Mashoko haagone kutsanangura mufaro unonzwa amai kana baba pavanoona mwana achangoberekwa. Asi dzimwe nguva, zvakajairika kunzwa kutya kukuru uye kuzvidya mwoyo kana ukaona kuti chimiro chemusoro wemwana chinoshamisa zvishoma. Nhasi tichataura nezvechirwere chisingawanzoitiki chinokuyeuchidza kutya kwakadaro, asi chinogona kudzorwa kana ukachinzwisisa zvakanaka. Izvi zvinonzi Pfeiffer Syndrome. Usavhunduke paunonzwa zita iri. Ngatitaure nezvazvo zviri nyore, nhanho nenhanho.
Chii chinonzi Pfeiffer Syndrome?
Zvichitaurwa zviri nyore, chirwere chePfeiffer chirwere chisingawanzoitiki chinoitika pakuzvarwa chinokanganisa kukura kwemusoro wemwana nemapfupa echiso.
Kuti tinzwisise izvi, ngatitangei tatarisa kuti dehenya redu rinoumbwa sei. Kana mwana aberekwa, pamusoro pemusoro wake hapasi pepfupa rimwe chete. Iro muunganidzwa wezvidimbu zvemapfupa, kana kuti maplate. Kune majoini akakosha (sutures) pakati pemaplate aya emapfupa. Izvi zviripo kuti dehenya rikure, kana kuti rikure, sezvo uropi huchikura. Kazhinji, maplate aya emapfupa anobatana uye anova akasimba kana musoro wakura zvakakwana.
Zvisinei, mumwana ane chirwere chePfeiffer, mapundu ari mudehenya anosangana pamwe chete nekukurumidza, uropi husati hwanyatsokura. Funga nezvawo semuti uri muhari diki, uye painokura, midzi inonamira muhari. Nekuti uropi hune nzvimbo shoma yekukura, chimiro chedehenya nechiso zvinochinja zvisingawanzoitiki.
Ichokwadi kuti izvi zvinotyisa kunzwa. Asi chakakosha ndechekuti kana chirwere ichi chaonekwa, kurapwa kunogona kutanga. Sezvo kuchibata mwana wese zvakasiyana, kurapwa kunobva pazviratidzo zvemwana.
Ndeapi marudzi ePfeiffer syndrome?
Chirwere chePfeiffer chakakamurwa kuita mhando nhatu huru. Kunyange hazvo mhando idzi dzese dzichikanganisa chitarisiko chemwana, mhando yechipiri neyechitatu ndiyo yakanyanya kuipa. Dzinogona kukonzera kunonoka kukura kwepfungwa, matambudziko ekudzidza, uye mamwe matambudziko akakomba anosanganisira uropi, kufamba, uye tsinga.
| Rudzi rwechirwere | Tsananguro uye hunhu |
|---|---|
| Rudzi 1 Rudzi rwekare |
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| Rudzi rwechipiri |
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| Rudzi rwechitatu |
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Chii chinokonzera chirwere chePfeiffer?
Dambudziko iri rinokonzerwa nekuchinja kwemajini kunodzora kukura nekufa kwemasero mumuviri wedu.
Dzimwe nguva izvi zvinogona kugara nhaka kubva kuvabereki kuenda kumwana. Asi kazhinji, vabereki havana chirwere ichi. Izvi zvinoreva kuti chirwere ichi chinokonzerwa nekuchinja kutsva kunoitika zvisina tsarukano (zvisingatarisirwi) panguva yekukura kwemajini emwana. Saka, semubereki, usazvipa mhosva nezveizvi.
Kuchinja kwemajini uku kunokonzera shanduko munzira iyo mamwe mapuroteni anogadzirwa uye anoshanda nayo panguva yekuzvitakura. Nekuda kweizvozvo, mapuroteni iwayo anotumira chiratidzo chisina kunaka kumapfupa edehenya remwana kuti "abatane nekukurumidza." Izvi zvinoisa kumanikidzwa pauropi uye zvinoita kuti dehenya richinje chimiro. Dzimwe nguva, mapfupa ari muminwe nezvigunwe anogonawo kusangana nekukurumidza.
Ndezvipi zviratidzo zvikuru?
Zviratidzo zvinosiyana kubva pamucheche kuenda kumucheche uye zvichienderana nerudzi rwechirwere ichi. Zviratidzo izvi zvinonyanya kuonekwa mumusoro nekumeso, muminwe, mumapfundo, nedzimwe nhengo dzemuviri.
Musoro nechiso
- Mhino yakafara, yakati sandara ine muromo wakadzika pasi
- Maziso ari kure uye akabudikira
- Musoro mupfupi kubva kumberi kuenda kumashure
- Huma refu kwazvo
- Kuonekwa kwakanyura pakati pechiso
- Shaya yepamusoro diki kwazvo uye nekudaro mazino akazara uye akazara
Zvigunwe nezvigunwe
- Zvigunwe zvipfupi
- Zvigunwe zvikuru (zvemaoko netsoka) zvakafara kupfuura zvakajairwa uye zvakakotama kubva kune zvimwe zvigunwe
- Pamwe minwe/zvigunwe zvakarukwa
Mamwe matambudziko
- Kurasikirwa nekunzwa: Vana vanopfuura 50% vane kurasikirwa nekunzwa.
- Matambudziko emazino: Matambudziko ekugadzirisa mazino neshaya.
- Matambudziko ekudya: Kunyanya muhudiki.
