Ingabe unezinkinga ngesikhumba sakho, izinwele, noma amazinyo? Ake sixoxe nge-Ectodermal Dysplasia!

Wake waphawula ukuthi ezinye izingane ezincane zinezinwele ezincane kakhulu, noma amazinyo azo afika ngesimo esingajwayelekile, noma azijuluki nhlobo? Uma sibona izinto ezinjengalezi, sinombuzo omncane, "Kungani lokhu kwenzeka?" Ngezinye izikhathi isizathu salokhu kungaba yisimo esingavamile sofuzo esibizwa ngokuthi i-Ectodermal Dysplasia , esizokhuluma ngaso namuhla. Ungakhathazeki, sizoxoxa ngalokhu ngokuningiliziwe.

Ngakho-ke, iyini i-Ectodermal Dysplasia?

Kalula nje, lesi yisifo esingavamile sofuzo . Yisimo esenzeka ngenxa yezinguquko ezakhiweni zethu zofuzo. Sithinta kakhulu izinwele zakho, amazinyo, izinzipho, kanye nezindlala zokujuluka . Ngezinye izikhathi singathinta namehlo akho, izindlebe, amabele, noma uhlelo lwezinzwa oluphakathi. Zonke lezi zingxenye zomzimba wethu zakhiwa kusukela ongqimbeni olungaphandle lwamaseli abizwa ngokuthi i-ectoderm lapho sisakhula esibelethweni njengomntwana osanda kuzalwa. Ngakho-ke lesi simo senzeka lapho kunenkinga ngokuthuthukiswa kwale ectoderm.

Lesi yisimo sokuzalwa , okusho ukuthi umuntu uzalwa naso. Kodwa-ke, akuwona wonke umuntu ozosibona ngokushesha ngemva kokuzalwa. Ngezinye izikhathi, abazali bayabona izimpawu zingakapheli izinsuku ezimbalwa umntwana ezelwe. Ngezinye izikhathi, izimpawu zingase zingabonakali iminyaka eminingi.

Ingabe kunezinhlobo ezahlukene zalesi simo?

Yebo, abacwaningi empeleni bathole izinhlobo ezingaphezu kuka-180 ze-Ectodermal Dysplasia . Uhlobo ngalunye lunezimpawu zalo. Cabanga ngakho njengokuthi amalungu omndeni ofanayo ahlukile komunye nomunye. Lezi zinhlobo azihlukile. Ake sibheke ezinye izibonelo, akunjalo?

• I-Hypohidrotic Ectodermal Dysplasia (HED): Lolu uhlobo oluvame kakhulu. Laba bantu banezindlala zokujuluka ezimbalwa. Ngakho-ke, abajuluki kakhulu njengabanye. Bangase futhi babhekane nokulahlekelwa izinwele, amazinyo amancane noma angekho, kanye nezimo zesikhumba zesikhathi eside njenge- eczema .
• I-Anhidrotic Ectodermal Dysplasia ene-Antimune Deficiency (EDA-ID): Lolu hlobo lubonakala ngezinkinga ezinkulu zesistimu yokuzivikela komzimba. Isibonelo, ama-antibodies ayancipha futhi izifo ezingamahlalakhona zivame ukwenzeka.
• I-Hay-Wells syndrome: Laba bantu bangase babe nezimpawu ezifana nokulahlekelwa izinwele, izifo zesikhumba, izinzipho eziqhekekayo, ukulahlekelwa amazinyo, izinkophe ezibonakala zinamathelene, kanye nomlomo oqhekekile kanye/noma ulwanga .
• I-Hidrotic Ectodermal Dysplasia (HED2) noma i-Clouston syndrome: Lokhu kuthinta kakhulu ukukhula kwezinwele, isikhumba kanye nezinzipho.
• I-Witkop syndrome: Kulesi simo, izinzipho ziyaphuka kalula futhi ziyaphuka kalula. Amazinyo nawo angase alahleke.(hypodontia) Amazinyo angase abe nesimo sekhoni futhi aqhelelane kakhulu.

