Ingaba unengxaki ngolusu lwakho, iinwele, okanye amazinyo? Masithethe nge-Ectodermal Dysplasia!

Ngaba wakha waphawula ukuba abanye abantwana abancinci baneenwele ezincinci kakhulu, okanye amazinyo abo afika ngendlela engaqhelekanga, okanye ababila konke konke? Xa sibona izinto ezinje, sinombuzo omncinci, "Kutheni oku kusenzeka?" Ngamanye amaxesha isizathu soku singaba yimeko engaqhelekanga yemfuza ebizwa ngokuba yi -Ectodermal Dysplasia , esiza kuthetha ngayo namhlanje. Ungakhathazeki, siza kuthetha ngale nto ngokweenkcukacha.

Ngoko ke, yintoni i-Ectodermal Dysplasia?

Ngamafutshane, esi sisifo esingaqhelekanga semfuza . Sisifo esenzeka ngenxa yotshintsho kwimfuza yethu. Sichaphazela kakhulu iinwele zakho, amazinyo, iinzipho, kunye namadlala okubila . Ngamanye amaxesha sinokuchaphazela namehlo akho, iindlebe, amabele, okanye inkqubo yemithambo-luvo ephakathi. Zonke ezi ndawo zomzimba wethu zenziwe ngomaleko ongaphandle weeseli ezibizwa ngokuba yi-ectoderm xa sikhula esibelekweni njengomntwana ongekazalwa. Ngoko ke le meko yenzeka xa kukho ingxaki ngophuhliso lwe-ectoderm.

Le yimeko yokuzalwa , nto leyo ethetha ukuba umntu uzalwa nayo. Nangona kunjalo, ayinguye wonke umntu oza kuyiqaphela kwangoko emva kokuzalwa. Ngamanye amaxesha, abazali bayabona iimpawu kwiintsuku ezimbalwa emva kokuzalwa komntwana. Ngamanye amaxesha, iimpawu zisenokungabonakali iminyaka.

Ngaba kukho iintlobo ezahlukeneyo zale meko?

Ewe, abaphandi baye bafumanisa iintlobo ezingaphezu kwe-180 ze-Ectodermal Dysplasia . Uhlobo ngalunye luneempawu zalo. Cinga nje ngokuba amalungu osapho olunye ahlukile omnye komnye. Ezi ntlobo azifani. Makhe sijonge eminye imizekelo, akunjalo?

• I-Hypohidrotic Ectodermal Dysplasia (HED): Olu lolona hlobo luxhaphakileyo. Aba bantu bane-sweat glands ezimbalwa. Ngenxa yoko, ababi namanzi amaninzi njengabanye. Basenokuphulukana neenwele, amazinyo amancinci okanye angekhoyo, kunye neemeko zolusu ezihlala ixesha elide ezifana ne -eczema .
• I-Anhidrotic Ectodermal Dysplasia ene-Immune Deficiency (EDA-ID): Olu hlobo lubonakala ngeengxaki ezinkulu zenkqubo yomzimba yokuzikhusela. Umzekelo, ii-antibodies ziyancitshiswa kwaye usulelo olungapheliyo luxhaphakile.
• Isifo sikaHay-Wells: Aba bantu banokufumana iimpawu ezinje ngokulahlekelwa ziinwele, usulelo lwentloko, iinzipho eziqhekekayo, ukulahlekelwa ngamazinyo, iinkophe ezibonakala zinamathelene, kunye nomlomo oqhekekileyo kunye/okanye incasa .
• I-Hidrotic Ectodermal Dysplasia (HED2) okanye i-Clouston syndrome: Oku kuchaphazela kakhulu ukukhula kweenwele, ulusu kunye nezinzipho.
• I-Witkop syndrome: Kule meko, iinzipho ziyaphuka kwaye ziyaphuka lula. Amazinyo nawo anokulahleka.(hypodontia) Amazinyo anokuba nemo yekhoni kwaye aqelelane kakhulu.

Ngoku uyaqonda ukuba esi asisosifo sithile, kodwa yindibaniselwano yeengxaki ezininzi ezahlukeneyo.

