Khawuthelekelele ulusu lomntwana wakho omncinci luba namadyungudyungu kwaye lonakaliswe lula ziimpahla azinxibayo, nokuba lukrweleka kancinci ndaweni ithile. Le yimeko ebuhlungu kakhulu nebuhlungu ukuyiva, akunjalo? Ngelishwa, abanye abantwana nabantu abadala bajongene nale meko. Namhlanje siza kuthetha ngemeko ebizwa ngokuba yi-'Epidermolysis Bullosa' (EB), ebangela ukuba ulusu olunjalo lube buthathaka kwaye lube novelwano. Abanye abantu babiza aba bantwana ngothando ngokuthi "ziintsana zebhabhathane" kuba ulusu lwabo lubuthathaka njengephiko lebhabhathane.
Ukubeka nje, yintoni i-Epidermolysis Bullosa (EB)?
I-Epidermolysis Bullosa (EB) ayisosifo siqhelekileyo. Sisifo semfuza, oko kuthetha ukuba sidluliselwa kwizizukulwana ngezizukulwana. Ulusu lomntu onesi sifo lubuthathaka kakhulu. Nokuba uxinzelelo oluncinci okanye ukungqubana okungenakulimaza umntu oqhelekileyo, njengokukhuhla impahla okanye umntu ochukumisa ulusu lwakhe, ngamanye amaxesha kunokubangela amadyungudyungu namanxeba.
Ulusu lwethu lwenziwe ngamaleya aliqela aphambili. La maleya abanjwe kunye ziiproteni. Ukuchaneka, iproteni ebizwa ngokuba yi-collagen ibaluleke kakhulu koku. Ifana 'nentsini' enamathela kumaleya esikhumba. Ngenxa yesiphene semfuza kubantu abanesifo se-EB, le protein ayiveliswanga kakuhle. Ngoko ke, ngenxa yokuba loo 'ntsini' ibuthathaka, amaleya esikhumba ayahlukana ngokulula, ayizalisa ngolwelo kwaye enze amadyungudyungu. La madyungudyungu anokwakheka kungekuphela nje kwiindawo ezifana nezandla, iinyawo, iingqiniba, namadolo, kodwa nangaphakathi emlonyeni, emqaleni, nangaphakathi emzimbeni.
Ziziphi iintlobo eziphambili zesifo se-EB?
I-EB yahlulwe yaba ziintlobo ezine eziphambili, kuxhomekeke kumaleko wolusu apho amaqhuqhuva enziwa khona. Oku kubaluleke kakhulu ukuba oogqirha bagqibe ngonyango.
| Uhlobo lwe-EB | Umaleko wolusu ochaphazelekayo | Inkcazo elula |
|---|---|---|
| I-EB Simplex (EBS) | Umaleko ophezulu wolusu (i-epidermis) | Olu lolona hlobo luxhaphakileyo. Ludla ngokuba buthathaka kakhulu. Xa amaqhuqhuva epholile, akukho zibazi zininzi. |
| I-Junctional EB (JEB) | Apho kudibana khona iileya ezimbini zolusu | Oku kunqabile kancinci. Amaqhuqhuva anokwakheka emlonyeni nakwimibhobho yomoya. Angahluka ukusuka kophakathi ukuya kobunzima. |
| I-Dystrophic EB (DEB) | Umaleko ongaphantsi kwesikhumba (i-dermis) | Kolu hlobo, amadyungudyungu anokushiya amanxeba njengoko ephola. Kunokubakho nezinto ezifana neminwe enamathelanayo. |
| Isifo seKindler | Kuyo nayiphi na imaleko yesikhumba | Olu luhlobo olungaqhelekanga kakhulu. Amaqhuqhuva anokwakheka kwiindawo ezahlukeneyo zolusu. |
Ziziphi iimpawu ezinokubakho zesifo se-EB?
Iimpawu zinokwahluka ngokuxhomekeke kuhlobo lwesifo se-EB. Iimpawu zihlala ziqala ukubonakala ebuntwaneni.
