Hapana chinorwadza amai kana baba kupfuura kuona mwana wavo achiderera zvishoma nezvishoma pamberi pavo. Mwana aimhanya-mhanya achitamba kamwe kamwe anotanga kudedera nechirwere chakaita sepfari, kana kuona kufunga kwake nekudzidza kwake zvichidzikira zvishoma nezvishoma, zvakaoma kutaura kutya nekuvhunduka kwaunonzwa. Ndiyo chirwere chakanyanya kuoma uye chisingawanzoitiki chatichataura nezvacho nhasi. Chirwere ichi chirwere cheAlpers, kana kuti `(Alpers Disease)`.
Zvichitaurwa zviri nyore, chii chinonzi Alpers Disease?
Chirwere cheAlpers chirwere chisingawanzoitika chinokanganisa mitochondria, inova ndiyo midziyo midiki yemagetsi inopa simba kumasero edu. Funga nezvazvo sekunge kune mabhatiri madiki akawanda mukati mesero rega rega mumuviri wedu, uye mabhatiri iwayo ndiwo anopa masero iwayo simba raanoda kuti ashande. Chinoitika muchirwere cheAlpers ndechekuti mabhatiri aya, mitochondria, haashande nemazvo.
Kurasikirwa nesimba uku kunonyanya kukanganisa nhengo nhatu dzinokosha mumuviri wedu.
1. Uropi: Dementia inogona kuitika nekuda kwekusashanda zvakanaka kweuropi, zvichikonzera kurasikirwa nendangariro.
2. Chiropa: Kushanda kwechiropa kunogona kumira zvachose, zvichiita kuti chiropa chisashande zvakanaka.
3. Tsandanyama: Kubatwa nepfari kunogona kuitika nekuda kwekushanda kwemagetsi muuropi zvisina kujairika.
Zviratidzo zvechirwere ichi zvinowanzoonekwa pazera ripi zvaro, kubva pamwedzi mumwe kusvika pamakore makumi matatu nematanhatu. Zvisinei, chinowanzoonekwa muhudiki, kunyanya pakati pemakore maviri nemana. Dzimwe nguva, chirwere ichi chinogonawo kuonekwa pazera diki, kureva kuti, pakati pemakore gumi nemanomwe nemakumi maviri nemana. Zvinosuwisa kuti ichi chirwere chakakomba zvikuru, uye chinowanzoguma nerufu.
Chirwere ichi chinokonzerwa nekusakwana kwemajini kwatinogara nhaka kubva pakuzvarwa. Izvi zvinoreva kuti kunyangwe mwana aine majini echirwere ichi mumuviri wake pakuzvarwa, zvinogona kutora mavhiki, mwedzi, kana makore kuti zviratidzo zvionekwe.
Chirwere chaAlpert chinozivikanwa nemamwe mazita akati wandei:
- Chirwere cheAlpers-Huttenlocher
- Alpers syndrome
- Progressive infantile poliodystrophy
Ndiani anowana chirwere ichi? Chinowanikwa kakawanda sei?
Munhu wese anogara nhaka jini risina kunaka rinokonzera chirwere cheAlpers anogona kuwana chirwere ichi. Chinokanganisa vanhurume nevanhukadzi zvakaenzana, zvisinei nekuti munhurume kana kuti munhukadzi.
Asi musazvidya mwoyo, ichi chirwere chisingawanzoitiki. Avhareji yekubatwa kwacho inenge munhu mumwe chete pavanhu 100,000 . Zvinonziwo chinowanzoitika kuvanhu vanobva kuNorthern Europe.
Sei chirwere cheAlper chichiitika? Chii chinokonzera?
Chikonzero chikuru cheizvi kuchinja, kana kuti kuchinja, mujini rinonzi `POLG1` mumuviri wedu. Ichi chinhu chinopfuudzwa kubva kuchizvarwa kuenda kune chimwe chizvarwa.
