Ungave wakaona mwana akagwinya, achimhanya-mhanya achitamba, achinetseka kufamba kana kutaura zvishoma nezvishoma, kana maitiro ake achichinja zvishoma nezvishoma. Semubereki, pavaifamba zvakanaka pakutanga, uye vozonzwa sekunge hunyanzvi hwemwana wavo huri kudzikira nekufamba kwenguva, zvakaoma kutaura kutya nekuzvidya mwoyo kwaunonzwa. Chikonzero cheizvi chingave chirwere chisingawanzoitiki chatisina kumbonzwa nezvacho. Nhasi tiri kutaura nezveboka rezvirwere zvakadaro. Ndiyo leukodystrophy .
Zvichitaurwa zviri nyore, chii chinonzi leukodystrophy?
Leukodystrophy haisi chirwere chimwe chete. Iboka rezvirwere zvinokanganisa sisitimu yedu yetsinga (kureva, uropi nemusana). Vanachiremba vari kugara vachiwana zvinhu zvitsva nezvazvo. Parizvino, mhando dzinosvika makumi mashanu nembiri dzechirwere ichi dzakaonekwa.
Mazhinji emhando idzi dzeleukodystrophies ane majini . Kureva kuti, anotorwa kubva kuvabereki kuenda kuvana. Dzimwe nguva mwana anogona kuratidza zviratidzo mushure mekuzvarwa. Zvisinei, vamwe vana vanogona kuzvarwa vaine chirwere ichi, asi pakutanga, vanogona kutaridzika sevari mutano.
Chinhu chakakosha ndechekuti zvirwere izvi zvinofambira mberi, zvichireva kuti mwana ane hutano hwakanaka pakutanga anogona kutanga kuratidza zviratidzo gare gare.
Ndezvipi zviratidzo zvechirwere ichi?
Mhando dzese idzi dze leukodystrophy dzine chinhu chimwe chete chakafanana: dzinokuvadza myelin sheath iri muuropi.
Fungidzira waya yemagetsi mumba medu. Kune sheath yepurasitiki yakakomberedza waya yemhangura mairi, handiti? Ndizvo zvinoita kuti magetsi aende chaipo paanofanira kuenda, pasina kubuda mvura. Saizvozvowo, tsinga dzedu dzine sheath chena ine mafuta inonzi 'myelin' yakakomberedza. Iyi sheath yemyelin ine basa rekutakura mameseji etsinga nemazvo uye nekukurumidza kuenda kuuropi uye kubva kuuropi kuenda kunhengo dzemuviri. Kana iyi sheath yemyelin ikakuvara, sisitimu yedu yetsinga haigone kushanda zvakanaka.
Rudzi rumwe nerumwe rwe leukodystrophy runokuvadza sheath iyi ye myelin nenzira dzakasiyana, saka matambudziko angasangana nevana anogona kusiyana zvikuru.
| Nzvimbo yezviratidzo | Matambudziko akajairika akaonekwa |
|---|---|
| Kuenzana kwemuviri nekufamba | Kutadza kufamba zvakanaka, kudonha kakawanda, kutadza kudzora muviri. |
| Maitiro nekudzidza | Kuremara pakudzidza, kurasikirwa nendangariro, kuchinja maitiro. |
| Kukura nekukura | Kukundikana kuratidza kukura kwakakodzera zera (semuenzaniso, kunonoka kutaura, kufamba). |
| Kushanda kwemanzwiro | Kudzikira zvishoma nezvishoma kwekunzwa, kuona, uye kugona kutaura. |
| Mamwe matambudziko ane chekuita netsinga | Kutadza kufema zvakanaka, matambudziko ekugadzirisa weti, pfari. |
Semuenzaniso, muchirwere chinonzi Canavan disease , tsandanyama dzemutsipa dzemwana dzinooma, asi maoko nemakumbo zvinoramba zvakasimba. Vanogonawo kurasikirwa nekuona uye kuva nepfari.
Dzimwe nguva zviratidzo zvinoonekwa pakuzvarwa. Asi murudzi rwakaita seRefsum Disease , zviratidzo zvinoonekwa pazera remakore makumi maviri. Dzimwe nguva zvinogona kuonekwa pazera remakore makumi mashanu. Zvinhu zvakaita sekushaya simba kwe retina, kurasikirwa nekunzwa, uye kurasikirwa nekunhuhwirira zvinogona kuonekwa mune izvi.
Nekuti zviratidzo zvakasiyana, zvinogona kuoma kuziva chirwere ichi.