- Uphawu oluphambili kukudumba kwesikhumba, ingakumbi ezandleni, ezinyaweni, ezingqinibeni nasemadolweni.
- Ukujiya kolusu ezintendeni nasezinyaweni, ngokungathi luyacudiswa.
- Izinzipho ziyaguquguquka, ziqine, okanye zixobuke.
- Ukubonakala kwamaqhuqhuva amancinci amhlophe afana namaqhuqhuva (milia) eluswini.
- Ubunzima bokuginya ukutya (dysphagia) ngenxa yamadyungudyungu emlonyeni nasemqaleni.
- Ukwenzakala rhoqo kunokubangela ukulahleka kwegazi emzimbeni, nto leyo ekhokelela kwi-anemia .
- Kwiimeko ezinzima, iminwe iyanamathelana.
- Ukubuthathaka kwe-enamel yamazinyo kunye nokukhula okungaphelelanga kwamazinyo (hypoplasia).
- Ukukhula okungalindelekanga ebantwaneni.
Eyona nto ibalulekileyo kukuba esi sifo asisuleli . Asidluliselwa ukusuka komnye umntu ukuya komnye, kungekhona ngokuchukumisa okanye nangayiphi na indlela. Esi sisifo esibangelwa yimfuza ngokupheleleyo.
Sifunyaniswa njani esi sifo kwaye sinyangwa njani?
Ukuba umntwana wakho unezi mpawu, kubalulekile ukubona ugqirha. Ugqirha uhlala esenza iimvavanyo ezininzi ukuze afumanise esi sifo.
- I-Skin Biopsy: Oku kuquka ukuthatha iqhekeza elincinci kakhulu lesikhumba uze ulihlolisise nge-microscope. Oku kunokunceda ekuqinisekiseni ukuba loluphi na ulusu oluchaphazelekileyo.
- Uvavanyo lweMfuzo:Oku kunokunceda ekuchongeni ukuba loluphi uhlobo lwe-gene oluneziphene kwaye loluphi uhlobo lwe-EB.
Masithethe ngonyango.
Into yokuqala ekufuneka siyithethe kukuba ngelishwa, akukho nyango lwe-EB okwangoku. Nangona kunjalo, iimpawu zinokulawulwa, iingxaki zinokuthintelwa, kwaye isigulana sinokuphila ubomi obutofotofo kangangoko kunokwenzeka. Iinjongo eziphambili zonyango zezi:
- Nciphisa ukudumba kwamadyungudyungu kangangoko kunokwenzeka.
- Ukukhathalela ukuthintela amaqhuqhuva kunye namanxeba ukuba angasuleleki.
- Ukulawula iintlungu.
- Ukuthintela iingxaki zesondlo.
Ezi zezinye zeengcebiso ezinikwe ngoogqirha malunga noku.
- Nxiba impahla ethambileyo nekhululekileyo : Ufanele unxibe impahla eyenziwe ngemicu yendalo efana nomqhaphu, engaqiniyo, kwaye engakhuhli umzimba wakho.
- Gcina ulusu lwakho lupholile: Ubushushu nokubila kunokunyusa amadyungudyungu, ngoko ke kubalulekile ukugcina igumbi likwiqondo lobushushu elifanelekileyo.
- Ukusebenzisa iibhandishi ezikhethekileyo: Iibhandishi ezikhethekileyo kunye negauze ezinganamatheliyo eluswini kufuneka zisetyenziswe kumanxeba.
- Ukunyamekela amanxeba imihla ngemihla: Thambisa amafutha abhalwe ngugqirha uze ugcine amanxeba ecocekile.
- Ukutya: Ukuba unezilonda emlonyeni, kufuneka uziphephe ukutya okushushu, okuneziqholo, nokuqinileyo kwaye utye ukutya okuthambileyo okufana neesuphu, ukutya okucoliweyo, kunye neepudding.