Ziziphi iimpawu ze-Ectodermal Dysplasia?

Njengoko besitshilo ngaphambili, uhlobo ngalunye lwe- Ectodermal Dysplasia luneempawu zalo ezahlukileyo. Nangona kunjalo, ngokubanzi, umntu onesi sifo uya kuba nenye yezi ziphumo okanye iingxaki zilandelayo:

• Amehlo: Amehlo omileyo, ukuncitshiswa kwamehlo, iingxaki zenxalenye engaphambili yeliso, umzekelo , ukukhukuliseka kwe-cornea okuphindaphindiweyo .
• Izinga lokukhula: Izinga lokukhula kwabantwana abanale meko lihamba kancinci kunokuba bekulindelwe ngokweminyaka yabo.
• Iinwele: Ziyancipha iinwele, ziyaphuka lula, okanye zikhula kancinci. Ngamanye amaxesha zisenokuba zincinci kakhulu iinwele.
• Imilenze: Utshintsho kwimo yeminwe okanye iinzwane, eminye iminwe isenokungabikho, okanye iminwe inokuba idibene (iminwe okanye iinzwane ezidityanisiweyo) .
• Umlomo: Imilebe eqhekekileyo kunye/okanye incasa , iingxaki zamazinyo. Umzekelo, amazinyo agobileyo, amazinyo angekhoyo, okanye amazinyo amile ngendlela engaqhelekanga. Ngamanye amaxesha amazinyo anokuba nemilo efana neyesiqwenga.
• Iinzipho: Ukulahlekelwa ziinzipho zeminwe okanye zeenyawo, ukuqina, ukuncitshiswa, okanye ukuqhekeka kwezinzipho.
• Ulusu: Ulusu luba namaqhuqhuva kwaye lome.
• Iigland zokubila: Zinegland zokubila ezimbalwa, ngoko ke azibila kangako kunabanye abantu. Oku kubizwa ngokuba yiHypohidrotic Ectodermal Dysplasia (HED) . Njengoko usazi, ukubila kokona kupholisa imizimba yethu xa ishushu. Ngoko ke xa sibila kancinci, okanye singabila konke konke, imizimba yethu inokufudumala kakhulu ngokukhawuleza.
• Inkqubo yokuzala kunye nomchamo: Ukungakwazi ukukhupha ngokupheleleyo isinyi kwandisa umngcipheko weemeko ezichaphazela amalungu esini okanye inkqubo yomchamo, ezifana ne -hydronephrosis , i-micropenis , okanye amasende angaphakamanga . Kunokwenzeka nokuba uzalwe engenaso isintso esinye okanye zombini.

Into ebalulekileyo kukuba ayinguye wonke umntu onezi mpawu one- Ectodermal Dysplasia . Ukuba ucinga ukuba unokuba nazo ezi mpawu, ugqirha wakho angakuqinisekisa oko ngovavanyo lwemfuza .

Kutheni le meko isenzeka? Zithini izizathu?

Eyona nto ibangela i -Ectodermal Dysplasia kukubaUtshintsho kwizakhi zofuzo. Oku kuthetha ukuba kukho utshintsho kwizakhi zofuzo ezigcina ulwazi emzimbeni wethu. Uhlobo lwe-ectodermal dysplasia oluphuhlisayo luxhomekeke ekubeni zeziphi izakhi zofuzo ezinalo olu tshintsho, kwaye zeziphi ezo tshintsho.

Le meko idla ngokudluliselwa kwizizukulwana ngezizukulwana . Oku kuthetha ukuba ukuba kukho umntu kusapho onayo, kukho ithuba lokuba nezizukulwana ezizayo ziya kuyihlakulela. Nangona kunjalo, kunqabile kakhulu, inokuvela njengotshintsho olutsha lwemfuza, nokuba akukho mntu kusapho wakhe waba nale meko ngaphambili.

Uyixilonga njani le nto?

Xa uxelela ugqirha ukuba wena okanye umntwana wakho unezi mpawu, uya kuqala enze uvavanyo lomzimba . Ngokukodwa, uya kujonga iingxaki kwiinwele zakho, iinzipho, amazinyo kunye namadlala okubila.

