?
Ekisinga okuvaako obulwadde bwa Barber-Say syndrome y’enkyukakyuka mu buzaale oba enkyukakyuka mu buzaale bwa `TWIST2` . Ensengekera eno ekola puloteyina eyeenyigira mu kukula kw’obutoffaali bw’amagumba mu mubiri gwaffe. Kale, bwe wabaawo ekikyamu mu buzaale buno, obubonero obulaga obulwadde buno bulabika.
Olw’okuba obulwadde buno tebutera kubaawo, okunoonyereza ku nkola y’okusikira kutono. Emirundi egisinga, kirabibwa nti omwana bw’asikira obuzaale obukyusiddwa okuva ku omu ku bazadde be, omwana atera okukwatibwa obulwadde buno . Kino kiyitibwa enkola ya autosomal dominant pattern .
Kyokka, oluusi kiyinza okusikira mu nkola ya autosomal recessive pattern . Kino kitegeeza nti omwana ajja kufuna embeera eno singa asikira obuzaale obukyusiddwa okuva mu bazadde bombi . Mu mbeera endala, omwana asobola okufuna embeera eno olw’enkyukakyuka empya (de novo mutation) mu TWIST2 gene , nga tewali muntu yenna mu maka yali afunye obulwadde buno emabegako.
Kino kizuulibwa kitya?
Omusawo w'omwana wo ajja kusooka kumukebera omubiri . Mu kukeberebwa kuno, bajja kunoonya obubonero obw’enjawulo obulaga embeera eno, gamba ng’enkyukakyuka mu maaso, enviiri ezisukkiridde okukula, n’obutonde bw’olususu. Era bajja kubuuza ku byafaayo by’amaka go ag’obuzaale.
Okukakasa nti omuntu azuuliddwa, omusawo ajja kulagira okukeberebwa obuzaale . Kino kizingiramu okutwala akatundu akatono ku musaayi gw’omwana n’okunoonya enkyukakyuka mu buzaale. Okusingira ddala, banoonya enkyukakyuka mu ggiini eyayogeddwako emabegako eya `TWIST2` .
Obujjanjabi bwe buruwa?
Mu butuufu, tewali ddagala lyonna eriwonya obulwadde bwa Barber-Say syndrome n’okutuusa kati . Kyokka okusinziira ku bubonero bw’omwana, enteekateeka y’obujjanjabi entongole esobola okukolebwa okusinziira ku buli mwana.Omusawo w’abaana omwana wo ajja kukolagana ne ttiimu y’abakugu okukola kino. Mu bino biyinza okuli:
- Ophthalmologist : Omusawo azuula n’okujjanjaba endwadde ezikwatagana n’amaaso n’okulaba.
- Omusawo w’ensusu : Omusawo ajjanjaba endwadde ezikwata ku lususu, enviiri, n’emisumaali.
- Omubuulirizi w’obuzaale : Omukugu mu by’obulamu akuyamba okutegeera akabi akali mu kusikira obulwadde bw’obuzaale oba okubuyisa mu mwana wo.
Ng’obujjanjabi obulala, waliwo ebika by’okulongoosa obuveera ebiwerako ebiyinza okukolebwa okutereeza obulema mu mubiri gw’omwana. Abantu bangi balaba enjawulo nnene nga tebannaba kulongoosebwa kuno n’oluvannyuma lw’okulongoosebwa. Okulongoosa kuno kuyinza okuli:
- Okulongoosa amannyo nga kuzingiramu ffeesi, akamwa oba akawanga (okulongoosa amaaso).
- Okulongoosa obuveera mu maaso, gamba ng’okuyingiza ekintu mu matama (malar implants).
- Okulongoosa ebikowe by’amaaso (`blepharoplasty` oba `tarsorrhaphy`).
- Okulongoosa okuddamu okukola ennyindo (rhinoplasty).
- Okulongoosa emimwa `(cheiloplasty)`.
- Okulongoosa okutereeza ensaya (okulongoosa ensaya mu ngeri ya orthognathic).
- Okulongoosa ekirevu (genioplasty).
- Okwongera amabeere (kino kikolebwa oluvannyuma lw’okuvubuka).
