Mwana wenyu ane zviratidzo izvi here? Ngatikurukurei nezveNoonan Syndrome

Saamai kana baba, pamwe unogara uchinetseka nezvehutano nekukura kwemwana wako. Dzimwe nguva zvakajairika kunzwa kutya zvishoma paunoona shanduko diki muchitarisiko chemwana wako kana matambudziko ekukura kwake. Nhasi tichataura nezvechirwere chakakosha chemajini icho vabereki vakadaro vanofanira kuziva. Icho chirwere chinonzi Noonan Syndrome.

Chii chinonzi Noonan Syndrome?

Zvichitaurwa zviri nyore, Noonan Syndrome chirwere chemajini . Chinokonzerwa nekuchinja kwemajini mumuviri wedu. Chirwere ichi chinogona kukanganisa mwana wako nenzira dzakasiyana. Vamwe vana vanoberekwa vaine chirwere ichi, asi zviratidzo zvacho zvinogona kunge zviri zvishoma . Izvi zvinoreva kuti vanogona kurarama hupenyu hwakajairika vasina matambudziko makuru. Zvisinei, vamwe vana vanogona kunge vaine matambudziko akawanda .

Mumamiriro ezvinhu aya, chiso chemwana chinogona kunge chine zvimwe zvinhu zvakasiyana . Semuenzaniso, huma refu, maziso akakura, nzeve dzakadzika, uye mutsipa mupfupi. Zvakare, vana vazhinji vane Noonan Syndrome vapfupi zvichienderana nezera ravo, zvichireva kuti vanogona kutaridzika sevapfupi . Matambudziko emaziso, tsandanyama dzisina kusimba, uye chirwere chemwoyo chekuzvarwa nacho zvakajairikawo.

Asi nyaya yacho ndeyekuti, hapana mushonga weNoonan Syndrome. Asi musazvidya mwoyo! Chiremba wenyu anogona kukupai gwara ramunoda kuti mwana wenyu agare aine hutano hwakanaka sezvinobvira. Vanogonawo kushanda nemi kudzivirira kana kuona matambudziko angangomuka nekuda kwechirwere ichi. Ipapo mwana wenyu anogona kurarama hupenyu hwakazara, hune simba .

Ndiani anowana chirwere ichi? Chinowanzoitika sei?

Noonan Syndrome chirwere chinogona kuitika pakuzvarwa kwemunhu wese . Hatigone kufanotaura kuti ndiani achachibata uye ndiani asingachibate. Zvisinei, zvichienderana nehuwandu hwevanhu, vanhu vanosvika 50% vane Noonan Syndrome vanogara nhaka chirwere ichi kubva kune mumwe wevabereki vavo. Kazhinji, munhu ane Noonan Syndrome ane mukana we50% wekupa mwana wake chirwere ichi.

Noonan Syndrome chirwere chemajini chinowanzoitika . Kureva kuti, chinowanzoitika zvishoma pane zvimwe zvirwere zvemajini zvisingawanzoitiki. Zvinonzi pakati pemunhu mumwe chete pavanhu chiuru nezviuru zviviri nemazana mashanu vanogona kuva nechirwere ichi.

Chii chinokonzera Noonan Syndrome?

Dambudziko iri rinonyanya kukonzerwa nekushaikwa kwema enzymes anobatsira kuti nhengo dzemuviri wedu dzikure uye dzikure.Izvi zvinokonzerwa nekuchinja kwemajini mamwe (kuchinja kwemasero). Zvikurukuru, mapuroteni anogadzirwa nemajini aya akachinja anoramba achishanda kwenguva yakareba kupfuura yaanofanira kuita. Izvi zvinodzivirira masero kukura nekupatsanurana zvakanaka.

Kune nzira mbiri idzo Noonan Syndrome inogona kuitika nadzo:

• Yakagara nhaka: Mwana anogara nhaka iyi kubva kune mumwe wevabereki.
• Kuchinja kwemuviri kamwe chete: Chirwere chinoitika nekuda kwekuchinja kwemajini, pasina munhu mumhuri akambova nechirwere ichi.