Ngokuxhomekeke kwiimpawu zakho, usenokuba neemvavanyo zomfanekiso ezifana nee -X-ray okanye ii-CT scans .

Ukuba ugqirha wakho ukrokrela ukuba une -Ectodermal Dysplasia , mhlawumbi uya kuyalela uvavanyo lwe-genetic . Olu vavanyo lunokuchonga utshintsho kwi-genes yakho. Lunokukuxelela ngokuchanekileyo ukuba unayo na i-Ectodermal Dysplasia kwaye, ukuba kunjalo, uhlobo luni.

Zithini iindlela zonyango?

Unyango loku luxhomekeke kuhlobo lwe- Ectodermal Dysplasia onayo kunye nokuba iimpawu zakho zinzima kangakanani. Akukho nyango lwale meko. Nangona kunjalo, kukho unyango olunokukunceda ulawule iimpawu zakho kwaye uphile ubomi obuqhelekileyo.

Olu nyango lujongana kakhulu neempawu ezivelayo:

• Ukugcina umzimba wakho upholile: Ukuba awubi manzi ngokwaneleyo, kunzima ukupholisa umzimba wakho. Ngoko ke, ukuze uthintele ukurhawuzelelwa bubushushu kunye nokudinwa bubushushu , sela amanzi amaninzi . Ungasebenzisa neevesti zokupholisa .
• Utyando lwamazinyo nolomlomo: Ii-implants zamazinyo , iibridges, okanye amazinyo okufakelwa zingasetyenziselwa ukuthatha indawo yamazinyo angekhoyo. Ii-dental bonding , ii-veneers, okanye ii-crowns nazo zingasetyenziselwa ukulungisa amazinyo amancinci, anesimo esingalunganga.
• Unyango lokulahleka kweenwele: Kukho amayeza afana neMinoxidil (Rogaine®) okukhuthaza ukukhula kweenwele.
• Isithambisi solusu: Kubaluleke kakhulu ukusebenzisa rhoqo amafutha okugcoba, iikhrimu, kunye neeloshini ukunciphisa ukoma nokukhupha ulusu.

I-Ectodermal DysplasiaNgenxa yokuba ichaphazela amalungu ahlukeneyo omzimba, iqela lakho lezonyango linokubandakanya iingcali ezahlukeneyo, ezinje ngoogqirha bamazinyo, oogqirha besikhumba, kunye neengcali zemfuza.

Iintsana ezizelwe zineengxaki ezinkulu kufuneka ziqale unyango olukhethekileyo ngokukhawuleza. Ugqirha wakho uza kukuxelela into omawuyilindele ngokwemeko yakho.

Kunjani ukuphila nale meko? (Imbono)

Ukuba le meko ifunyaniswa kwangethuba kwaye inyangwa ngokufanelekileyo, kunokwenzeka ukuba uphile ubomi obulungileyo . Uninzi lwabantu abane- Ectodermal Dysplasia baphila ubomi obuqhelekileyo.

Njengoko besitshilo ngaphambili, oku akunakunyangwa ngokupheleleyo. Kodwa ngonyango, iimpawu zinokulawulwa kakuhle . Ngoko ke akukho nto yokoyika.

Izinto ekufuneka uzazi ukuba umntwana wakho unale meko

Ngokuxhomekeke kwiimpawu kunye nemeko yomntwana wakho, banokufuna unyango olwahlukeneyo. Ulandelelwano kunye nexesha lonyango luya kuxhomekeka kuhlobo lwe- Ectodermal Dysplasia umntwana wakho anayo kunye nobunzima beempawu zakhe. Ugqirha wakho uya kusebenza nawe ukwenza isicwangciso sonyango esilungele umntwana wakho.

Ngexesha elinje, kuyinto eqhelekileyo kuni njengabazali ukuba nemibuzo emininzi. Xoxani ngayo yonke le mibuzo nogqirha nize niyisombulule.

Ngaba oku kungathintelwa?

