Saamai kana baba, tine hanya zvikuru nezvese zvidiki nezvemwana wedu, handiti? Kukura kwake, chitarisiko chake, maitiro ake... Tinoteerera zvinhu izvi zvese. Dzimwe nguva, patinoona shanduko diki muchitarisiko chemwana, semuenzaniso, chigunwe chikuru chakakura zvishoma, kana kunonoka kudiki mukukura, tinonzwa kutya zvishoma. Panguva dzakadaro, tinofanira kuziva nezvechirwere chemajini chisingawanzoitiki asi chakakosha. Ndiyo Rubinstein-Taybi Syndrome.
Chii chinonzi Rubinstein-Taybi Syndrome (RTS)?
Zvichitaurwa zviri nyore, Rubinstein-Taybi Syndrome chirwere chisingawanzoitika chinokanganisa masisitimu akawanda mumuviri. Chinopfupikiswa seRTS. Zviratidzo zvikuru zvinoonekwa muvana vane chirwere ichi zvigunwe zvikuru nezvigunwe zvikuru zvakafara zvisina kujairika , zvimwe zvinhu zvakasiyana zvechiso, uye kunonoka kukura kwemwana .
Dambudziko iri rakatanga kutsanangurwa muna 1957. Zvisinei, rakazozivikanwa sechirwere navanachiremba vaviri, Dr. Jack Rubinstein naDr. Hooshang Taybi muna 1963. Mazita avo anoshandiswa pachirwere ichi.
Ndezvipi zviratidzo zvikuru zveRTS?
Havasi vana vese vane RTS vane zviratidzo izvi zvese. Zvisinei, pane zvimwe zviratidzo zvakajairika. Ngatizviparadzanisei muzvikamu zviviri zviri nyore kunzwisisa.
| Rudzi rwehunhu | Zvinhu zvekuona |
|---|---|
| Zviratidzo zvemaziso | |
| Nzvimbo yeziso | Makona ekunze emaziso anodzika pasi uye daro riri pakati pemaziso rinowedzera. |
| Mhuno | Maziso akarembera (Ptosis) . |
| Tsiye | Tsiye dzakareba kwazvo. |
| Utachiona | Kubatwa nezvirwere zvemaziso nguva nenguva nekuda kwekuvharika kwemigero yemisodzi. |
| Zvimwe zviratidzo zvemuviri (Zviratidzo Zvisiri zveOcular) | |
| Maoko netsoka | Zvigunwe zvikuru nezvigunwe zvakafara kupfuura zvakajairika uye dzimwe nguva zvakakombama. |
| Kukura | Kureba kupfupi nekuda kwekunonoka kukura kwemapfupa. |
| Musoro nechiso | Musoro mudiki (Microcephaly) , mhino yakaita semuromo, mhino yakafara, mukanwa wepamusoro wakakombama kumusoro, shaya diki yepasi. |
| Zvimwe zvinhu | Kuomerwa nekudya, hutachiona hwekufema hunowanzoitika, zvikanganiso zvemwoyo, itsvo, uye musana, kukura kwebvudzi zvakanyanya, uye machende asina kukwira muvakomana. |
Kuchinja kunooneka mukukura uye maitiro
Kuwedzera pazviratidzo zvemuviri, vana vane RTS vanogona kusangana nekunonoka uye shanduko mukukura uye maitiro.
Kunonoka kwepfungwa nekudzidza
Vana vane RTS vanogona kunge vachikura zvishoma mupfungwa kupfuura vana vakajairwa. Kukura kwekunonoka uku kunosiyana kubva kumwana mumwe kuenda kune mumwe. Vamwe vanogona kunge vachinonoka zvishoma, nepo vamwe vachinonoka zvakanyanya. Vangave vachiomerwa nekufunga, kudzidza zvinhu zvitsva, uye kugadzirisa matambudziko. Izvi zvinowanzoonekwa mwana paanotanga chikoro.
Kunonoka muhunyanzvi hwemuviri nehwekufambisa makumbo
Vana ava vanowanzova netsandanyama dzisina kusimba . Izvi zvinogona kukonzera kunonoka kuita mabasa emuviri akadai sekukunguruka, kugara, uye kufamba. Vanogonawo kuva nematambudziko ekudzikama uye kudzora mafambiro.
Kunonoka pakutaura nekutaurirana
Vana vanosvika 90% vane RTS vanononoka zvikuru pakukura kwekutaura. Chimwe chezviratidzo zvekutanga zveizvi chingave kuoma kudya , sezvo kudya nekutaura zvinoda kurongeka kwakanaka kwetsandanyama dzemuromo nerurimi.
Yeukai kuti, hazvisi zvese izvi zvinononoka zvinoitika mumwana wese. Zvakare, hunyanzvi uhu hunogona kuvandudzwa nekurapwa kwakakodzera uye kurapwa.
Chii chiri kukonzera mamiriro ezvinhu aya?
