Mwana wako anogara achirwara here? Zvingave SCID (Severe Combined Immunodeficiency)! Ngatikurukurei nezvazvo!

Mwana wako mudiki anogara achirwara here? Chirwere chimwe chinova nani pane chimwe here? Dzimwe nguva izvi zvakajairika, asi zvinogonawo kukonzerwa nechirwere chisingawanzoitiki asi chakakomba zvikuru. Ndizvo zvinoreva SCID (Severe Combined Immunodeficiency) . Ngatitaurei nezvazvo zvakadzama nhasi, handiti? Musazvidya mwoyo, zvakakosha kuziva izvi.

Chii chinonzi SCID (Severe Combined Immunodeficiency)? Ngatizvinzwisise zviri nyore.

Zvichitaurwa zviri nyore, SCID chirwere chisingawanzoitiki, chisingawanzoitiki chemajini chinobata vanhu vashoma. Chinokonzera kuti masoja emuviri wedu, ayo anorwisa zvirwere, asashande zvakanaka. Chinogona kuva chirwere chakakomba zvikuru.

Tinoti izvi 'kushaikwa kwemuviri kunokosha'. Mamwe mabhuku anotiwo 'kukanganisa kwemuviri kusingaperi'. Kureva kuti, chinhu chiripo kubva pazuva rekuzvarwa uye chinogona kupfuudzwa nezvizvarwa. Kuchinja kwakasiyana-siyana kwemajini kunogona kukonzera chirwere ichi cheSCID.

Fungidzira, kunyangwe munyika yakaita seAmerica, kana vana vanosvika 58,000 vakazvarwa gore rega rega, mumwe chete wavo ndiye achawana chirwere ichi chinonzi SCID (Severe Combined Immunodeficiency). Unogona kufungidzira kuti izvozvo hazviwanzoitiki.

Chii chinoitika mukati memwana ane SCID?

Kuti tinzwisise izvi, tinofanira kutanga tatarisa mashandiro anoita masoja emuviri wedu, iro uto rinorwisa zvirwere.

Fungidzira, kana mwana ari mudumbu raamai vake, uto remasero anorwisa zvirwere rinotanga kuumbwa mumuviri wake. Huru hweuto iri ibhonzo . Kune masero akakosha ipapo, atinodaidza kuti ' masero emuviri ' . Aya masero emuviri anogona kugadzira marudzi ese matatu makuru emasero eropa:

• Masero matsvuku eropa : Aya ndiwo anotakura okisijeni mumuviri wese.
• Masero machena eropa : Aya ndiwo masoja ari mumuviri wedu anotidzivirira kubva kuzvirwere.
• Maplatelet : Aya anobatsira kuumba ropa.

Zvino, pakati pemasero machena eropa aya, pane boka rakakosha rinonzi 'lymphocytes' . Aya ndiwo anorwisa zvirwere zvakananga. Kune mhando mbiri huru dzemalymphocytes aya: T-cells neB -cells. Masero aya ese akakosha zvikuru mukurwisa zvirwere.

• Masero eT anoziva 'zvinhu zvinopinda' zvinokonzera zvirwere - zvinhu zvakaita semabhakitiriya nemavhairasi - zvinopinda mumuviri, zvinoarwisa, uye zvinoaparadza.
• Masero eB anogadzira 'antibodies' . Ma antibodies aya akafanana nendangariro. Kana wangorwara, unoyeuka uye wagadzirira kurwisa kana akadzoka.

Izwi rekuti 'Combined' muzita rekuti SCID (Severe Combined Immunodeficiency) rinoreva kuti chirwere ichi chinokanganisa masero eT nemasero eB. Ndosaka chichinzi 'combined' deficiency.

Mwana ane SCID ane ma lymphocytes mashoma kwazvo, kana kuti masero aainawo haashande nemazvo. Saka, nekuti masoja emuviri haashande nemazvo, zvakaoma zvikuru, dzimwe nguva hazvigoneke, kurwisa utachiona—mavhairasi, mabhakitiriya, uye fungi.

Chii chinokonzera SCID?

Kunewo mhando dzakasiyana dzeSCID (Severe Combined Immunodeficiency).