Muchidimbu, zvakaita seizvi. Kuti uve nemwana, unofanira kuwana jini kubva kuna amai vako uye jini kubva kuna baba vako. Kuti uve nechirwere cheAlpers, mwana anofanira kugara nhaka jini re'POLG1' risina kunaka kubva kuna amai nababa. Kunyangwe vabereki vese vari vatakuri vejini risina kunaka, vangasave nezviratidzo. Asi kana mwana akagara nhaka majini ese asina kunaka kubva kwavari vese, mwana achava nechirwere cheAlpers.
Sezvatakambokurukura, kusakwana uku kuri mujini re'POLG1' kunoita kuti DNA iri mumitochondria, nzvimbo dzesimba dzemasero edu, isashande zvakanaka. Ndokusaka nhengo dzinoda simba rakawanda, dzakadai seuropi, chiropa, uye tsandanyama, dzichinyanya kukanganiswa.
Vamwe vaongorori vanotenda kuti kana chimwe chinhu chakaita sehutachiona, chikakanganisa munhu anogara nhaka majini aya asina kunaka, chinogonawo kukonzera chirwere ichi.
Ndezvipi zviratidzo zvechirwere ichi?
Zviratidzo zvechirwere cheAlpert zvinogona kusiyana nekufamba kwenguva. Zvinogona kukamurwa kuva zviratidzo zvepakutanga uye izvo zvinoonekwa sezvo chirwere ichi chichiwedzera.
Chiratidzo chekutanga chinowanzoonekwa ipfari isingashande, iyo inonetsa kudzora nekurapwa.
Ngatinzwisisei zviratidzo izvi zvakajeka kubva patafura iri pazasi.
| Rudzi rwechiratidzo | Zvinhu zvekuona |
|---|---|
| Zviratidzo zvikuru uye zvekutanga |
|
| Zvimwe zviratidzo zvekutanga | |
| Zviratidzo zvinoonekwa kana chirwere chichienderera mberi |
Vanachiremba vanoongorora sei chirwere ichi?
Chiremba wako anowanzo ongorora zviratidzo zvemwana wako nokungwarira, achinyatso tarisa zviratidzo zvikuru zvitatu zvatakambotaura nezvazvo : kutadza kuyeuka, chirwere chechiropa, uye pfari .
Pamusoro pezvo, mimwe miedzo yakati wandei inoitwa kuti isimbise chirwere ichi.
| Bvunzo | Maitiro ekuzviita uye zvekuziva |
|---|---|
| Kuongorora mvura yemusana | Kupomba kwemusana kunosanganisira kuisa tsono diki mumusana wako wepazasi wobvisa mvura shoma yakakomberedza uropi hwako. Mvura iyi inoedzwa kuti ione kana paine kushaya simba mune mamwe makemikari europi. |
| Kuongororwa kweEEG `(Electroencephalography)` | Maplate madiki esimbi (maelectrode) anonamirwa padehenya kuti aone mashandiro emagetsi europi. Kuongororwa kweEEG kunogona kuratidza kuti mashandiro europi hwemunhu ane chirwere cheAlpers anononoka. |
| Kuongororwa kwemajini | Ropa rinotorwa uye kutevedzana kwemajini kunoongororwa. Izvi zvinogona kuona nemazvo kana paine shanduko mujini re'POLG1'. |
| Kuongororwa kweMRI `(Kufungidzira Magadzirirwo Emagetsi)` | Kuongororwa kweuropi neMRI kunogona kuratidza kuwedzera kweganda rebvudzi muuropi hwemunhu ane chirwere cheAlpers. |
Pane mushonga weizvi here?
Zvinosuwisa kuti hapana mushonga wakawanikwa kusvika pari zvino wekurapa chirwere chaAlpert kana kumisa kufambira mberi kwechirwere ichi.
Zvisinei, kune nzira dzakasiyana-siyana dzekurapa dzinogona kubatsira kudzora zviratidzo, kuderedza kusagadzikana, uye kuvandudza hupenyu. Chiremba wako anogona kukurudzira nzira dzakadai se:
- Mishonga yekudzivirira pfari: Mishonga yekudzivirira pfari inopiwa kuderedza kuitika kwepfari.
