Wakambonzwa nezvechirwere chePelisseus-Merzbacher here, kana kuti PMD muchidimbu? Ungave wakaona kuti mwana wako ane kunonoka kukura, kunetseka kufamba, kana zvimwe zviratidzo zvisingawanzoitiki, uye ungave uchinetseka. Ichi chirwere chisingawanzoitiki. Izvi zvinoreva kuti hachisi chinhu chinowanikwa nevanhu vazhinji. Asi zvakakosha kuziva nezvazvo, kunyanya kana mumwe munhu mumhuri yako akambosangana nematambudziko aya.
Chii chinonzi Pelisseus-Merzbacher disease (PMD)? Ngatinzwisise zviri nyore!
Zvichitaurwa zviri nyore, chirwere chePelizaeus-Merzbacher (PMD) chirwere chisingawanzoitiki chinowanzova chemajini , zvichireva kuti chinogona kupfuudzwa kubva kuchizvarwa kuenda kune chimwe, icho chinokanganisa uropi hwako nemusana (tsinga huru inomhanya nemusana wako). Chinonyanya kukonzera matambudziko ekufamba, akadai sekufamba, kumhanya, nekusvetuka, uye kushanda kwetsandanyama.
Funga nezvazvo sekuti tsinga dziri mumuviri wedu dzakafanana newaya dzemagetsi. Waya idzi ndidzo dzinofamba mashoko anobva kuuropi hwedu mumuviri wedu wese. MuPMD, chifukidziro chekudzivirira chakakomberedza tsinga idzodzo dzinonzi myelin hachikure zvakakwana. Myelin yakaita sepurasitiki iri pawaya yemagetsi. Ndiyo inobvumira mameseji etsinga kufamba nekukurumidza uye nemazvo. Saka kana chifukidziro ichi che myelin chikadzikira, pane matambudziko nekutapurirana kwemashoko etsinga.
Vamwe vanhu vane PMD vanogonawo kunonoka kukura, zvichireva kuti vanogona kunonoka kudzidza, kutaura, kana kufamba, zvichienderana nezera ravo. PMD chirwere chinoramba chichienderera mberi . Izvi zvinoreva kuti zviratidzo zvinogona kuwedzera nekufamba kwenguva.
Chirwere ichi chinokanganisa sei miviri yedu? (Chii chinonzi leukodystrophy?)
PMD chirwere chemajini chiri muboka rezvirwere zvinonzi leukodystrophies . Zvirwere izvi zvinokanganisa chinhu chichena chetsinga dzedu. Chinhu chichena ichi ndipo panowanikwa tsinga dzakaputirwa nemyelin. Saka muPMD, muviri wedu haugadzi myelin yakakwana, saka chinhu chichena ichi chinokuvadzwa. Ndokusaka mashoko anobva kuuropi achienda kune mumwe muviri asingafambe zvakanaka.
Fungidzira, kana munhu akatakura meseji akasatevera nzira chaiyo, meseji yacho inogona kuvharirwa munzira, kana kuguma yava panzvimbo isiriyo, handiti? Ndizvo zvinoitika kuhurongwa hwedu hwetsinga kana myelin yakarasika.
Ndiani anonyanya kurwara nePMD?
PMD inonyanya kubata vakomana nevarume . Izvi zvinodaro nekuti chirwere chemajini chinokonzerwa neX . Izvi zvinoreva kuti mutation inokonzera chirwere ichi iri paX chromosome. Sezvamunoziva, vakadzi vane maX chromosome maviri, nepo varume vaine X chromosome imwe chete neY chromosome imwe chete.
Saka, kunyangwe mukadzi aine gene iyi pa chromosome imwe chete yeX, zviratidzo zvinogona kunge zvisina kusimba zvakanyanya nekuda kweimwe chromosome yeX ine hutano. Chirwere ichi chingasatomboitika zvachose. Asi kana murume aine gene iyi pa chromosome yake yega yeX, njodzi yekubata chirwere ichi yakakura.