Rudzi rwakajairika runokonzerwa nedambudziko rejini riri paX chromosome . Izvi zvinowanzobata vakomana chete. Nekuti vasikana vane maX chromosome maviri, kunyangwe rimwe riine dambudziko, masoja avo ekudzivirira muviri anogona kuramba achishanda nekuda kweimwe X chromosome ine hutano. Asi vakomana vane X chromosome imwe chete. Saka kana jini iroro risina simba, chirwere chinozokura. Vasikana vanogona kungova 'vatakuri' vechirwere. Izvi zvinoreva kuti kunyangwe vasina chirwere, vana vavo vanogona kutapurira jini racho.

Kune rumwe rudzi rweSCID, runokonzerwa nekushaikwa kweenzyme inodiwa pakugadzirwa kwelymphocytes. Kunze kweizvi, SCID inogonawo kukonzerwa nezvimwe zvikonzero zvakasiyana-siyana zvemajini.

Ndezvipi zviratidzo zveSCID? Zvinoonekwa sei?

Kunyangwe vacheche vane SCID vachiratidzika kunge vane hutano hwakanaka pakuzvarwa , matambudziko anogona kutanga kukura nekufamba kwenguva. Heano mamwe ezviratidzo zvekuchenjerera:

• Kukundikana kukura zvakanaka, kusawedzera uremu nguva dzose .
• Manyoka asingarapiki .
• Zvirwere zvekufema zvinogara zvichiitika, dzimwe nguva zvakakomba . Izvi zvinoreva kugara wakazadzwa chipfuva uye kukosora.
• Utachiona hwefungus hunokonzera mavanga machena mumuromo nepahuro (thrush yemuromo)Kuuya. Tinodanawo izvi kuti 'Ullogam'.
• Pamusoro pezvo, dzimwe hutachiona hwemabhakitiriya, hwemavhairasi, kana hwefungus dzakaoma kurapa uye dzinogona kuva dzakakomba dzinogona kuitika. Semuenzaniso:
• Utachiona hwenzeve (acute otitis media)
• Utachiona hwe sinus (sinusitis)
• Mapundu paganda
• Fivha yeuropi, meningitis
• Chirwere chemabayo

Fungidzira kuti zvinoomera sei vabereki kana mwana mudiki akaramba achirwara seizvi, uye kana chirwere chimwe chikava nani chisati chabuda chimwe. Saka, kana chimwe chezviratidzo izvi chikaramba chiripo, unofanira kuona chiremba nekukurumidza.

SCID (Severe Combined Immunodeficiency) inoonekwa sei?

Nerombo rakanaka, kuongororwa kweropa kuri nyore, kunonzi 'kuongororwa kwevana vacheche' , kwave kuitwa kuti vaone kana paine zvimwe zvirwere muvana vacheche pavanongozvarwa . Semuenzaniso, 'chirwere chesickle cell' uye 'cystic fibrosis' zvinogona kuonekwa kuburikidza neizvi. Miedzo yakafanana iri kuitwawo muSri Lanka. Mashoko akanaka ndeekuti SCID (Severe Combined Immunodeficiency) inogona kuonekwawo kuburikidza nekuongororwa kwevana vacheche mune dzimwe nyika.

Nenzira iyi , kana chirwere chikaonekwa nekukurumidza, kurapwa kunogona kutanga nekukurumidza. Zvadaro mhedzisiro yacho inova nani zvikuru.

Kana kuongororwa kwemwana achangoberekwa kuchiratidza kuti ane SCID, mwana anowanzo tumirwa kuna chiremba wezvirwere zvemuviri. Chiremba iyeye acharaira kuongororwa kweropa, pamwe nekuongororwa kwemajini .

Kana mumwe munhu mumhuri aine SCID, kana kuti kana paine nhoroondo yemhuri yekusakwana kwemasoja emuviri, vabereki vanogona kuwana mazano ezvemajini . Vanogonawo kuongororwa ropa mwana achangoberekwa . Kana chirwere ichi chikaongororwa nekukurumidza, kurapwa kunotanga nekukurumidza uye mhedzisiro yacho inova nani.