Manje usuyaqonda ukuthi lesi akusona isifo esisodwa, kodwa inhlanganisela yezinkinga eziningi ezahlukene.

Ziyini izimpawu ze-Ectodermal Dysplasia?

Njengoba sishilo ngaphambili, uhlobo ngalunye lwe -Ectodermal Dysplasia lunezimpawu zalo ezihlukile. Kodwa-ke, ngokuvamile, umuntu onalesi simo uzobhekana okungenani nomphumela noma ukukhubazeka okulandelayo:

• Amehlo: Amehlo omile, ukuncipha kwamehlo, izinkinga ngengxenye engaphambili yeso, isibonelo , ukuguguleka kwe-cornea okuphindaphindiwe .
• Izinga lokukhula: Izinga lokukhula kwezingane ezinalesi simo lihamba kancane kunokulindelekile ngokweminyaka yazo.
• Izinwele: Izinwele ziyancipha, ziyaphuka kalula, noma zikhula kancane. Ngezinye izikhathi zingase zibe nezinwele ezincane kakhulu.
• Izitho Zomzimba: Izinguquko esimweni seminwe noma izinzwane, eminye iminwe ingase ingabi khona, noma iminwe ingase ihlanganiswe ndawonye (iminwe noma izinzwane ezine-webbed) .
• Umlomo: Umlomo oqhekekile kanye/noma ulwanga , izinkinga zamazinyo. Isibonelo, amazinyo agobile, amazinyo angekho, noma amazinyo anomumo ongavamile. Ngezinye izikhathi amazinyo angase abe nesimo esifana nesezinhlayiya.
• Izinzipho: Ukulahlekelwa yizinzipho zeminwe noma zezinzwane, ukuqina, ukuncipha, noma ukuqhekeka kwezinzipho.
• Isikhumba: Isikhumba siba nokuqubuka futhi somile.
• Izindlala zokujuluka: Zinezindlala zokujuluka ezimbalwa, ngakho-ke zijuluka kancane kunabanye abantu. Lokhu kubizwa ngokuthi i-Hypohidrotic Ectodermal Dysplasia (HED) . Njengoba wazi, ukujuluka yikho okupholisa imizimba yethu uma ishisa. Ngakho-ke uma sijuluka kancane, noma singajuluki nhlobo, imizimba yethu ingashisa kakhulu ngokushesha.
• Uhlelo lokuzala kanye nolokuchama: Ukungakwazi ukukhipha ngokuphelele isinye kwandisa ingozi yezimo ezithinta izitho zangasese noma uhlelo lomchamo, njenge -hydronephrosis , i-micropenis , noma amasende angavuki . Kungenzeka futhi ukuthi umuntu azalwe engenaso inso eyodwa noma zombili.

Into ebalulekile ukuthi akubona bonke abanalezi zimpawu abane -Ectodermal Dysplasia . Uma ucabanga ukuthi ungase ube nalezi zimpawu, udokotela wakho angakuqinisekisa ngokuhlolwa kwezakhi zofuzo .

Kungani lesi simo senzeka? Yiziphi izizathu?

Imbangela eyinhloko ye -Ectodermal Dysplasia yi-Ukuhlukahluka kwezakhi zofuzo. Lokhu kusho ukuthi kunezinguquko ezakhiweni zofuzo ezigcina ulwazi emzimbeni wethu. Uhlobo lwe-ectodermal dysplasia olukhula luncike ekutheni yiziphi izakhi zofuzo ezinalezi zinguquko, nokuthi yiziphi lezo zinguquko.

Lesi simo sivame ukudluliselwa kusuka esizukulwaneni kuya kwesinye . Lokhu kusho ukuthi uma othile emndenini enaso, kunethuba lokuthi nezizukulwane ezizayo nazo zizosithola. Kodwa-ke, akuvamile kakhulu, singakhula njengoguquko olusha lwezakhi zofuzo, noma ngabe akekho emndenini oke waba nalesi simo ngaphambili.

Ukuthola kanjani lokhu?