Ndeapi marudzi makuru echirwere chePelissaeus-Merzbacher?
Kune mhando mbiri huru dzechirwere chePelisseus-Merzbacher:
1. Chirwere cheClassic Pelizaeus-Merzbacher
Rudzi urwu ndirwo rwakajairika . Zviratidzo zvinowanzotanga mukati megore rekutanga rehupenyu hwemwana . PMD yekare inonyanya kukonzera matambudziko emhasuru nekufamba. Semuenzaniso, mwana anogona kunge akaremara, anononoka kufamba, kana kunetseka kuchengetedza kuenzana.
Mano epfungwa evanhu vane iyi PMD yekare, ndiko kuti, kugona kudzidza nekurangarira, anowanzo kukura zvakanaka kusvika pakukura. Asi ipapo kukura ikoko kunogona kumira. Mushure mekuyaruka, panogona kuva nekuderera zvishoma nezvishoma kwemano epfungwa.
2. Chirwere chePelizaeus-Merzbacher cheConnatal
Rudzi urwu haruwanzoitiki uye rwakanyanya kuoma . Murudzi urwu, zviratidzo zvakaita sematambudziko ekufamba-famba, kunonoka kukura, matambudziko ekudya, uye pfari zvinogona kuonekwa muhucheche, mukati memwedzi mishomanana yekuzvarwa.
Vana vane chirwere chePMD havawanzo dzidza kufamba . Uyewo, vazhinji vanonetseka nekutaura. Zvisinei, vanokwanisa kunzwisisa zviri kutaurwa nevamwe. Iyi inyaya inosuwisa zvikuru.
Chirwere ichi chinonzi PMD chakajairika zvakadii?
Sezvambotaurwa, chirwere chePelizaeus-Merzbacher chirwere chisingawanzoitiki . Sekureva kwenyanzvi munyika yakaita seUnited States, munhu mumwe chete pavarume 200,000 ane chirwere ichi. Izvi zvishoma pakati pevakadzi. Kunyangwe zvakaoma kuwana nhamba dzakarurama dzeizvi muSri Lanka, chinoonekwa sechirwere chisingawanzoitiki pasi rose.
Ndezvipi zviratidzo zvePMD?
Zviratidzo zvechirwere chePelisseus-Merzbacher zvinogona kusiyana kubva pamunhu kuenda kune mumwe, asi pane zvimwe zviratidzo zvakajairika:
- Matambudziko ekuenzanisa: Kusakwanisa kuchengetedza chiyero chakakodzera pakufamba kana kumira.
- Kunonoka kukura: Kunonoka kutaura, kufamba, uye kutamba zvichienderana nezera.
- Matambudziko ekudya: Kuomerwa nekusveta kana kumedza chikafu. Izvi zvinogonawo kukonzera kudzikira kwehuremu.
- Stridor: Ruzha rukuru rusingawanzoitiki kana uchifema.
- Kufamba-famba kwemaziso kusingatarisirwi (nystagmus): Kufamba-famba kwemaziso nekukurumidza, kusingadzoreki kana kukwira nekudzika.
- Kudedera kwemuviri kusingatarisirwi kana kuzununguka (dystonia): Kusunga tsandanyama kusingadzoreki kana kuzununguka kwenhengo dzemuviri.
- Kurema kushoma: Kutadza kuwedzera uremu zvinoenderana nezera.
- Kushaya simba kwetsandanyama (hypotonia): Kunzwa kushaya simba, kushaya simba kwetsandanyama.
Kana mwana wako aine chimwe chezviratidzo izvi kana kupfuura, zvakakosha kuti utsvage rubatsiro rwechiremba nekukasika .
Chii chinokonzera PMD?
Chirwere chePelisseus-Merzbacher chinowanzo kukonzerwa nekuchinja kwemajini ePLP1 . Kuchinja uku kunogona kugarwa nhaka kubva kumubereki mumwe chete kana vese.