Kuongororwa kwemajini kuri kuitwa pari zvino kunogona kuona kusarongeka kwemajini muvanhu vanosvika 80% vane Noonan Syndrome. Zvisinei, vaongorori havasati vaziva chikonzero chaicho chechirwere ichi muvanhu vasara.

Pane zvimwe zvirwere zvakafanana neNoonan Syndrome here?

Ehe, Noonan Syndrome chirwere chiri muboka rezvirwere zvine chekuita nazvo zvinonzi RASopathies . Zvirwere izvi zvose zvinokonzerwa nekusarongeka kwakafanana nekukura nekukura kwemasero. Saka, zviratidzo zvazvo zvakafanana zvikuru.

Zvimwe zvirwere zviri muchikamu che'RASopathies' ndeizvi:

• Chirwere chemwoyo neganda
• Costello syndrome
• Neurofibromatosis rudzi 1 (NF1)
• Chirwere cheLegius
• Noonan syndrome ine lentigines dzakawanda (yaimbozivikanwa seLEOPARD syndrome)
• Turner syndrome

Ndezvipi zviratidzo zveNoonan Syndrome?

Zviratidzo zveNoonan Syndrome zvinogona kusiyana kubva pamunhu kusvika pamunhu. Vamwe vanhu vane zviratidzo zvishoma, nepo vamwe vane zviratidzo zvakakomba, zvinogona kutyisidzira hupenyu. Zvinoenderana nekuti ndeipi nhengo yemuviri wemwana inobatwa nayo. Zviratidzo zvakawanda zvinotanga mwana asati aberekwa, kana kuti zvinoonekwa mwana asati asvitsa makore gumi nerimwe ekuberekwa .

Zvimiro zvechiso zvinoonekwa

Zvimiro zvechiso zvinoonekwa muvana vane Noonan Syndrome zvinogona kupera zvishoma nezvishoma mwana paanosvika pakukura . Kureva kuti, zvinogona kusanyanya kuoneka sezvazvaive pakutanga. Izvi zvinogona kusanganisira:

• Kuva nehuma refu .
• Kuva negomba rakadzika pakati pemuromo wepamusoro.
• Maziso akarembera (ptosis).
• Mhino yakati sandara uye muromo wakakora.
• Matinji ear lobes ari pasi pezvakajairika.
• Maziso ebhuruu rakareruka kana kuti girini.
• Strabismus chirwere chinowanzoonekwa apo daro riri pakati pemaziso rinowedzera uye maziso anotsveyama pasi, dzimwe nguva achitarisana.

Humwe hunhu hwemuviri

Pamusoro pezvimiro zvechiso, kune zvimwe zvinhu zvakawanda zvakafanana:

• Kuzvimba kweminwe kana pasi petsoka.
• Nzara dzine chimiro kana ruvara rusina kujairika.
• Mutsipa mupfupi uye bvudzi rakatetepa riri kumashure kwemutsipa, pamwe nerukoko kumativi emutsipa.
• Kupfupika kwehurefu (kupfupika kwehurefu zvichienderana nezera).
• Chipfuva chakanyura (pectus excavatum) kana pfupa rechipfuva rakabudikira (pectus carinatum).

Chirwere chemwoyo

Vana vazhinji vane Noonan Syndrome vanogona kunge vaine chirwere chemwoyo chekuzvarwa nacho . Vamwe vana vangada kurapwa chirwere ichi chemwoyo nekukasika . Vamwe vangasaratidza zviratidzo kusvika vakura. Zvirwere zvemwoyo zvinonyanya kuzivikanwa ndeizvi:

• Kukanganisika kweropa mu septal yeatrial.
• Hypertrophic cardiomyopathy. (Kurwara kwemwoyo nemwoyo).
• Stenosis yetsinga dzemapapu.

Mamwe matambudziko anogona kuitika

Pamusoro peizvi, Noonan Syndrome inogona kukonzera mamwe matambudziko akawanda:

• Kutadza kufema zvakanaka, semuenzaniso, nekuda kwekupfava kwegurokuro (laryngomalacia).
• Lymphedema (kuunganidzwa kwemvura yelymph mumaoko kana makumbo).
• Kunonoka kukura kwemwana .
• Kubuda ropa kupfuura zvakajairika kana kupwanyika zviri nyore.
• Matambudziko ekudya muhucheche.
• Machende asina kudzika muvakomana. Kana akasarapwa, izvi zvinogona kukanganisa matambudziko ekubereka.
• Kurwara neScoliosis.
• Matambudziko ekuona kana kutadza kunzwa (kutadza kunzwa).
• Zvirema zvekuzvarwa nazvo zvinokonzerwa neitsvo.

