Zvinofadza chero mubereki kuona mwana wake achinyemwerera uye achifara nguva dzese, handiti? Asi wakambofunga here kuti dzimwe nguva kufara uku uye maitiro ekuombera maoko zvinogona kuva chiratidzo chechirwere chisingawanzoitika mumajini? Ungashamisika kunzwa izvi. Nhasi tiri kutaura nezvechimwe chezvirwere zvakadaro, Angelman Syndrome.
Zvichitaurwa zviri nyore, chii chinonzi Angelman Syndrome?
Angelman Syndrome chirwere chisingawanzoitiki chinokanganisa kukura, kutaura, kuenzana, uye kufamba kwemwana wako. Mune zvimwe zviitiko, chinogonawo kukonzera pfari.
Paunotarisa mwana ane chirwere ichi, uchaona kuti anogara achifara uye ari mumamiriro ezvinhu ari nani kupfuura mwanawo zvake. Vanonyemwerera zvikuru, vanoseka zvinonzwika. Vanoita kufamba vachirova maoko kana vachifara. Kutaura zvazviri, tinonzwawo kufara patinoona mwana achinyemwerera. Saka, zvingaita sezvisinganzwisisike kwauri kufunga kuti hunhu uhwu hwemwana hunogona kuva chiratidzo chechirwere.
Zvimwe zviratidzo zvinogona kutanga kuoneka mwana paanokura. Semuenzaniso, unogona kutanga kuona kunonoka kukura kwemwana , sekutadza kutaura shoko rake rekutanga paanosvika gore rimwe chete. Kubatwa nepfari kunogonawo kuitika pakati pemakore maviri nematatu.
Dambudziko iri harisi dambudziko guru kuhupenyu. Kureva kuti, haripfupisi hupenyu hwemwana. Zvisinei, mwana paanokura, anogona kusangana nematambudziko ekufamba, kutaura, uye kukura. Asi musazvidya mwoyo, kune mishonga yakanaka yekugadzirisa zviratidzo izvi.
Dambudziko iri rakajairika zvakadii?
Chirwere cheAngelman chirwere chisingawanzoitiki , chinobata munhu mumwe chete pavanhu 12,000 kusvika 20,000.
Ndezvipi zviratidzo zveAngelman Syndrome?
Zviratidzo zvechirwere ichi zvinogona kusiyana kubva pamunhu kusvika pamunhu uye nezera. Ngatizviparadzanisei muzvikamu zviviri.
| Zvinhu zvinonyanya kuonekwa | |
|---|---|
| Hunhu | Tsananguro |
| Kunonoka kukura | Kutadza kukambaira, kugara, kana kufamba zvinoenderana nezera. |
| Kuremara kwepfungwa | Matambudziko ekudzidza nekunzwisisa. |
| Kuoma kutaura | Vamwe vana vanotaura mazwi mashoma chete, vamwe vangasakwanisa kutaura zvachose. |
| Kuomerwa nekufamba | Kufamba kusina kugadzikana, kusingadzoreki uye kufamba kwakatambanudzwa. |
| Matambudziko ekuenzanisa (Ataxia) | Kuomerwa nekuchengetedza kuenzana kwemuviri uye kubatana. |
| Kubatwa nepfari | Kazhinji inogona kutanga pakati pemakore maviri nematatu. |
| Zvimwe zviratidzo zvinogona kuonekwa | |
|---|---|
| Hunhu | Tsananguro |
| Matambudziko ekudya muvana vadiki | Kuoma kusveta kana kumedza chikafu. |
| Matambudziko ekurara | Kumuka nguva dzose, kushaya hope. |
| Scoliosis | Kukotamisa musana parutivi. |
| Matambudziko ekugaya chikafu | Kuzvimba kana kudzoreredza acid yemudumbu mudumbu kupinda mudumbu (GERD) . |
| Matambudziko emaziso | Kufamba kwemaziso kusingadzoreki (nystagmus) , strabismus , uye kunzwa chiedza (photophobia) . |
| Kudzikira kweruvara rweganda (hypopigmentation) | Ganda, bvudzi, uye ruvara rwemaziso zvinova zvakajeka kupfuura zvakajairwa. |
Zvinhu zvakakosha zvinoonekwa pazviso zvevana ava
- Dehenya pfupi uye rakafara `(brachycephaly)`
- Rurimi rukuru `(macroglossia)`
- Musoro mudiki pane wakajairika (microcephaly)
- Prognathia yemumabvi
- Muromo wakafara
- Maburi makuru pakati pemazino
Zviratidzo izvi zvinogona kuwedzera kuoneka sezvaunokura.