Uma utshela udokotela ukuthi wena noma ingane yakho inalezi zimpawu, uzoqala ngokuyihlola ngokomzimba . Ikakhulukazi, uzobheka izinkinga ezinweleni zakho, ezinzipho, emazinyweni nasezindlaleni zokujuluka.

Kuye ngezimpawu zakho, ungase futhi wenze izivivinyo zezithombe ezifana ne -X-ray noma i-CT scans .

Uma udokotela wakho esola ukuthi une-Ectodermal Dysplasia , cishe uzoyala ukuhlolwa kwezakhi zofuzo . Lokhu kuhlolwa kungabona izinguquko ezakhiweni zakho zofuzo. Kungakutshela nokuthi une-Ectodermal Dysplasia nokuthi, uma kunjalo, uhlobo luni.

Yiziphi izindlela zokwelapha?

Ukwelashwa kwalokhu kuncike ohlotsheni lwe -Ectodermal Dysplasia onayo nokuthi izimpawu zakho zimbi kangakanani. Akukho ukwelashwa kwalesi simo. Kodwa-ke, kunezindlela zokwelapha ezingakusiza ukuphatha izimpawu zakho futhi uphile impilo ejwayelekile.

Lezi zindlela zokwelapha zibhekana kakhulu nezimpawu ezivelayo:

• Ukugcina umzimba wakho upholile: Uma ungajuluki ngokwanele, kunzima ukupholisa umzimba wakho. Ngakho-ke ukuze uvimbele ukushisa okubangelwa ukushisa kanye nokukhathala ukushisa , phuza amanzi amaningi . Ungasebenzisa futhi amavesti okupholisa .
• Ukuhlinzwa kwamazinyo nomlomo: Ukufakelwa kwamazinyo , amabhuloho, noma amazinyo okufakelwa kungasetshenziswa ukufaka esikhundleni samazinyo alahlekile. Ukubopha kwamazinyo , ama-veneer, noma imiqhele nakho kungasetshenziswa ukulungisa amazinyo amancane, angamile kahle.
• Ukwelashwa kokulahlekelwa izinwele: Kunemithi efana ne -Minoxidil (Rogaine®) yokukhuthaza ukukhula kwezinwele.
• Isithambisi sesikhumba: Kubaluleke kakhulu ukusebenzisa njalo amafutha okugcoba, okhilimu, kanye nama-lotion ukunciphisa ukoma kwesikhumba nokuxebuka .

I-Ectodermal DysplasiaNgenxa yokuthi kuthinta izingxenye ezahlukene zomzimba, ithimba lakho lezokwelapha lingafaka ochwepheshe abahlukahlukene, njengodokotela bamazinyo, odokotela besikhumba, kanye nochwepheshe bezakhi zofuzo.

Izingane ezizalwa zinezinkinga ezinkulu kufanele ziqale ukwelashwa okukhethekile ngokushesha okukhulu. Udokotela wakho uzokutshela ukuthi yini ongayilindela kuye ngesimo sakho.

Kunjani ukuphila nalesi simo? (I-Outlook)

Uma lesi simo sitholakala kusenesikhathi futhi selashwa kahle, kuvame ukuba khona ukuphila impilo enhle . Iningi labantu abane -Ectodermal Dysplasia baphila impilo evamile.

Njengoba sishilo ngaphambili, lokhu akukwazi ukwelapheka ngokuphelele. Kodwa ngokwelashwa, izimpawu zingalawulwa kahle . Ngakho-ke akukho okufanele ukwesabe.

Izinto okufanele uzazi uma ingane yakho inalesi simo

Kuye ngezimpawu nesimo sengane yakho, ingadinga ukwelashwa okuningana okuhlukene. Ukuhleleka nesikhathi salokhu kwelashwa kuzoncika ohlotsheni lwe -Ectodermal Dysplasia ingane yakho enayo kanye nobunzima bezimpawu zayo. Udokotela wakho uzosebenza nawe ukuthuthukisa uhlelo lokwelapha olulungele ingane yakho.

Ngesikhathi esinjengalesi, kuyinto evamile kini njengabazali ukuba nemibuzo eminingi. Xoxani ngayo yonke le mibuzo nodokotela bese niyixazulula.

