Cabanga ngesikhumba somntwana wakho omncane siphuka futhi silimale kalula yizingubo azigqokayo, noma ngabe siklwebheka kancane ndawana thize. Lesi isimo esibuhlungu kakhulu nesidabukisayo ukusizwa, akunjalo? Ngeshwa, ezinye izingane nabantu abadala babhekene nalolu hlobo lwesimo. Namuhla sizokhuluma ngesimo esibizwa ngokuthi 'i-Epidermolysis Bullosa' (EB), esibangela ukuba isikhumba esinjalo sibe bucayi futhi sibe bucayi kakhulu. Abanye abantu babiza laba bantwana ngothando ngokuthi "izinsana zebhabhathane" ngoba isikhumba sabo sibucayi njengephiko lebhabhathane.
Kalula nje, yini i-Epidermolysis Bullosa (EB)?
I-Epidermolysis Bullosa (EB) akuyona isifo esisodwa. Yisimo sofuzo, okusho ukuthi sidluliselwa ezizukulwaneni ngezizukulwane. Isikhumba somuntu onalesi sifo sibuthakathaka kakhulu. Ngisho nokucindezela okuncane noma ukungqubuzana okungeke kumlimaze umuntu ojwayelekile, njengokuhlikihla izingubo noma umuntu othinta isikhumba sakhe, ngezinye izikhathi kungabangela amabhamuza namanxeba.
Isikhumba sethu sakhiwe ngezendlalelo eziningana eziyinhloko. Lezi zendlalelo zihlanganiswa ngamaprotheni. Uma sikhuluma iqiniso, iphrotheni ebizwa ngokuthi i-collagen ibaluleke kakhulu kulokhu. Ifana 'nensini' enamathela ezingqimbeni zesikhumba. Ngenxa yephutha lofuzo kubantu abanesifo se-EB, le phrotheni ayikhiqizwa kahle. Ngakho-ke, ngenxa yokuthi leyo 'nsini' ibuthakathaka, izendlalelo zesikhumba ziyahlukana kalula, zigcwalise ngoketshezi futhi zakhe amabhamuza. La mabhamuza angakheka hhayi ezindaweni ezifana nezandla, izinyawo, izindololwane, namadolo kuphela, kodwa nangaphakathi emlonyeni, emphinjeni, nangaphakathi komzimba.
Yiziphi izinhlobo eziyinhloko zesifo se-EB?
I-EB ihlukaniswe ngezinhlobo ezine eziyinhloko, kuye ngokuthi ungqimba lwesikhumba lukuphi lapho kwakheka khona amabhamuza. Lokhu kubaluleke kakhulu ukuthi odokotela banqume ukuthi bazokwelashwa kanjani.
| Uhlobo lwe-EB | Isendlalelo sesikhumba esithintekile | Incazelo elula |
|---|---|---|
| I-EB Simplex (i-EBS) | Ingqimba ephezulu yesikhumba (i-epidermis) | Lolu uhlobo oluvame kakhulu. Ngokuvamile alubi lubi kakhulu. Uma amabhamuza esepholile, kuncane kakhulu amanxeba. |
| I-Junctional EB (JEB) | Lapho kuhlangana khona izendlalelo ezimbili zesikhumba | Lokhu akuvamile. Amabhamuza angakheka emlonyeni nasemigudwini yomoya. Angahluka kusukela emaphakathi kuya emabi kakhulu. |
| I-Dystrophic EB (DEB) | Ungqimba olungaphansi kwesikhumba (i-dermis) | Kulolu hlobo, amabhamuza angashiya izibazi njengoba ephola. Kungase kube nezinto ezifana neminwe enamathelana. |
| I-Kindler Syndrome | Kunoma yiluphi ungqimba lwesikhumba | Lolu uhlobo olungavamile kakhulu. Ama-blister angakheka ezingqimbeni ezahlukene zesikhumba. |
Yiziphi izimpawu ezingaba khona zesifo se-EB?