Sei Angelman Syndrome ichiitika? Chii chinokonzera?
Fungidzira kuti miviri yedu ine mabhuku emirairo. Tinodaidza majini aya kuti. Majini aya anodzora zvese zviri mumiviri yedu. Angelman Syndrome inokonzerwa nekuchinja kana kukanganisa kuri mujini rinonzi `UBE3A` . Jini iri rinokosha zvikuru mukudzora mashandiro etsinga dzedu.
Kazhinji, tinowana makopi maviri ejini rega rega, rimwe kubva kuna amai vedu nerimwe kubva kuna baba vedu. Munzvimbo zhinji dzemuviri, makopi ese ari maviri anoshanda. Zvisinei, mune dzimwe nzvimbo dzeuropi, kopi yejini `UBE3A` yatinowana kubva kuna amai vedu ndiyo inoshanda.
Kana kopi yejini re'UBE3A' rakatorwa kubva kuna amai ikakuvara kana kurasika, hapana jini re'UBE3A' rinoshanda muzvikamu izvozvo zveuropi. Ichi ndicho chikonzero chikuru chezviratidzo zvine chekuita neAngelman Syndrome.
Chinhu chakakosha ndechekuti chirwere ichi hachiwanzo gara nhaka. Izvi zvinoreva kuti kunyangwe pasina munhu mumhuri ane chirwere ichi, mwana anogona kuchibata nekuda kwekuchinja kwemajini.
Vanachiremba vanoongorora sei chirwere ichi?
Zviratidzo zvechirwere ichi hazviwanzoonekwa pakuzvarwa. Vanachiremba vanowanzoongorora chirwere ichi kana mwana ava nemakore ari pakati pegore rimwe nemana.
Kana chiremba akaona kuti mwana ari kukura zvishoma nezvishoma, zvakaita sekusataura nekukurumidza zvinoenderana nezera rake kana kuti kusatanga kufamba, anogona kunge achifungira. Achanyatsoongorora maitiro emwana nezvimwe zviratidzo.
Kuti zvionekwe kuti chirwere ichi chaongororwa, bvunzo dzemajini dzinodiwa. Miedzo iyi inogona kuona nemazvo kana paine dambudziko mujini re'UBE3A'.
Zvinokwanisika here kuongorora chirwere ichi zvisizvo?
Ehe, dzimwe nguva zvinogona kudaro, nekuti zviratidzo zveAngelman Syndrome zvakafanana nezvimwe zvirwere zvakawanda.
- Dambudziko reAutism spectrum
- Kuora mwoyo kweuropi
- Chirwere chePrader-Willi
Nekuti mamiriro ezvinhu akadai anogona kupindirana, kuongororwa kwemajini kwakakosha kuti pave nechirwere chakarurama.
Ndeipi mishonga yekurapa Angelman Syndrome?
Parizvino hapana mushonga weAngelman Syndrome. Zvisinei, kune nzira dzakawanda dzekurapa dzinogona kubatsira kudzora zviratidzo uye kubatsira mwana kurarama hupenyu huri nani.
- Mishonga yekudzivirira pfari: Isa mishonga yakanyorerwa nachiremba nemazvo.
- Kurapa nekutaura: Kubatsira mwana kutaura zvaanofunga achishandisa mutauro wemasaini, mifananidzo, uye zvishandiso zvekutaurirana.
- Kurapa muviri: Kunobatsira kuvandudza kufamba, kuenzana, uye kubatana kwemuviri.
- Kurapa Kwebasa: Kudzidzisa mwana kuita mabasa ezuva nezuva ari ega uye kuti azvimiririre.