- Utyando: Kwezinye iimeko ezinzima, utyando lunokufuneka ukuze kwandiswe umphimbo ukuba unciphile okanye ukuze kwahlulwe iminwe ukuba inamathele kunye.
Ingcebiso kubazali abanyamekela umntwana one-EB
Ukunyamekela umntwana onje ngumceli mngeni omkhulu kubazali. Kunokuba nzima emzimbeni nasengqondweni. Kodwa uthando lwakho kunye nenkathalo yakho zizinto ezibaluleke kakhulu kumntwana.
- Hlamba izandla zakho kakuhle ngaphambi kokuba uchukumise ulusu lomntwana wakho.
- Xa uphakamisa umntwana, musa ukumbamba phantsi kwamakhwapha . Ukwenza njalo kungonakalisa ulusu. Beka izandla zakho phantsi komqolo nasemathanga omntwana uze umphakamise ngononophelo.
- Ukuba usebenzisa amanabukeni, sebenzisa aneVelcro endaweni yeteyiphu yokuncamathelisa. Unganciphisa ukungqubana ngokusika iibhanti ze-elastic ezijikeleze imilenze.
- Xa uhlamba umntwana wakho, kungcono ukucoca ngobunono yonke indawo yomzimba wakho kunokuba uyifake emanzini.
- Musa ukuyithintela imisebenzi yomntwana wakho. Nangona ukudlala gwenxa kungafanelekanga, umthambo othambileyo njengokudada unokunceda ukuqinisa izihlunu zomntwana wakho.
- Ukuba nawe uziva udiniwe engqondweni, ungathandabuzi ukufuna uncedo kugqirha wakho, kusapho lwakho, okanye kubazali bakho abaye baba namava afanayo.
Ufanele uye nini kugqirha ngoko nangoko?
Xa uphatha i-EB, ngamanye amaxesha kubalulekile ukufuna uncedo lwezonyango ngokukhawuleza. Qaphela ezi mpawu zilandelayo.
- Ukuba unengxaki yokuphefumla. (Kwiimeko ezinjalo , yiya kwiSebe leNgxamiseko (i-ETU) yesibhedlele esikufutshane ngoko nangoko. )
- Ukuba awukwazi ukuginya ukutya okanye ulwelo.
- Ukuba inxeba libonakala linesifo (oko kuthetha ukuba indawo ejikeleze inxeba ibomvu, idumbile, ivakala ishushu, okanye inobovu obuphumayo).
- Ukuba umntwana unomkhuhlane.
- Ukuba kuvela uphawu olutsha ongenakuliqonda.
Nangona ukuhlala nale meko kunokuba nzima, ngeengcebiso zonyango ezifanelekileyo kunye nokhathalelo, ungazilawula iintlungu kwaye uphile ubomi obulungileyo. Eyona nto ibalulekileyo kukuhlala usebenzisana nogqirha wakho kwaye ungazami ukujongana nezi zinto wedwa.
Umyalezo Wokuya Ekhaya
- I-Epidermolysis I-Bullosa (EB) yimeko yemfuza efunyanwa njengelifa kwaye ibangela ukuba ulusu lube buthathaka kakhulu. Ayisuleli.
- Nangona kungekho nyango lupheleleyo loku, ungaphila nalo ngokulawula iimpawu nokuthintela iingxaki.
- Ukunyamekela ulusu ngokukodwa kubaluleke kakhulu ukuthintela amadyungudyungu namanxeba. Kufuneka kulandelwe impahla ethambileyo, kugcinwe ulusu lupholile, kulandelwe neendlela zokunyamekela ulusu ezingalonakalisi ulusu.
- Kubalulekile ukuqaphela izinto ezinje ngobunzima bokuginya, usulelo, kunye nentlungu, kwaye ufune iingcebiso zonyango ngokukhawuleza kwiimeko ezinjalo.
- Olu luhambo olunzima kwisigulana nakwintsapho. Kubalulekile ukufuna inkxaso koogqirha nakwamanye amaqela enkxaso.











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