Izimpawu zingahluka kuye ngohlobo lwesifo se-EB. Izimpawu zivame ukuqala ukubonakala ebuntwaneni.
- Uphawu oluyinhloko ukuqubuka kwesikhumba, ikakhulukazi ezandleni, ezinyaweni, ezindololwaneni nasemadolweni.
- Ukuqina kwesikhumba ezintendeni nasematheni, njengokungathi siyacindezelwa.
- Izinzipho ziyaguga, zijiye, noma ziyaxebuka.
- Ukuvela kwamaqhubu amancane amhlophe afana nama-blister (milia) esikhumbeni.
- Ubunzima bokugwinya ukudla (i-dysphagia) ngenxa yama-blister emlonyeni nasemphinjeni.
- Ukulimala njalo kungabangela ukulahleka kwegazi emzimbeni, okuholela ekulahlekelweni yigazi .
- Ezimweni ezinzima kakhulu, iminwe iyanamathelana.
- Ubuthakathaka be-enamel yamazinyo kanye nokukhula okungafanele kwamazinyo (i-hypoplasia).
- Ukukhula okubambezelekile ezinganeni.
Into ebaluleke kakhulu ukuthi lesi sifo asithelelani . Asidluliselwa kusuka komunye umuntu siye komunye, hhayi ngokuthinta noma nganoma iyiphi enye indlela. Lesi yisimo sofuzo ngokuphelele.
Lesi sifo sitholakala futhi selashwa kanjani?
Uma ingane yakho inalezi zimpawu, kubalulekile ukubona udokotela. Udokotela uvame ukwenza izivivinyo eziningana ukuze axilonge lesi simo.
- Ukuhlolwa Kwesikhumba: Lokhu kuhilela ukuthatha ingxenye encane kakhulu yesikhumba bese uyihlola ngaphansi kwesibonakhulu. Lokhu kungasiza ekunqumeni ukuthi yiluphi ungqimba lwesikhumba oluthintekile.
- Ukuhlolwa Kwezakhi Zofuzo:Lokhu kungasiza ekunqumeni ukuthi iyiphi i-gene enephutha nokuthi iluhlobo luni lwe-EB.
Ake sixoxe ngokwelashwa.
Into yokuqala okufanele uyisho ukuthi ngeshwa, alikho ikhambi le-EB okwamanje. Kodwa-ke, izimpawu zingalawulwa, izinkinga zingavinjelwa, futhi isiguli singaphila impilo entofontofo ngangokunokwenzeka. Imigomo eyinhloko yokwelashwa yile:
- Nciphisa ukuvuza ngangokunokwenzeka.
- Ukuqapha ukuvimbela amabhamuza namanxeba ukuthi angangenwa yizifo.
- Ukuphatha ubuhlungu.
- Ukuvimbela izinkinga zokudla okunempilo.
Lezi ezinye zezeluleko ezinikezwe odokotela ngalokhu.
- Gqoka izingubo ezithambile nezikhululekile : Kufanele ugqoke izingubo ezenziwe ngemicu yemvelo njengokotini, ezingaqinile, futhi ezingakugcobi emzimbeni wakho.
- Gcina isikhumba sakho sipholile: Ukushisa nokujuluka kungandisa amabhamuza, ngakho-ke kubalulekile ukugcina igumbi lisezingeni lokushisa elifanele.
- Ukusebenzisa amabhandeji akhethekile: Amabhandeji akhethekile kanye ne-gauze okunganamatheli esikhumbeni kufanele kusetshenziswe ezilonda.
- Ukunakekelwa kwezilonda nsuku zonke: Faka amafutha anqunywe udokotela bese ugcina izilonda zihlanzekile.
- Ukudla: Uma unezilonda emlonyeni, kufanele ugweme ukudla okushisayo, okubabayo, nokuqinile futhi udle ukudla okuthambile njengesobho, ukudla okucoliwe, kanye nama-pudding.