- Zvishandiso zvekubatsira: Kushandisa masimbi anopfekwa kumusana, muzvitsitsinho, kana mutsoka kubatsira pakufamba nekumira.
- Kana uine matambudziko ekurara: Iva netsika dzakanaka dzekurara uye tanga tsika yekurara panguva yakatarwa.
- Kana paine matambudziko ekugaya chikafu: Ipai mushonga wakanyorerwa nachiremba.
Zvinodiwa nemwana wese pakurapwa zvakasiyana. Chiremba wako ndiye achasarudza nzira yakanakisisa yekurapwa zvichienderana nezviratidzo nezvinodiwa nemwana wako.
Ndingaitei kuti nditarisire mwana wangu?
Sevabereki, mune basa guru rekuita.
- Ipai mishonga yakanyorerwa nachiremba nenguva uye muchiyero chakakodzera.
- Iva nechokwadi chekuenda kukiriniki dzinoongorora kukura kwemwana wako.
- Ita kuti mwana wako atore chikamu muzvidzidzo zvekurovedza muviri, zvebasa, uye zvekutaura.
- Iva nechokwadi chekuenda kuna chiremba pane imwe nguva yakatarwa.
Vana vane Angelman Syndrome vangada rubatsiro mumabasa ezuva nezuva muhupenyu hwavo hwese. Chikwata chekurapa chiri kurapa mwana wako chichakupa rutsigiro nemazano aunoda.
Unofanira kuona chiremba rini?
Mwana ane chirwere ichi anofanira kugara achiongororwa nachiremba kuti ave nechokwadi chekuti mishonga yacho iri kushanda nemazvo. Kana ukaona shanduko itsva kana kuti zviratidzo zvemwana wako zvichiwedzera kuipa, zivisa chiremba wako nekukasika.
Chinonyanya kukosha: Kana mwana wako akabatwa nepfari kekutanga, muendese kuchipatara kuEmergency Department (ETU) nekukasika.
Ramangwana revana ava richave rakaita sei?
Vanhu vazhinji vane Angelman Syndrome vane hupenyu hwakajairwa. Izvi zvinoreva kuti havakurumidzi kufa nekuda kwechirwere ichi. Mwana paanokura, pachava nekunonoka kwekufamba, kutaura, uye kukura. Zvisinei, mwana anogona kutamba, kudzidza, uye kushanda nevamwe vana.
Sevanhu vakuru, vamwe vanhu vanogona kurarama vega vachiwana rutsigiro. Vamwe vangangoda kutarisirwa nguva yakazara.
Zvinonzwisisika kunzwa mutoro unorema paunoziva kuti kunyemwerera kwakanaka kwemwana wako chiratidzo chechirwere. Asi yeuka, kunyangwe mushure mekuongororwa uku, mwana wako acharamba aine kunyemwerera kunotapira, kunyemwerera ikoko kunotapira. Chinhu chakakosha ndechekuteerera kukura kwemwana wako uye kupa kurapwa kwakakodzera nenguva, sezvakataurwa nachiremba. Chiremba wako nechikwata chekurapa vachakubatsira nhanho dzese dzenzira. Saka usatya kubvunza mibvunzo uye kudzidza zvakawanda nezvechirwere ichi.
Mharidzo Yekuenda Nayo Kumba
- Chirwere cheAngelman chirwere chisingawanzoitiki chinokonzerwa nemajini. Hachikonzerwi nemhosva yevabereki.
- Zvinhu zvikuru zvinoonekwa pakuita izvi zvinosanganisira kufara nguva dzese, kunyemwerera, kunonoka kukura kwemwana, uye kuoma kutaura.
- Kunyange hazvo pasina mushonga wakakwana wechirwere ichi, nzira dzekurapa nemishonga zvinogona kubatsira kudzora zviratidzo uye kupa mwana hupenyu hwakanaka.
- Nguva yekurarama kwevana ava inowanzo gara yakajairika.
- Kuongororwa kwechirwere nekukurumidza uye kutanga kurapwa uye mabasa ekurapa zvakakosha zvikuru kune ramangwana remwana.
- Gara uchitevera mirairo yachiremba wako uye enda kumakiriniki ese akarongwa.
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