Unofara sei kuona kuwedzera kutsva mumhuri yako? Asi, fungidzira, dai muviri wese wemwana wako wakafukidzwa neganda gobvu, rine makwapa, uye rine makwapa mushure mekuzvarwa? Kuvhunduka nekutya kunonzwa chero mubereki paanoona izvo zvakaoma kutaura. Nhasi tichataura nezvechimwe chirwere chisingawanzoitiki uye chakakomba, Harlequin Ichthyosis. Usatye paunonzwa izvi. Nhasi, nekufambira mberi kwesainzi yezvekurapa, kune nzira dzakawanda dzekugadzirisa chirwere ichi. Ngatidzidzei zvakawanda nezvazvo.
Zvichitaurwa zviri nyore, chii chinonzi Harlequin Ichthyosis?
Harlequin Ichthyosis chirwere cheganda chakanyanya kuipa uye chakakomba chinonzi Ichthyosis . Ichthyosis chirwere chinoitika kana paine dambudziko nekukura nekufa kwemasero eganda redu. Mamwe marudzi eIchthyosis haana kusimba uye anogona kudzorwa nekuchengetedzwa kweganda zvakanaka. Zvisinei, Harlequin Ichthyosis chirwere chinoisa upenyu panjodzi chinoda kurapwa kwakasimba kubva pakuzvarwa.
Ichi chirwere chinokonzerwa nemajini . Izvi zvinoreva kuti chinotorwa kubva kuvabereki kuenda kuvana. Chirwere ichi hachiwanzoitiki zvekuti chinongobata mwana mumwe chete pavana 500,000. Zvisinei, nekurapwa kwazvino uno, vana vanoberekwa nechirwere ichi vava nemukana wekurarama kusvika vakura.
Ndezvipi zviratidzo zvikuru zvechirwere ichi?
Zviratidzo zvechirwere ichi zvinosiyana zvishoma nezera remwana. Zviratidzo zvemwana achangoberekwa nezvemwana akura zvishoma zvakasiyana. Ngatizvitsanangure seizvi kuti tinzwisise zvakajeka.
| Boka rezera | Zviratidzo zvinowanzoonekwa |
|---|---|
| Vacheche vachangoberekwa |
|
| Vana vakuru nevakuru |
Dambudziko iri rinorwadza here?
Ehe, izvi zvinogona kurwadza mwana achangoberekwa. Funga nezvemaburi akadzika ari muganda, kurwadziwa kweganda kuri kubvaruka. Nokudaro, vanachiremba nevanamukoti vari muchikamu chevacheche vanochengeta vana (NICU) vanopa mwana mishonga yekuderedza marwadzo (semuenzaniso, Paracetamol, Ibuprofen). Vanoyera marwadzo nekutarisa kurova kwemoyo wemwana nekuchema kwake, uye vanova nechokwadi chekuti anonzwa akasununguka sezvinobvira .
Sei izvi zvichiitika? Chikonzero chacho ndechei?
Chikonzero chikuru cheizvi ikushanduka kwejini reABCA12 . Ngatinzwisisei izvi zviri nyore.
Funga nezvejini iri reABCA12 se'Delivery Service' rinoendesa zvinhu zvakakosha zvakaita semafuta (lipids) kune chikamu chekunze cheganda redu. Chikamu ichi chemafuta ndicho chinoita kuti ganda redu rirambe rakapfava uye rine hutano. Mumunhu ane Harlequin Ichthyosis, nekuda kwekusakwana kwejini iri, 'Delivery Service' iyoyo haishande nemazvo. Nekuda kweizvozvo, mafuta haasvike kumasero eganda nemazvo, uye masero eganda anoungana pamusoro peumwe neumwe, achiumba chikamu chakakora, chakaoma.
Sezvo ichi chiri chirwere chemajini, kuti mwana awane chirwere ichi, chinofanira kugara nhaka kubva kuna amai nababa.Jini iri risina kunaka rinofanira kugara nhaka. Kana vabereki vese vari ivo vane jini risina kunaka (zvichireva kuti havana zviratidzo, asi vane jini racho), pane mukana we25% (mumwe pavana) wekuti mwana wavo awane chirwere ichi.
Vanachiremba vanoongorora uye vanorapa sei chirwere ichi?
Kazhinji, vanachiremba vanogona kuona chirwere ichi pakuzvarwa nekuda kwechitarisiko chemwana chakasiyana. Zvisinei, kuongororwa kwemajini kunoitwa kuti zvisimbiswe. Kunyangwe panguva yekuzvitakura, vanachiremba vanogona kufungidzira chirwere ichi kana vakaona zviratidzo zvakaita sekuchinja kweganda kana kuvhurika kwemuromo wemwana kakawanda pa ultrasound scans. Kana zvichidikanwa, vanogonawo kuona chirwere ichi nekukurumidza nekuyedzwa kwakakosha (senge amniocentesis) panguva yekuzvitakura.
