Mwana wako mudiki akatanga kutaura kana kufamba zvishoma pane vamwe vana here? Ane dambudziko rekugara panzvimbo imwe chete here? Dzimwe nguva anovheyesa maoko ake nenzira dzisinganzwisisike here, kana kuti haakwanise kukutarisa mumaziso? Zvakajairika kuti iwe semubereki unzwe kutya uye kunetseka paunoona zvinhu zvakadai. Nhasi tiri kutaura nezvechirwere chemajini chinogona kukonzera zviratidzo izvi, asi hachinyanyo kutaurwa nezvacho munharaunda medu. Izvi zvinonzi Fragile X Syndrome. Ngatitaurei nezvazvo zviri nyore, nenzira inogona kunzwisiswa nemunhu wese.
Chii chinonzi Fragile X Syndrome, muchidimbu?
Zvichitaurwa zviri nyore, ichi chirwere chemajini . Kureva kuti, hachisi chinhu chinoitika nekuda kwekutadza kwemunhu chero upi zvake kana kushaya hanya. Chinhu chinoberekwa mwana nacho. Chirwere ichi chinogona kukanganisa kudzidza kwemwana, maitiro ake, chitarisiko chake, uye dzimwe nguva hutano hwake.
Chinhu chakakosha kurangarira pano ndechekuti vakomana vanowanzo kukanganiswa zvakanyanya nechirwere ichi kupfuura vasikana. Tichakurukura chikonzero cheizvi gare gare. Vana vane chirwere ichi vanogona kusangana nematambudziko ekudzidza uye kusagadzikana kwepfungwa. Zvisinei, tinogona kubatsira vana ava kukudziridza kugona kwavo kwakazara kuburikidza nekurapwa kwakakodzera, dzidzo yakakosha, uye kurapwa .
Ndezvipi zviratidzo zvinoratidzwa nemwana mumamiriro ezvinhu aya?
Mwana ane Fragile X anogona kuratidza zviratidzo zvakasiyana-siyana. Vamwe vana vanogona kuratidza zviratidzo izvi zvishoma, nepo vamwe vachibatwa zvakanyanya. Ngatitarisei tafura iyi kuti tinzwisise zviratidzo izvi zvakajeka.
| Rudzi rwehunhu | Zvinhu zvekuona |
|---|---|
| Matambudziko ane chekuita nekukura nekudzidza |
|
| Matambudziko ekuzvibata uye emanzwiro | |
| Hunhu hwechitarisiko chemuviri |
Chinhu chakakosha ndechekuti havasi vana vese vane hunhu uhwu hwese. Uye kungoti mwana ane hunhu humwe kana huviri hwehunhu uhwu hazvirevi kuti ane Fragile X. Unofanira kuona chiremba kuti uwane chirwere ichi nemazvo.
Chii chiri kubatana pakati peFragile X, Autism neADHD?
Iyi ipfungwa yakakoshawo zvikuru. Vana vakawanda vane Fragile X vanogonawo kunge vaine zvirwere zvakaita se autism kana ADHD (Attention Deficit Hyperactivity Disorder).
- Vana vanosvika 40% vane Fragile X vanogonawo kuva ne autism .
- Uye vanhu vanosvika 80% vanogona kunge vaine ADHD kana ADD (attention deficit hyperactivity disorder).
Kana mwana aine Fragile X uye autism, anowanzova nepfari, matambudziko ekurara, uye matambudziko ehunhu.
Chirwere ichi chinoitika sei? Chinogarwa nhaka here?
Ehe, izvi zvinokonzerwa nekuchinja kwemajini kunogarwa nhaka kubva kuchizvarwa kuenda kune chimwe. Ngatinzwisisei izvi zviri nyore.
Pane jini rinonzi `FMR1` paX chromosome mumuviri wedu. Basa guru rejini iri nderekugadzira puroteni yakakosha (FMR protein) inobatsira masero etsinga muuropi hwedu kutaurirana zvakanaka. Puroteni iyi inokosha pakukura kwakanaka kweuropi.
Mumwana ane Fragile X, kuchinja kwejini rekuti 'FMR1' kunokonzera kugadzirwa kushoma kana kusavapo kwepuroteni iyi inokosha. Izvi zvinokanganisa kukura kweuropi nekushanda kwayo.
Sei vakomana vachinyanya kukanganiswa?