Ndezvipi zvimwe zvinetso zvinobatanidzwa neNoonan Syndrome?

Vana vazhinji vane Noonan Syndrome vanokura zvishoma nezvishoma pane zvakajairwa pavanosvika pazera rekuyaruka. Zvisinei, vanogona kuzvarwa vakareba zvakanaka. Vanenge 25% vane dambudziko rekudzidza. Vashoma vavo vanogonawo kunge vaine dambudziko repfungwa. Pakati pe10% ne15% yevana vane Noonan Syndrome vangada dzidzo yepamusoro. Dambudziko iri rinogonawo kukonzera kunonoka kukura, matambudziko ehunhu, kana matambudziko ekutaura.

Vamwe vana vane Noonan Syndrome vanowana juvenile myelomonocytic leukemia (JMML) , rudzi rusingawanzoitiki rweleukemia runoitika muhudiki.Njodzi yekubatwa nekenza yemazamu kana dzimwe kenza dzevana inogona kuwedzera zvishoma. Zvisinei, njodzi yese inofungidzirwa kuti inenge 4% panosvika makore makumi maviri. Saka, yeuka, njodzi shoma kwazvo .

Noonan Syndrome inoonekwa sei?

Chiremba wenyu anogona kufungidzira kuti ane chirwere cheNoonan Syndrome mushure mekuongororwa kwemuviri uye kuongororwa kwezviratidzo zvemwana wenyu. Kuti asimbise kuongororwa kwechirwere uye kubvisa zvimwe zvirwere, chiremba wenyu anogona kukurudzira bvunzo dzemajini .

Mimwe miedzo yakati wandei inogona kuitwa pakuita izvi:

• Kuongororwa kweropa rakazara (CBC).
• X-ray yechipfuva.
• Kuongororwa kweCT.
• Echocardiogram inzira yekuongorora mashandiro emoyo.
• Kuongororwa kweEKG (Electrocardiogram (EKG)).
• Kuongororwa kwe ultrasound.

Pane mushonga weNoonan Syndrome here?

Kwete, hapana mushonga weNoonan Syndrome. Asi musazvidya moyo! Kune mishonga inoshanda inogona kukubatsirai nemwana wenyu kugadzirisa zviratidzo.

Noonan Syndrome inorapwa sei?

Chikwata chevanachiremba chemwana wenyu chichagadzira hurongwa hwekurapa Noonan Syndrome zvichienderana nezviratidzo zvemwana wenyu uye kuoma kwazvo. Mwana wenyu anogona kurapwa seizvi:

• Zvishandiso zvekubatsira: zvakaita semagirazi kana zvinhu zvinobatsira kunzwa.
• Kurapa kwemaitiro kana kutaura .
• Rutsigiro rwedzidzo kune vane matambudziko ekudzidza.
• Mishonga yechirwere chemwoyo chemwana, matambudziko ekubuda ropa, kana kukura zvishoma nezvishoma .
• Kurapa kwehomoni yekukura.
• Mishonga yekuwedzera yakaita se compression therapy, iyo inopa zororo kune zvirwere zvakaita se lymphedema.

Mune zvimwe zviitiko, chiremba wako anogona kukurudzira kuvhiyiwa . Yeuka kuti, kuonekwa kwechirwere nekukurumidza kwakakosha kuti kurapwa kubudirire uye kurapwa kutevererwe.

Ndiani anogona kubatanidzwa muchikwata chekurapa mwana wangu cheNoonan Syndrome?