Dzimwe nguva, kana kushanduka kwemajini kunokonzera SCID mumhuri kuchizivikanwa, zvinokwanisika kuyedza mwana chirwere ichi pakuzvarwa . Zvisinei, kune vacheche vasina nhoroondo yemhuri kana vasina kuongororwa kuburikidza nekuongororwa kwevacheche, zvinogona kunonoka kusvika mwedzi mitanhatu chirwere chisati chaonekwa. Panguva iyoyo, zvinenge zvatononoka.

Ndezvipi zvirongwa zvekurapa SCID?

SCID chirwere chevana chinonetsa. Izvi zvinoreva kuti kana chikarapwa nekukurumidza, vana ava vanogona kufa vasati vasvika zuva ravo rekutanga rekuzvarwa. Saka, kurapwa nekukurumidza kwakakosha zvikuru.

Kurapa kunonyanya kushandiswa ndeye 'kuisirwa stem cell'. Izvi ndizvo zvinoitwa nemuviri wemunhu.Izvi zvinonziwo 'kuisirwa kwemapfupa', zvinosanganisira kupa masero emuviri kubva kumunhu ane hutano kuenda kumwana anorwara. Tariro ndeyekuti masero matsva aya achavakazve masoja emuviri emwana.

• Kuisirwa masero ekutanga kunobudirira zvikuru kunogona kuitwa kana masero acho akatorwa kubva kuhama yemukoma kana hanzvadzi.
• Dzimwe nguva, masero evabereki anogonawo kushanda pamwe chete.
• Kana pasina munhu mumhuri akakodzera, vanachiremba vanogonawo kushandisa masero emuviri anobva kune mumwe munhu asina hukama naye.

Vamwe vacheche vane SCID vangadawo chemotherapy vasati vaisirwa.

Chinhu chinonyanya kukosha ndechekuti kuisirwa kwemasero aya kuitwe mukati memwedzi mishoma yekutanga yehupenyu hwemwana, asati awana hutachiona. Ndipo panobva mhedzisiro yacho.

Kurapa majini kwakaratidzawo mhedzisiro yakanaka mukuyedzwa kwekiriniki kwemarudzi akasiyana eSCID. Zvisinei, haisati yashandiswa zvakanyanya munyika dzakawanda pasi rose. Tsvagiridzo yekurapa majini eSCID ichiri kuenderera mberi.

Pakurapa mwana ane SCID, kazhinji pane chikwata chevanachiremba chinoumbwa nenyanzvi dzakasiyana-siyana. Semuenzaniso:

• Chiremba wezvirwere zvevana
• Chiremba wekubvisa maronda emapfupa
• Nyanzvi yezvirwere zvinotapukira zvevana

Vacheche vane SCID vari panjodzi yakakura yekuwana hutachiona hunogona kuurayisa. Nokudaro, vanachiremba vanotanga kuvapa mishonga yekubatsira kudzivirira hutachiona. Semuenzaniso, mishonga inorwisa mabhakitiriya, mishonga inorwisa mabhakitiriya, mishonga inorwisa fungus , uye majekiseni ekudzivirira mabhakitiriya/immunoglobulin . Vamwe vacheche, zvichienderana nekusiyana kwemajini avo, vangatoda kuiswa ma enzyme .

Zvimwe zvinhu zvekuziva nezve SCID

Pamusoro pemishonga nekurapwa, kune dzimwe nzira dzekudzivirira nadzo hutachiona. Rangarira zvinhu izvi paunenge uchichengeta mwana ane SCID:

• Kuti adzivise kupararira kwehutachiona, anofanira kuparadzaniswa nevamwe. Izvi zvinoreva kumupa imba yake yega uye kuve nechokwadi chekuti zvinhu zvaanobata zvakachena.
• Hazvikurudzirwi kupa chero 'jekiseni mhenyu'. Izvi zvinodaro nekuti zvinogona kuva nengozi kupa mwana ane SCID, kunyangwe hutachiona husina simba, sejekiseni. Mienzaniso yeizvi ndeiyi:Jekiseni reRotavirus, jekiseni rehuku/varicella, jekiseni regwirikwiti-mumps-rubella (MMR), jekiseni reporiyo rinonwiwa, jekiseni reBCG, uye jekiseni refuruu mhenyu.
• Chinhu chakakosha ndechekuti hapana munhu anogara mumba imwe chete nemwana anofanira kuwana majekiseni aya ari mupenyu, sezvo anogona kutapurira chirwere ichi kumwana.
• Kana ropa richidikanwa, rinofanira kurapwa zvakananga. Izvi zvinoitirwa kudzivirira matambudziko anogona kuitika nekuda kwekuwedzerwa ropa.
• Ungangoda kurega kuyamwisa kwechinguva kusvika mukaka wako wezamu waongororwa mavhairasi anogona kukonzera hutachiona. Tevedzera mirairo yachiremba wako nokungwarira.