Nzira dzekurapa
Harlequin Ichthyosis haisi chirwere chinorapika zvachose, asi zviratidzo zvinogona kugadziriswa uye mwana anogona kurarama hupenyu hwakanaka uye hwakareba.
Kurapa kunogona kukamurwa kuita zvikamu zvikuru zviviri:
1. Kurapwa kweChikamu Chekuchengetedza Vana Vachiri Kuberekwa (NICU): Mavhiki mashoma ekutanga ehupenyu hwemwana ndiwo anonyanya kukuvadzwa. Kurapwa kunoitwa panguva iyi ndiko kunoponesa hupenyu hwemwana.
2. Kutarisirwa kwenguva refu kumba: Kutarisirwa kweupenyu hwese mushure mekudzoka kumba kubva kuNICU.
Ngatitarisei kurapwa uku zvakadzama.
| Nzira yekurapa | Tsananguro |
|---|---|
| Kurapa kweNICU ( Neonatal Intensive Care Unit) | |
| Kurapa kweRetinoid | Uyu mushonga unopihwa nemuromo kana kuiswa paganda. Unobatsira kuti ganda rakakora ribviswe nekukurumidza uye ganda riri pasi paro ripore. Ichi chave chiri chikonzero chikuru chekuponesa hupenyu hwevana ava munguva pfupi yapfuura. |
| Kutarisira ganda | Mafuta ekuzora akakosha anoiswa nguva dzose kuti ganda rirambe riine hunyoro. Mafuta anorwisa mabhakitiriya anoiswa kudzivirira utachiona kuti husapinde nepamaburi ari paganda. |
| Nzvimbo ine hunyoro | Hunyoro huri mu incubator umo mwana anochengetwa hwakanyanya. Izvi zvinoderedza kuoma kweganda. |
| Kudya zvinovaka muviri nekuyamwisa | Sezvo asingakwanise kuyamwa mukaka, anopiwa chikafu chinodiwa kuburikidza nechubhu diki inoiswa mudumbu make (chubhu yekudyisa). |
| Kutarisira kwenguva refu kumba | |
| Kugeza kakawanda | Kugeza zuva nezuva kunobatsira kupfavisa ganda uye kubvisa ganda rakafa. |
| Kuisa moisturizer nguva dzose | Unofanira kuisa moisturizer kana chimwe chinhu chakaita sepetroleum jelly mumuviri wako wese kakawanda pazuva. Izvi zvinodzivirira ganda kuti risaome kana kutsemuka. |
| Kusangana nenyanzvi | Zvakakosha kuva nehukama hwepedyo nachiremba weganda . Zvakare, uchafanirwa kuona nyanzvi dzemaziso, nzeve, uye majoini nguva nenguva. |
| Dziviriro kubva pakupisa kwakanyanya | Sezvo usingakwanise kudikitira, muviri unogona kupisa zvakanyanya kana uchipisa. Saka, unofanira kungwarira zuva nekupisa. |
Chinhu chinonyanya kukosha rudo, kutarisirwa, uye simba repfungwa revabereki nemhuri. Rwendo urwu rwakaoma. Saka, zvakakosha zvikuru kutsvaga rutsigiro kubva kuna vanachiremba, vapi vemazano, nedzimwe mhuri dzine vana vakaita seizvi.
Mharidzo Yekuenda Nayo Kumba
- Harlequin Ichthyosis chirwere cheganda chisingawanzoitiki asi chakanyanya kuipa. Hachitapurirani.
- Dambudziko iri rinogona kuisa upenyu hwemwana achangoberekwa panjodzi, saka zvakakosha kuti mwana awane rubatsiro muchikamu chevanorwara zvakanyanya (NICU) kwemavhiki mashoma ekutanga.
- Nekuda kwemishonga yemazuva ano, kunyanya retinoid therapy , huwandu hwevana ava vanorarama hwakawedzera zvakanyanya.
- Ichi chirwere chehupenyu hwese. Zvakakosha kuchengetedza ganda nguva dzose, kupa chikafu chakakodzera, uye kutevedzera mazano evanachiremba vane hunyanzvi.
- Kana vanhu vane chirwere ichi vakatarisirwa zvakanaka, vanogona kurarama hupenyu hurefu, hwakanaka, uye hune chinangwa.
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