Fungidzira, mwana wechikadzi ane ma chromosome maviri eX (XX). Saka kunyangwe paine chikanganiso mujini re'FMR1` pane imwe X chromosome, imwe X chromosome ine hutano inowanzo gadzirisa chikanganiso chacho. Nokudaro, vana vechikadzi vanoratidza zviratidzo zvishoma kana kuti zvishoma.
Asi mwana wechirume ane chromosome imwe chete yeX nechromosome imwe yeY (XY). Saka, kana paine chikanganiso mujini re'FMR1` pane iyo chromosome imwe chete yeX, hapana imwe chromosome yeX inotsiva izvozvo. Ndosaka zviratidzo zvechirwere zvakanyanya muvana vechirume.
Kana amai vaine jini iri risina kunaka, mumwe wevana vavo (angave murume kana mukadzi) ane mukana we50% wekurigara nhaka. Kana baba vane jini iri, vanogona kuripfuudza kuvana vavo vechikadzi chete.
Ungaziva sei chirwere ichi?
Dambudziko iri rinogona kuonekwa chete neruzivo rwechokwadi kuburikidza nekuongororwa kwemajini. Izvi zvinosanganisira kuongororwa kweropa kuri nyore. Sampuro yeropa iyi inoshandiswa kutarisa shanduko mujini re 'FMR1'.
Kunyangwe panguva yekuzvitakura, bvunzo dzinogona kuitwa kuti zvionekwe kana mwana ane chirwere ichi.
- Amniocentesis: Kutora mvura shoma yeamniotic kubva mudumbu raamai woiedza.
- Kuongororwa kweChorionic Villus (CVS): Sample diki yemasero inotorwa kubva muplacenta yoedzwa.
Usati wasarudza nezvebvunzo idzi, zvakakosha zvikuru kukurukura zvakanakira nezvakaipira nachiremba wako .
Chii chatingaita kuti tibatsire mwana?
Nekuti ichi chirwere chinokonzerwa nemajini, hapana "mashiripiti" anogona kuchirapa zvachose. Asi pane zvakawanda zvatinogona kuita kuti tigadzirise zviratidzo zvemwana, timubatsire kudzidza, uye kugadzira nzira yehupenyu hunobudirira. Chinhu chakakosha pano kupindira nekukurumidza sezvinobvira (kupindira nekukurumidza).
| Nzira dzinobatsira | Tsananguro |
|---|---|
| Kurapa |
|
| Dzidzo yakakosha | Kushanda nechikoro kugadzira chirongwa chedzidzo chakakosha chinoenderana nekugona kwemwana kudzidza. |
| Mishonga | |
| Nzvimbo inotsigira vamwe |
Ramangwana revana ava richave rakaita sei?
Iri ndiro dambudziko guru kuvabereki. Fragile X haisi chirwere chinoisa upenyu panjodzi. Nguva yekurarama kwemunhu ane chirwere ichi yakafanana neyemunhu ane hutano hwakanaka.
Nerutsigiro nekudzidziswa kwakakodzera, vanhu vazhinji vane chirwere ichi vanogona kurarama hupenyu hunobudirira uye hunofadza. Vamwe vangada rutsigiro rwakati kusvika vakura. Asi vazhinji vanokwanisa kuenda kuchikoro, kuverenga mabhuku, kudzidza zvinhu zvitsva, kushanda, uye kuita zvinhu vega. Chinhu chinonyanya kukosha kuziva hunyanzvi hwemwana uye kumutsigira zvinoenderana nazvo.
Mharidzo Yekuenda Nayo Kumba
- Fragile X Syndrome haisi mhosva yemumwe munhu, idambudziko remajini rinowanikwa kubva pakuzvarwa.
- Zviratidzo zvinogona kukanganisa vakomana zvakanyanya kupfuura vasikana.
- Kana ukaona mwana wako achinonoka kukura, matambudziko ekutaura, matambudziko ekudzidza, kana matambudziko ekuzvibata, taura nachiremba nezvazvo.
- Kunyange hazvo chirwere ichi chisingarapiki zvachose, zviratidzo zvacho zvinogona kurapwa zvakanaka nekurapwa nemishonga.
- Kuziva chirwere ichi nekukurumidza uye kupa mwana rutsigiro rwakakodzera kunobatsira zvikuru mukuvabatsira kuti vabudirire mune ramangwana.
- Kana muine kusava nechokwadi nezvemwana wenyu, chinhu chakanakisisa chekuita ndechekubvunza chiremba wevana kana chiremba wemhuri kuti akupei mazano.











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