Kuwedzera kuna chiremba wevana vako, timu yezvekurapa inotarisira hutano hwemwana wako inogona kusanganisira nyanzvi dzakadai se:

• Nyanzvi yekurapa mitsipa yeropa.
• Chiremba ane hunyanzvi muhurongwa hwetsinga (uropi, musana, uye tsinga) (Nyanzvi yepfungwa).
• Chiremba wezvirwere zveganda.
• Chiremba wemaziso.
• Nyanzvi yezvemajini.
• Chiremba wemwoyo.
• Chiremba weEndocrinologist.
• Chiremba wezvirwere zvetsinga.
• Chiremba weganda (nyanzvi yeganda, bvudzi, uye nzara).

Chikwata chenyu chekuchengeta varwere chichakurudzira kurapwa kwakakodzera mwana wenyu. Vachatarisawo mamiriro emwana wenyu uye vogadzirisa chero chinhu chinodiwa pakurapa kana mishonga, zvichienderana nemamiriro emwana uye chero migumisiro yakaipa.

Pane chandingaita here kuderedza njodzi yemwana wangu yeNoonan Syndrome?

Kwete. Hapana chaunogona kuita kuderedza njodzi yekuti mwana wako ave neNoonan Syndrome. Inokonzerwa nekuchinja kwemajini . Zvisinei, kana mumwe munhu mumhuri yako aine Noonan Syndrome, unogona kutaura nachiremba wako nezvekuongororwa kwemajini emwana asati aberekwa, izvo zvinogona kuitwa panguva yekuzvitakura .

Remangwana revanhu vane Noonan Syndrome rakaita sei?

Vanhu vazhinji vane Noonan Syndrome vanorarama hupenyu hune hutano uye hwakazvimiririra.

Chikwata chekuchengeta mwana wenyu chichashanda nemi kugadzirisa zviratidzo zvemwana wenyu uye kudzivirira matambudziko. Saka, zvakakosha kuti murambe muine tariro.

Ndeipi nguva yaunofanira kutsvaga rubatsiro rwechiremba nezveNoonan Syndrome?

Kana Noonan Syndrome ichikonzera chirwere chemwoyo chakakomba chekuzvarwa nacho , kuvhiyiwa uye kuongororwa nguva dzose kungave kwakakosha kuti mwana wako agare aine hutano uye akachengeteka. Chiremba wako anogona kukurukura newe nzira dzekurapa nekukurumidza uye kwenguva refu.

Zvakajairika kunzwa kutya kana mwana achangoberekwa kana mwana ari kukura akaonekwa kuti ane chirwere. Zvisinei, vana vazhinji vanoonekwa vaine chirwere cheNoonan Syndrome vane zviratidzo zvishoma . Uye vanoenderera mberi nekurarama hupenyu hwakazara, hune simba. Taura nachiremba wako nezvekurapa kunoshanda kana sarudzo dzekuchengeta dzinoenderana nezvinodiwa nemwana wako. Kurapwa nekukurumidza kunogona kubatsira kuderedza kuzvidya mwoyo kwako uye kubatsira mwana wako kuwana mhedzisiro yakanaka yehutano.

Ngatiyeukei zvinhu zvinonyanya kukosha (Mharidzo Yekuenda Kumba)

Zvakanaka, ngatidzokororei pfungwa dzakakosha kubva pane zvatataura nezvazvo:

• Noonan Syndrome chirwere chinokonzerwa nemajini .
• Zviratidzo zveizvi zvinosiyana , zvimwe zvishoma, zvimwe zvakanyanya kuoma.
• Unogona kuona zvinhu zvakaita sezvimiro zvechiso zvakasiyana, hupfupi, uye chirwere chemwoyo.
• Kunyange hazvo pasina mushonga wakakwana, kune mishonga inoshanda inogona kudzora zviratidzo .
• Zvakakosha zvikuru kuongorora chirwere ichi uye kutanga kurapwa nekukurumidza .
• Chikwata chevanachiremba vane hunyanzvi chichabatsira mwana wako.
• Vana vazhinji vane Noonan Syndrome vanorarama hupenyu hunofadza uye hune simba .

Saka, kana mwana wako aine zviratidzo izvi, usavhunduka, enda kuna chiremba nekukurumidza uye uwane mazano. Vachakupa rubatsiro rwese rwaunoda.

Noonan syndrome, zvirwere zvemajini, chirwere chemwoyo chekuzvarwa nacho, kunonoka kukura, chimiro chechiso, hutano hwevana, kuongororwa kwemajini