Imi sevabereki mungabatsira sei?

Mwana wako paanenge achiongororwa chirwere cheSCID, uye panguva yekurapwa, pane zvinhu zvakawanda zvaunogona kuita semubereki kuderedza njodzi yekutapukirwa. Heano zvimwe zvacho:

• Deredza huwandu hwevashanyi vanouya kumba. Zvakanaka kuva nevanhu vashoma vanouya kuzoona mwana.
• Dzivisa kuenda nemwana wako kunzvimbo dzine vanhu vakawanda , dzakadai sezvitoro zvikuru nemitambo.
• Usaswededze mwana wako pedyo nemunhu ane dzihwa , fivha, kana kukosora. Kana paine munhu akadaro kumba, muchengete kure nemwana wako.
• Usati wabata mwana, iva nechokwadi chekuti munhu wese ari kutarisira mwana ageza maoko ake zvakanaka. Geza maoko ako nesipo nemvura inoyerera kwemasekondi makumi maviri.

Ngatifungei nezveramangwana.

Mwana ane SCID angafanira kuvhiyiwa kakawanda uye kugara muchipatara nguva nenguva. Izvi zvinogona kushungurudza mhuri chero ipi zvayo. Asi yeuka kuti hausi wega.

Chikwata chevanachiremba chiripo kuti chikubatsire iwe nemwana wako usati warapwa, panguva yekurapwa, uye mushure mekurapwa. Unogonawo kuwana rubatsiro nekurudziro kubva kumapoka ekutsigira, vashandi vezvemagariro evanhu, mhuri, neshamwari. Panogona kunge paine masangano muSri Lanka anobatsira vana vane chirwere ichi, saka vatarise.

Kuti uwane rumwe ruzivo nerutsigiro online, unogona kushanyira mawebhusaiti epasi rose akadai (aya ari muChirungu):

• Sangano reKushaya Dziviriro yeMhuka
• SCID, Ngirozi dzeHupenyu

Zvinhu zvinonyanya kukosha zvaunogona kuenda nazvo kubva muchinyorwa chino

Zvakanaka, saka, kubva pane zvatataura nezvazvo, izvi ndizvo zvinhu zvakakosha zvaunofanira kurangarira:

• SCID (Severe Combined Immunodeficiency) chirwere chisingawanzoitiki asi chakakomba chemajini chinoita kuti masoja emuviri emwana asashande zvakanaka.
• Kana uine zviratidzo zvakaita sekutapukirwa nezvirwere zvakakomba, kutadza kuwedzera uremu, kana kuti manyoka asingaperi , tsvaga rubatsiro rwechiremba nekukasika.
• Kuongororwa kwevana vacheche dzimwe nguva kunogona kuona SCID nekukurumidza.
• Kuongororwa nekukurumidza uye kurapwa kwakakosha zvikuru. Kurapa kukuru kunoitwa nekuisirwa masero emuviri kana kuti kuisirwa mabhonzo.
• Zvakakosha zvikuru kudzivirira mwana ane SCID kubva kuzvirwere, uye matanho akakosha anofanira kutorwa.
• Hausi wega. Tsvaga rubatsiro kubva kuna vanachiremba, mhuri, uye mapoka ekutsigira.

Ndinovimba ruzivo urwu ruchakubatsira. Ndiri kushuvira mwana wako kuti apore nekukurumidza!

` SCID, Kushomeka Kwakanyanya KwemaImmuno Akasanganiswa, Kushomeka KwemaImmuno, Vana, Zvirwere zveMajini, Kuisirwa Bone Morrow, Kuongorora Vacheche