Ingabe lokhu kungavinjelwa?

Ngeshwa, lesi simo asinakuvinjelwa. Sibangelwa izinguquko zofuzo esingenakuzilawula. Uma wena noma ingane yakho nine- Ectodermal Dysplasia , akungenxa yalokho enikwenzile noma eningakwenzanga. Ungakhathazeki ngakho.

Uma unalesi simo futhi uhlela ukuqala umndeni, cabanga ngokuthola ukwelulekwa ngofuzo . Umeluleki wezakhi zofuzo angakusiza uqonde amathuba akho okuba nengane enesifo sofuzo.

Kufanele ubonane nini nodokotela?

Uma wena noma ingane yakho ninezimpawu ocabanga ukuthi zingase zihlobene ne -Ectodermal Dysplasia , khuluma nodokotela wakho. Isibonelo:

• Ukubola kwamazinyo noma ukulahlekelwa amazinyo
• Iminwe enezintambo
• Ukoma njalo noma ukuqubuka esikhumbeni
• Ukungahambi kahle emehlweni noma ezindlebeni

Uma ubona izinto ezinje, bona udokotela ngokushesha.

Yimiphi imibuzo okufanele uyibuze udokotela wakho?

Uma wena noma ingane yakho nitholakala ninesifo i-Ectodermal Dysplasia , ungase ufune ukubuza udokotela wakho imibuzo efana nale:

• Uhlobo luni lwe-ectodermal dysplasia enginayo/ingane yami?
• Yiziphi izindlela zokwelapha enginazo?
• Lesi simo sizoyithinta kanjani impilo yami/yengane yami?
• Yiziphi izinkinga okufanele ngiziqaphele?
• Kufanele ngimbone kangaki udokotela?
• Ingabe akhona amaqembu okusekelana asiza abantu kulezi zimo?

Ukuthola ukuthi wena noma ingane yakho ine -Ectodermal Dysplasia kungaba yinto enzima kakhulu. Kuzoba nokuhlolwa kanye nodokotela abaningi okufanele ubabone. Kodwa uma usuthole ukuxilongwa , uzosizwa ukuqonda ukuthi izimpawu zakho zihlobene kanjani, ukuthi ungazilawula kanjani, nokuthi yini ongayilindela esikhathini esizayo.

Ungakhathazeki, ngokwelashwa okufanele, ungaphatha i-ectodermal dysplasia . Kungathatha isikhathi nesineke ukuthola ukuthi yini ekusebenzela kahle. Khumbula, awuwedwa. Ukukhuluma nabanye ababhekene nento efanayo kungaba umthombo omkhulu wamandla. Buza udokotela wakho ngamaqembu okusekela kanye nezinsiza.

Umlayezo Wokuya Nawe Ekhaya

Kulungile, ake sibukeze amaphuzu abaluleke kakhulu esixoxe ngawo namuhla mayelana ne -Ectodermal Dysplasia .

• Lesi yisifo esingavamile esibangelwa izakhi zofuzo .
• Kuthinta kakhulu izinwele, amazinyo, izinzipho kanye nezindlala zokujuluka .
• Kunezinhlobo ezingaphezu kuka-180, ngakho-ke izimpawu ziyahlukahluka .
• Ukuhlolwa kwezakhi zofuzo kuyindlela kuphela yokuxilonga ngokunembile.
• Nakuba kungekho ukwelashwa okuphelele, kunezindlela zokwelapha zokulawula izimpawu .
• Uma kutholakale kusenesikhathi futhi kwelashwa kahle, abantu abaningi bangaphila impilo evamile .
• Awuwedwa, ungathola usizo emaqenjini okusekela .

Ngakho-ke, uma wena noma othile omaziyo enalezi zimpawu, ungesabi ukubona udokotela bese uthola iseluleko. Ukuqwashisa kuyisinyathelo sokuqala.

I- Ectodermal dysplasia, izifo zofuzo, izifo zesikhumba, izinkinga zamazinyo, izinkinga zezinwele, izindlala zokujuluka, impilo yabantwana