Obujjanjabi obulala buyinza okuli:
- Obujjanjabi bwa layisi ku nviiri okukula ennyo (hypertrichosis).
- Ebizibu ebirala eby’amaaso bisobola okujjanjabibwa n’amaziga ag’ekikugu, eddagala erisiiga amaaso, n’eddagala eritta obuwuka .
Waliwo engeri y’okuziyiza kino?
Olw’okuba obulwadde bwa Barber-Say mbeera ya buzaale, tewali ngeri yonna gye tuyinza kubuziyiza . Kyokka bw’oba osuubira omwana, kikulu okwogera n’omusawo wo ku ky’okukebera obuzaale . Okukebera obuzaale kuyinza okukuyamba okutegeera akabi akali mu kuyisa obuzaale obumu eri omwana wo.
Omwana alina obulwadde bwa Barber Say Syndrome awangaala ki?
Wadde nga kino kiyinza okuwulikika ng’omugugu omunene okuwulira, obulamu bw’omuntu alina obulwadde bwa Barber-Se bwa bulijjo . Omwana wo ne bw’aba n’ebizibu by’omubiri, gamba ng’okulema, nga bwe kyayogeddwako emabegako, obulwadde buno ebiseera ebisinga tebukosa bitundu by’omubiri eby’omunda oba amagezi . N’olwekyo, enkula y’omubiri gw’omwana n’enkula y’okwogera birina okukula mu ngeri eya bulijjo.
Kyokka, ku nkomerero, obulamu bw’omwana wo obw’ekiseera ekiwanvu bujja kusinziira ku ngeri n’obuzibu bw’obubonero bwe. N’olwekyo, kirungi okubuuza omusawo wo ku bulamu bw’omwana wo obw’enjawulo.
Ebibuuzo ebikulu by’olina okubuuza omusawo wo
Kya bulijjo okuba n’ebibuuzo bingi mu birowoozo mu kiseera nga kino. Buuza omusawo w’omwana wo ebibuuzo nga bino okukuyamba okugonjoola ebikweraliikiriza:
- Embeera eno etatera kubaawo etya mu mwana wange?
- Obubonero bwa omwana wange bwa maanyi butya?
- Omwana wange yeetaaga bujjanjabi bwa ngeri ki?
- Omwana wange agenda kwetaaga kulongoosebwa kwa ngeri ki?
- Omwana wange awangaala ki?
Okufuuka omuzadde omulundi ogusooka kiyinza okuba ekizibu. Okuzuula nti omwana wo alina embeera y’obuzaale etali ya bulijjo kiyinza okukuzibuwalira n’okusingawo. Omwana wo bw’aba alina obulwadde bwa Barber-Sey syndrome, lowooza ku ky’okwegatta ku kibiina ekiyamba amaka g’abaana abalina embeera ezitatera kulabika . Ekibinja ng’ekyo kiyinza okuba engeri ennungi ey’okunoonya eby’okuddamu mu bibuuzo byo n’okufuna essuubi ku mbeera y’omwana wo.
N’ekisembayo, obubaka obutwala awaka
Tusuubira nti bye twogeddeko bikuwadde amagezi ku bulwadde bwa Barber Say Syndrome. Jjukira nti omwana wo ne bw’aba alina enkyukakyuka mu ndabika mu mubiri, obusobozi bwe obw’okutegeera bulina okuba obwa bulijjo . Kino kitegeeza nti omwana wo alina okusobola okubeera n’obulamu obwa bulijjo era obuvaamu ebibala .
Ekisinga obukulu kwe butatya, okufuna amagezi amatuufu mu basawo, n’okuwa omwana wo omukwano n’okulabirira kw’aba yeetaaga. Bw’oba olina ekibuuzo kyonna, yogera n’abasawo bo mu lwatu. Beetegefu okukuyamba.
Tusuubira nti amawulire gano gaali ga mugaso gy'oli!
` Barber Say Syndrome, endwadde z’obuzaale, endwadde ezitatera kulabika, obulamu bw’abaana, obulema mu maaso, endwadde z’olususu, okubudaabudibwa ku buzaale











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