Zvisinei, muvanhu vanosvika 20% vane PMD, hapana kuwanikwa kwekuchinja kwemajini ePLP1. Vamwe vavo vanogona kunge vaine kuchinja kwemajini eGJC2 . Vamwe vanogona kunge vaine PMD pasina chikonzero chakajeka. Aya ndiwo matambudziko ekurapa.
PMD inoonekwa sei?
Chiremba wemwana wenyu anogona kufungidzira kuti ane PMD zvichienderana nezviratidzo zvake. Vanogona kuraira bvunzo dzinoverengeka kuti vasimbise fungidziro yacho:
- Kuongororwa kwemifananidzo: Panyaya idzi, MRI scan ndiyo inonyanya kukosha. Izvi zvinogona kushandiswa kuona kana paine kushomeka kwe myelin muuropi hwemwana nemumusana. Zvakafanana nekutora mufananidzo.
- Kuongororwa kwemajini: Kuongororwa uku, kunosanganisira kutora ropa, kunogona kuona kana paine shanduko yemajini inokonzera PMD. Iyi ndiyo nzira chete yekusimbisa chirwere ichi.
Ndeipi mishonga yekurapa PMD?
Zvinosuwisa kuti hapana mushonga wechirwere chePelisseau-Merzbacher parizvino . Zvisinei, izvozvo hazvirevi kuti hapana chatinogona kuita. Chinangwa chikuru chekurapa ndechekuvandudza hupenyu hwemurwere uye kudzora zviratidzo .
Kune nzira dzakasiyana siyana dzekurapa dzinogona kushandiswa pakuita izvi:
- Mishonga: Mishonga inogona kupihwa kuderedza kugwinha kwetsandanyama nepfari.
- Kurapa nemuviri kana kuti occupational therapy: Izvi zvinobatsira kuvandudza kuenzana kwemwana, simba rake, uye kudzora mafambiro ake. Zvikuru sei, zvinomudzidzisa kufamba, kutamba, uye kuita zvinhu ari ega.
- Kurapa Maziso: Kufamba kwemaziso kusingatarisirwi kwambotaurwa (nystagmus) kunogona kurapwa ne magirazi kana, mune dzimwe nguva, kuvhiyiwa.
- Kupa Mazano: Mupi wezano weHutano hwepfungwa ane rezenisiZvakakosha kuwana mazano kubva kuna chiremba. Mazano aya achakubatsira kugadzirisa kushushikana nekuzvidya mwoyo kunokonzerwa nekuva nechirwere chemajini chakadai, uye achakubatsirawo kutarisana nacho zvakanaka. Izvi zvakakosha zvikuru kumwana nevabereki.
Chii chinonzi fungidziro yePMD?
Kufanotaura kuti chirwere chePMD chichakubata kusvika papi uye kuti uchararama kwenguva yakareba sei, zvinoenderana nekuoma kwezviratidzo zvako . Vanhu vane zviratidzo zvakakomba vane mukana wekuva nechirwere chakanyanya kuoma uye kurarama kwenguva pfupi.
Zvisinei, vamwe vanhu vanogona kunge vasina zviratidzo zvakakomba kudaro. Vanogona kurarama hupenyu hwakajairika uye vasina simba guru pamabasa avo ezuva nezuva. Chiremba wako kana mukoti anogona kukubatsira kunzwisisa kuti PMD ingakanganisa sei iwe kana mwana wako. Usambofa wakarasa tariro.
Pane nzira yekudzivirira PMD here?
Zvinosuwisa kuti hapana nzira yekudzivirira chirwere chePelisseus-Merzbacher nekuti chirwere ichi chinokonzerwa nemajini.
Zvisinei, kana uine PMD, kana kuti uchifunga kuti ungave uri mutakuri wechirwere ichi (ndiko kuti, kana mumwe munhu mumhuri yako aine chirwere ichi), ungangoda kufunga nezvekuongorora majini .