Kana vakaudzwa kuti ichi chirwere chemajini, vamwe vabereki vanogona kutya kuti ichi chinhu chavakagara nhaka.
Zvakakosha kunzwisisa kuti kazhinji, chirwere ichi chinokonzerwa nekuchinja kwemajini mumuviri wemwana. Izvi zvinoreva kuti hachigamuchirwi kubva kuna amai kana baba. Saka, kune vaviri vane hutano hwakanaka vane mwana ane RTS, njodzi yekuti mwana wavo anotevera awane chirwere ichi isingasviki 1%.
Zvisinei, kashoma, kana mumwe mubereki aine chirwere cheRTS, pane mukana we50% wekuti mwana agare nhaka yejini iri. Izvi zvinonyanya kukonzerwa nekuchinja kwemajini eCREBBP neEP300 .
Nzira yekuziva sei RTS status?
Kazhinji, chiremba anoongorora chirwere ichi nekuongorora hunhu hwemwana, kunyanya zvigunwe zvakafara, maziso akatsveyama, uye mukanwa wepamusoro wakakwidzwa.
Kuti zvisimbiswe kuti chirwere ichi chavepo, dzimwe nguva dzimwe nguva panoitwa mimwe miedzo.
- X-rays: Tarisa shanduko chaiyo mumapfupa emaoko nemakumbo.
- Kuskena uropi: Tarisa mashandiro emagetsi europi.
- Kuongororwa kweMajini: Kuongororwa uku kunogona kuitwa kuti kusimbiswe kana paine shanduko dzemajini dzine chekuita neRTS. Zvisinei, vamwe vana vane RTS vanogona kusaonekwa shanduko iyi yemajini nekuongororwa.
Vamwe vana vanogona kuongororwa pakuzvarwa. Vamwe vanoongororwa gare gare. Zvinoenderana nekuoma kwezviratidzo.
Ndezvipi zvinorapwa izvi?
Chekutanga, hapana mushonga weRTS, asi unogona kugadziriswa uye mwana anogona kurarama hupenyu hunobudirira nekuvandudza hunyanzvi hwake uye kugadzirisa zviratidzo zvake .
Chirongwa chekurapa chinoenderana nezviratidzo zvemwana. Uku kushanda pamwe chete.
Izvi zvinoreva kuti, kwete chiremba mumwe chete,Vanachiremba vevana, vanachiremba vemwoyo, vanachiremba vemapfupa, nyanzvi dzenzeve, mhuno, nepahuro, pamwe chete nevarapi vekutaura vanoshanda pamwe chete kuronga kurapwa kwakanakisa kwemwana.
Heano mamwe enzira huru dzekurapa:
- Kuongororwa nguva dzose: Kukura kwemwana kunoongororwa uchishandisa machati ekukura kwake. Uyewo, maziso nenzeve zvinoongororwa gore rega rega.
- Kuvhiyiwa: Kana minwe nezvigunwe zvakakombama kana paine zvikanganiso munhengo dzakadai semwoyo kana itsvo, kuvhiyiwa kungadiwa kuti zvigadziriswe.
- Kurapa: Izvi zvakakosha zvikuru. Zvinhu zvakaita seSpeech Therapy, Physical Therapy, uye Behavioral Therapy zvakakosha zvikuru kudzivirira kunonoka kwekukura kwemwana.
- Dzidzo Yakakosha: Kutumira mwana kuzvirongwa zvedzidzo yakakosha zvakagadzirirwa hunyanzvi hwake hwekudzidza zvinotsigira zvikuru kukura kwake kwepfungwa.
- Mazano eMajini: Mazano eMajini akakosha zvikuru kuti mhuri dzinzwisise chirwere ichi zvakajeka, matanho ekutora, uye njodzi dzine chekuita nevana vemangwana.
Chinhu chinonyanya kukosha ndechekuti iwe, semubereki, uzive zvakawanda nezvechirwere chemwana wako uye ushande pamwe chete nechikwata chekurapa chiri kurapa mwana wako.
Mharidzo Yekuenda Nayo Kumba
- Rubinstein-Taybi Syndrome (RTS) chirwere chisingawanzoitika mumajini. Kazhinji hachikonzerwi nemhosva yevabereki.
- Hunhu hukuru hwakakura kupfuura zvigunwe zvikuru zvetsoka, chitarisiko chechiso chakasiyana, uye kunonoka kukura.
- Kunyange hazvo isingarapike zvachose, kune mishonga inoshanda zvikuru yekurapa zviratidzo uye kuvandudza hupenyu hwemwana.
- Kutanga kurapwa kwakadai sekurapa kutaura nekurovedza muviri pakutanga kwakakosha zvikuru pakukura kwemwana.
- Kana muine kusava nechokwadi nezvezviratidzo izvi mumwana wenyu, musavhunduka, asi taurai nachiremba wenyu kana chiremba wevana nezvenyaya iyi.
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