- Zvekudya zvinovaka muviri uye mvura: Kana uchinetseka nekumedza chikafu, chubhu (percutaneous endoscopic gastrostomy) inogona kuiswa mudumbu mako kuti ipe chikafu nemvura.
- Kudya: Kudya mapuroteni mashoma, kudya zvishoma nguva nenguva.
- Kurapa muviri: Kurovedza muviri nekurapa kuderedza kuomarara kwemhasuru nekusimbisa tsandanyama.
- Kurapa Kwebasa: Kudzidziswa kuita mabasa ezuva nezuva uri wega.
- Kurapa kwekutaura: Kunobatsira pamatambudziko ekutaura.
- Mishonga inonyaradza marwadzo uye inozorodza tsandanyama: Mishonga inopiwa kuderedza marwadzo nekuomarara kwetsandanyama.
- Rutsigiro rwekufema: Kana paine matambudziko ekufema, kufema kunobatsirwa nemichina yakaita se `CPAP` kana `BiPAP®`, kana kana zvichidikanwa, ne `(tracheostomy).`
Zvakare, chiremba wako achaita bvunzo dzakasiyana-siyana dzeropa (dzakadai se `Complete blood count - CBC`, `Liver function test`) mwedzi mishoma yega yega kuti atarise mamiriro emurwere uye kugadzirisa marapirwo sezvinodiwa.
Kana uri kutarisira mwana anorwara...
Tinoziva kuti rwendo urwu rwakaoma zvikuru. Sezvo chirwere ichi chichienderera mberi, iwe nemwana wako mungangoda rutsigiro rwakawedzerwa. Kune nyanzvi dzakawanda nemabasa anogona kukubatsirai parwendo urwu.
- Nyanzvi: Unogona kutsvaga rubatsiro kubva kuna vanachiremba vezvekudya, nyanzvi dzezviropa, nyanzvi dzezvekudya, uye vanachiremba vepfungwa.
- Basa Rekuchengeta Vana Mumba: Kana paine chirwere chakakomba, vashandi vekuchengeta vana vakadzidziswa vanogona kushevedzwa kuti vauye kumba kwenyu kuzotarisira mwana wenyu.
- Mapoka ekuchengetedza varwere vane marwadzo ekurwadziwa: Mapoka aya anobatsira kupa rutsigiro nesimba repfungwa rinodiwa kuti mwana agare akasununguka uye asina marwadzo panguva yekupedzisira yechirwere.
Yeuka kuti hausi wega. Kune mapoka ekutsigira vabereki vane vana vane chirwere cheAlpers nezvimwe zvirwere zvemitochondrial. Munogona kugovana ruzivo, kugovana zviwanikwa, uye kuwana mazano aunoda.
Chirwere cheAlpert chirwere chinoenderera mberi chinowanzoonekwa pakati pemakore mana kusvika gumi mushure mekutanga kwezviratidzo.
Kana uchiziva kuti jini iri riri mumhuri yako uye uri kutarisira mwana, zvakakosha kuti utaure nenyanzvi yezvemajini. Vachakupa mazano nerutsigiro rwaunoda.
Mharidzo Yekuenda Nayo Kumba
- Chirwere cheAlpers chirwere chisingawanzoitiki uye chakakomba chemajini chinokanganisa mitochondria.
- Izvi zvinonyanya kukanganisa uropi, chiropa, uye tsandanyama, uye zviratidzo zvikuru pfari, kutadza kwechiropa, uye kurasikirwa nendangariro.
- Kunyange hazvo pasina mushonga wechirwere ichi, kune nzira dzakawanda dzekurapa dzinobatsira murwere kugadzirisa zviratidzo uye kumunyaradza.
- Sezvo ichi chiri chirwere chemajini, hapana nzira yekuderedza njodzi yacho. Kana paine nhoroondo yemhuri, mazano ezvemajini akakosha zvikuru.
- Kuchengeta mwana anorwara seizvi ibasa rakaoma zvikuru, saka kuwana rutsigiro kubva kuna vanachiremba, masevhisi evanamukoti, uye mapoka ekutsigira kuchakubatsira.
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