Sei chirwere chakadai chichiitika? Chii chinokonzera?
Sezvatakambokurukura, zvirwere izvi zvakawanda zvinokonzerwa nemajini . Izvi zvinoreva kuti zvinokonzerwa nekusakwana kwemajini anobva kuna amai kana baba, kana vese vari vaviri.
Asi mamwe marudzi haagari nhaka. Anokonzerwa nekuchinja kwemajini matsva. Semuenzaniso, chirwere cheAlexander chinoita sechisina kugara nhaka. Izvi zvinoreva kuti kunyangwe kana mubereki wese asina jini rakakanganisika, mwana anogona kuchigadzira.
Saka, kunyange zvazvo mwana mumwe chete mumhuri imwe chete angava ne leukodystrophy, vamwe vana vangasava nayo.
Kana mumwe wevana venyu aine leukodystrophy uye muri kutarisira mumwe mwana, zvakakosha kuti muwane mazano ezvemajini . Izvi zvichakubatsirai kunzwisisa izvi uye njodzi yekubereka mwana naye mune ramangwana. Taurai nachiremba wenyu nezvenyaya iyi.
Vanachiremba vanoongorora sei chirwere ichi nemazvo?
Kuziva chirwere ichi inzira yakaoma nekuti zviratidzo zvacho zvakasiyana-siyana. Saka, vanachiremba vanofanirwa kuita mhando dzakasiyana dzebvunzo.
| Rudzi rwekuyedza | Zvichitaurwa zviri nyore... |
|---|---|
| Kuongororwa kweropa neweti | Kuziva kusarongeka kwemakemikari mumuviri. |
| Kuongororwa kweMRI | Kuwana mifananidzo yakajeka uye yakadzama yeuropi nehurongwa hwetsinga kuti utarise kukuvara kwe myelin sheath. |
| Kuongororwa kweCT | Imwe bvunzo yekuona shanduko muchimiro cheuropi. |
| Kuongororwa kwemajini | Kuziva chirwere chacho chinokonzera zvikanganiso zvemajini. |
| Miedzo yepfungwa nepfungwa | Kuedza kufunga kwemwana, kudzidza, uye kugona kwake kurangarira. |
Pane mushonga weizvi here?
Kutaura zvazviri, hapasati pave nemushonga chaiwo wemhando zhinji dze leukodystrophy. Zvisinei, izvi hazvirevi kuti hapana chinogona kuitwa.
Panguva yekurapwa, vanachiremba vanonyanya kutarisa pakudzora zviratidzo uye kuchengetedza hupenyu hwemwana zvakanakisisa sezvinobvira. Kurapwa kunoenderana nerudzi rweleukodystrophy yemwana.
Mishonga inowanzo shandiswa ndeiyi:
- Kupa mishonga yekudzora zviratidzo (semuenzaniso, kudzora pfari).
- Kurapa kwakakosha, kwakadai sekurovedza muviri, kurapwa kwebasa, uye kurapwa kwekutaura , kunogona kubatsira kuvandudza kufamba kwemwana, kugona kwake kuita mabasa ezuva nezuva, uye kutaura.
- Vamwe vana vangangoda rubatsiro rwakawedzerwa pakudzidza nekudya zvinovaka muviri .
Mune zvimwe zviitiko, kuisirwa bota remapfupa kunogona kunonotsa kana kumisa kufambira mberi kwechirwere. Masayendisiti ari kutsvagawo nzira itsva dzekurapa, dzakadai sekurapa majini .
Nezvose izvi, chinhu chakakosha ndechekugara uchitaurirana nachiremba wako uye kutevedzera mirairo yake.
Mharidzo Yekuenda Nayo Kumba
- Leukodystrophy iboka rezvirwere zvisingawanzoitiki zvemajini zvinokanganisa tsinga dzinofukidza tsinga (myelin sheath) muuropi.
- Kunyangwe mwana pakutanga aine hutano hwakanaka, zviratidzo zvinogona kuoneka zvishoma nezvishoma nekufamba kwenguva uye mamiriro acho anogona kuipa.
- Kana ukaona mwana wako achitadza kufamba, kutaura, kuona, kana maitiro ake zvisina kutsanangurwa, enda kuna chiremba nekukurumidza.
- Kunyange hazvo pasina mushonga chaiwo wemhando zhinji dzechirwere ichi, kune mishonga yekurapa zviratidzo uye kuvandudza hupenyu hwemwana.
- Taura pachena nachiremba wako nezvekutya, kusava nechokwadi, kana mibvunzo yaunayo.
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