Kuongororwa kwemajini kunogona kuona kana uine kushanduka kwemajini kunokonzera PMD. Unogona kutaura nenyanzvi yezvemajini kuti unzwisise zvabuda muongororo uye kuti uwane njodzi dziripo kuti vana vako vagare nhaka chirwere ichi. Izvi zvinogona kubatsira zvikuru pakuronga remangwana.
Mibvunzo yekubvunza chiremba wako
Kana iwe kana mwana wako aine chirwere chePelisseus-Merzbacher, kana kuti kana uchifungidzira kuti chine chirwere ichi, unogona kubvunza chiremba wako mibvunzo iyi:
- Chii chingangove chikonzero chikuru chekuti ini/mwana wangu tiite chirwere chePelisseus-Merzbacher?
- Ndezvipi zviedzo zvinoshandiswa kuongorora chirwere chePelisseus-Merzbacher?
- Ndeapi marapirwo echirwere chePelissaeus-Merzbacher? Ndeapi marapirwo akanakira mwana/ini?
- Mikana yekuti vana vangu vagare nhaka yechirwere chePelisseus-Merzbacher kubva kwandiri ndeyei?
Pamusoro pemibvunzo iyi, taura nachiremba wako nezvechero chauri kufunga, chero kutya kana kusava nechokwadi kwaunako. Usachengete chero chinhu chakavharirwa mupfungwa dzako.
Chekupedzisira, chinhu chakakosha kurangarira (Mharidzo Yekuenda Kumba)
Zvakajairika kunzwa kushamisika uye kusuruvara paunoziva kuti mwana wako ane chirwere chePeliseus-Merzbacher. Zvinoitika kune wese munhu. Yeuka, hausi wega .
Kurapwa kwePMD kunosiyana zvichienderana nerudzi rwechirwere uye kuoma kwezviratidzo. Vamwe vanhu vane PMD vane zviratidzo zvishoma, saka kugona kwavo kana hupenyu hwavo hazvikanganisike zvakanyanya.
Shanda nachiremba wako kuti mugadzire hurongwa hwekurapa hunoshanda kwauri nemhuri yako.Neruzivo rwakakodzera, rutsigiro, uye rudo, unogona kutarisana nedambudziko iri. Edza kufunga zvakanaka nguva dzose.
👩🏽⚕️ Mibvunzo yekuwedzera (Mibvunzo Inowanzo bvunzwa)
💬 Chii chinonzi Ectopic Pregnancy?
Kazhinji, kuti mwana (zai rakasangana nembeu) akure, anofanira kuiswa mu 'chibereko'. Zvisinei, kana zai rabuda muchibereko, harisvike muchibereko, asi rinonamira mu 'fallopian tube' (kana ovary) robva rakura ipapo. Ichi chirwere chinouraya zvikuru!
💬 Mwana ari kukura ari mukati mechubhu anogona sei kuisa hupenyu hwaamai panjodzi?
Tubhu reFallopian harigone kukura kusvika pahukuru hunodiwa kuti ritsigire mwana. Mumazuva akati wandei, chibereko chinokura, uye tubhu rinoputika (tubhu rinoputika). Izvi zvinogona kukonzera kubuda ropa mukati medumbu zvakanyanya, uye amai vanogona kufa mukati memaminitsi.
💬 Unowana sei pamuviri wakadai? Haugone kuponesa mwana here?
Mumhando iyi yekuzvitakura, amai vanotanga varwadziwa zvakanyanya, mudumbu repazasi, kunyanya parutivi rumwe, uye mavanga. Zvinosuwisa kuti pamuviri panoitika muchubhu nenzira iyi haugone kuponeswa (zvisingagoneki mune zvesainzi). Saka, pamuviri unofanirwa kubviswa nekukasika, kungave kuburikidza nekuvhiyiwa kana mishonga (Methotrexate), kuponesa hupenyu hwaamai.
Chirwere chePelisseus -Merzbacher, PMD, zvirwere zvemajini, myelin, tsinga dzemuviri, vana, kunonoka kukura kwemuviri
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