- Ukuhlinzwa: Kwezinye izimo ezinzima, kungase kudingeke ukuhlinzwa ukuze kwandiswe umphimbo uma unciphile noma ukuhlukanisa iminwe uma inamathele ndawonye.
Iseluleko sabazali abanakekela ingane ene-EB
Ukunakekela ingane enje kuyinselele enkulu kubazali. Kungaba nzima ngokomzimba nangokwengqondo. Kodwa uthando lwakho nokunakekela kwakho kungamandla amakhulu enganeni.
- Geza izandla zakho kahle njalo ngaphambi kokuthinta isikhumba somntwana wakho.
- Uma uphakamisa ingane, ungayibambi ngaphansi kwamakhwapha . Ukwenza kanjalo kungalimaza isikhumba. Beka izandla zakho ngaphansi komhlane namathanga engane bese uyiphakamisa ngokucophelela.
- Uma usebenzisa amanabukeni, sebenzisa ane-Velcro esikhundleni se-adhesive tape. Unganciphisa ukukhuhlana ngokusika amabhande e-elastic azungeze imilenze.
- Uma ugeza ingane yakho, kungcono ukuhlanza kancane ingxenye ngayinye yomzimba kunokuyifaka esitsheni samanzi.
- Ungayinciphisi imisebenzi yengane yakho. Nakuba ukudlala kanzima kungafanele, ukuzivocavoca okuthambile njengokubhukuda kungasiza ekuqiniseni imisipha yengane yakho.
- Uma nawe uzizwa ukhathele ngokwengqondo, ungangabazi ukufuna usizo kudokotela wakho, emndenini, noma kubazali bakho abake baba nokuhlangenwe nakho okufanayo.
Kufanele ubonane nodokotela ngokushesha nini?
Uma uphatha i-EB, ngezinye izikhathi kubalulekile ukufuna usizo lwezokwelapha ngokushesha. Qaphela izimpawu ezilandelayo.
- Uma unenkinga yokuphefumula. (Ezimweni ezinjalo , hamba ngokushesha eMnyangweni Wezimo Eziphuthumayo (ETU) wesibhedlela esiseduze. )
- Uma ungakwazi ukugwinya ukudla noma uketshezi.
- Uma inxeba libonakala lithelelekile (okusho ukuthi indawo ezungeze inxeba ibomvu, ivuvukele, izwa ukushisa, noma inobovu obuphumayo).
- Uma ingane inomkhuhlane.
- Uma kuvela uphawu olusha ongaluqondi.
Nakuba ukuphila nalesi simo kungaba yinselele, ngeseluleko nokunakekelwa okufanele kwezokwelapha, ungalawula ubuhlungu futhi uphile impilo enhle. Into ebaluleke kakhulu ukusebenzisana eduze nodokotela wakho njalo futhi ungazami ukubhekana nalezi zinto wedwa.
Umlayezo Wokuya Nawe Ekhaya
- I-Epidermolysis I-Bullosa (EB) yisifo sofuzo esizuzwa njengefa futhi esibangela ukuba isikhumba sibe buthaka kakhulu. Asithelelani.
- Nakuba kungekho ikhambi eliphelele lalokhu, ungaphila nakho ngokulawula izimpawu nokuvimbela izinkinga.
- Ukunakekelwa okukhethekile kwesikhumba kubaluleke kakhulu ukuvimbela amabhamuza namanxeba. Izingubo ezithambile, ukugcina isikhumba sipholile, kanye nokulandela izindlela zokunakekela isikhumba ezingalimazi isikhumba kufanele kulandelwe.
- Kubalulekile ukuqaphela izinto ezifana nobunzima bokugwinya, ukutheleleka, nobuhlungu nokufuna iseluleko sezokwelapha ngokushesha ezimweni ezinjalo.
- Lolu uhambo oluyinselele kokubili isiguli nomndeni. Kubalulekile ukufuna ukwesekwa kodokotela nakwamanye amaqembu okusekela.
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