- Matambudziko ekufema: Matambudziko akadai sekushaya hope, izvo zvinoita kuti kufema kumire kwechinguva panguva yekurara.
- Matambudziko ekuona: Maziso akabuda anogona kukonzera kuoma uye kutadza kuvhara maziso zvachose.
- Kunonoka kukura uye kudzidza (kunyanya mumhando 2 ne3).
Nzira yekuongorora chirwere ichi sei?
Chiremba wako anogona kuona chirwere ichi panguva yekuzvitakura kuburikidza ne ultrasound kana MRI scan. Mushure mekunge mwana azvarwa, chiremba anogona kuona kana chirwere chacho chiripo nekutarisa ganda remusoro remwana nezvigunwe zvikuru panguva yekuongororwa kwemuviri.
Kuti usimbise kana iri chirwere chePfeiffer kana chimwe chirwere, chiremba wako anogona kukurudzira mimwe miedzo yakawanda.
- X-ray kana CT scan: Ona kuti mapfupa edehenya akanyatsorongeka sei.
- Kuongororwa kwemajini: Tora ropa kana sampu yemate kuti uone kana kushanduka kwemajini kunokonzera izvi kuripo.
Ndezvipi zviri kurapwa?
Kurapwa kunoitwa mwana kunoenderana nerudzi rwechirwere uye zviratidzo zvavainazvo. Izvi zvinoda rutsigiro rwechikwata chikuru chenyanzvi, kusanganisira vanachiremba, vanachiremba vekuvhiya, vanachiremba vekutaura, uye vanachiremba vemuviri . Kuvhiya kunoita basa guru mukurapa.
Kuvhiyiwa kwedehenya
Vana vazhinji vanovhiyiwa kuti vagadzirise chimiro chedehenya ravo vasati vasvitsa mwedzi gumi nemisere . Izvi zvine zvinangwa zviviri zvikuru:
1. Kuderedza kumanikidzwa kweuropi.
2. Kupa pfungwa nzvimbo yadzinoda kuti dzikure zvakasununguka.
Mushure mekuvhiyiwa uku, ngowani yakakosha ichapfekwa kubatsira dehenya kupora kuti rive nechimiro chakakodzera.Inopihwa kuti ipfekwe. Ungangoda kuvhiyiwa kaviri kana kana kwakadaro muhupenyu hwako.
Kuvhiyiwa kwepakati
Vamwe vana vanoda kuvhiyiwa kuti vagadzirise matambudziko eshaya uye mapfupa ari pakati pechiso aendeswe mberi. Izvi zvinowanzoitwa kana mwana ava nemakore matanhatu zvichikwira.
Kurapa kwezvinetso zvekufema
Vamwe vana vanonetseka nekufema nekuda kwekusashanda zvakanaka kwemhepo inofambisa mweya.
- Uchakumbirwa kupfeka mask yakakosha inonzi CPAP (Continuous Positive Airway Pressure) paunenge wakarara.
- Matoni kana adenoids anobviswa nekuvhiyiwa.
- Muzviitiko zvakakomba, kuvhiyiwa kunonzi tracheostomy kunoitwa, uko kunosanganisira kugadzira buri diki mumutsipa uye kuisa chubhu zvakananga mupaipi yemhepo kuti munhu akwanise kufema.
Mamwe marapirwo
Pamusoro peizvi, zvichienderana nezvinodiwa nemwana,
- Kurapa mazino ematambudziko emazino
- Kuvhiyiwa kwezvinetso zvemunwe
- Zvinobatsira kunzwa kana kuvhiyiwa kwezvinetso zvekunzwa
- Kurapa matambudziko ekuona
- Kurapa kwekutaura kuti uvandudze hunyanzvi hwekutaura nemutauro
- Zvinhu zvakaita sekurovedza muviri zvinodiwa kuti muviri ushande zvakanaka.
Ko tarisiro yekurarama yakaita sei?
Iyi inyaya inonetsa zvikuru.
- Vana vane chirwere cheType 1 Pfeiffer vanogona kurapwa zvakanaka. Vane hupenyu hwakajairika. Vanogona kudzidza zvakanaka, kutamba zvakanaka, uye kurarama sevanhu vakuru vakazvimiririra.
- Mhando dzechipiri nedzechitatu dzakaoma kunzwisisa. Vana ava vanosangana nematambudziko akawanda ekufamba, kufema, uye kushanda kwepfungwa. Matambudziko ekufema uye etsinga anogona kupfupisa hupenyu hwavo. Zvisinei, nekurapwa nekutsigirwa nguva dzose, hupenyu hwavo hunogona kuvandudzwa.
Mharidzo Yekuenda Nayo Kumba
- Pfeiffer Syndrome chirwere chisingawanzoitiki chinokanganisa chimiro chedehenya rechiso chemwana.
- Kune mhando nhatu huru dzechirwere ichi, rudzi rwekutanga rwuri rwakanyanya kusimba uye rwunonyanya kuonekwa.
- Zvakakosha kuziva chirwere ichi nekukurumidza uye kuchirapa pasi pekutarisirwa kwechikwata chevanachiremba vane hunyanzvi. Zvakakosha zvikuru kubvumira uropi kukura kuburikidza nekuvhiyiwa.
- Vana vane Type 1 vanogona kurarama hupenyu hwakajairika kana vakarapwa zvakanaka.
- Kana mwana wako aine chirwere ichi, usatya kutaura pachena nachiremba wako wosarudza nzira yakanakisisa yekurapa. Hausi wega, uye kune vanhu vakawanda vanogona kukubatsira.
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