Ngelishwa, le meko ayinakuthintelwa. Ibangelwa lutshintsho lwemfuza esingenakukwazi ukululawula. Ukuba wena okanye umntwana wakho nine- Ectodermal Dysplasia , ayibangelwa yinto eniyenzileyo okanye eningayenzanga. Musa ukukhathazeka ngayo.

Ukuba unale meko kwaye uceba ukuqala usapho, cinga ngokufumana ingcebiso ngemfuza . Umcebisi ngemfuza angakunceda uqonde amathuba akho okuba nomntwana onemfuza.

Ufanele uye nini kugqirha?

Ukuba wena okanye umntwana wakho nineempawu ocinga ukuba zinxulumene ne -Ectodermal Dysplasia , thetha nogqirha wakho. Umzekelo:

• Ukubola kwamazinyo okanye ukulahleka kwamazinyo
• Iminwe eneentambo
• Ukoma rhoqo okanye ukurhawuzelela eluswini
• Izinto ezingaqhelekanga emehlweni okanye ezindlebeni

Ukuba ubona izinto ezinje, bonana nogqirha ngokukhawuleza.

Yeyiphi imibuzo omele uyibuze ugqirha wakho?

Ukuba wena okanye umntwana wakho nifunyaniswa ukuba nine- Ectodermal Dysplasia , ningathanda ukubuza ugqirha wakho imibuzo efana nale:

• Loluphi uhlobo lwe-ectodermal dysplasia endinalo/umntwana wam?
• Ziziphi iindlela zonyango endinazo?
• Le meko iza kuyichaphazela njani ubomi bam/bomntwana wam?
• Zeziphi iingxaki ekufuneka ndiziqaphele?
• Ndifanele ndimbone ugqirha kangaphi?
• Ngaba kukho amaqela enkxaso anceda abantu kwezi meko?

Ukufumanisa ukuba wena okanye umntwana wakho une- Ectodermal Dysplasia kunokuba nzima kakhulu. Kuza kubakho iimvavanyo kunye noogqirha abaninzi ekufuneka babonwe. Kodwa wakuba ufumene uxilongo , uza kuncedwa ukuba uqonde indlela iimpawu zakho ezinxulumene ngayo, indlela yokuzilawula, kunye nento omawuyilindele kwixesha elizayo.

Ungakhathazeki, ngonyango olufanelekileyo, ungalawula i-ectodermal dysplasia . Kungathatha ixesha kunye nomonde ukufumana eyona nto ikulungeleyo. Khumbula, awuwedwa. Ukuthetha nabanye abadlula kwinto efanayo kunokuba ngumthombo omkhulu wamandla. Buza ugqirha wakho malunga namaqela enkxaso kunye nezibonelelo.

Umyalezo Wokuya Ekhaya

Kulungile, makhe sijonge amanqaku abaluleke kakhulu esiwathethe namhlanje malunga ne -Ectodermal Dysplasia .

• Esi sisifo esingaqhelekanga esibangelwa lufuzo .
• Ichaphazela kakhulu iinwele, amazinyo, iinzipho, kunye namadlala okubila .
• Kukho iintlobo ezingaphezu kwe-180, ngoko ke iimpawu ziyahluka .
• Uvavanyo lwemfuza yeyona ndlela ikuphela kwayo yokuyixilonga ngokuchanekileyo.
• Nangona kungekho nyango lupheleleyo, kukho iindlela zonyango zokulawula iimpawu .
• Ukuba ifunyenwe kwangethuba kwaye inyangwa ngokufanelekileyo, abantu abaninzi banokuphila ubomi obuqhelekileyo .
• Awuwedwa, ungafumana uncedo kumaqela enkxaso .

Ngoko ke, ukuba wena okanye umntu omaziyo unezi mpawu, ungoyiki ukubona ugqirha aze afumane ingcebiso. Ukwazi linyathelo lokuqala.

I- Ectodermal dysplasia, izifo zemfuza, izifo zesikhumba, iingxaki zamazinyo, iingxaki zeenwele, iindlala zokubila, impilo yabantwana