Ukusiza izingane nge-Ehlers-Danlos syndrome ziphumelele futhi zihlale ziphephile
Othisha bangaba abalingani obuhle ekugcineni ingane yakho nge-Ehlers-Danlos syndrome iphephile futhi iphumelele esikoleni, kodwa kuzodingeka uqiniseke ukuthi banolwazi lonke oludingayo ukusiza. Yiziphi izinto ezibalulekile okufanele uzihlanganyele nothisha wengane yakho ngaphambi konyaka wesikole uqala?
Ukuze uqonde kangcono ukuthi yini othisha okufanele bazi uma ufundisa ingane nge-Ehlers-Danlos syndrome kuyasiza ukuhlola kuqala izinto eziyisisekelo salesi simo kanye nezimpawu.
Kuyini u-Ehlers-Danlos Syndrome (EDS)?
I-Ehlers-Danlos syndrome (i-EDS) ayiyona i-syndrome eyodwa, kodwa kunalokho iqoqo lezimiso ezithinta izicubu ezixhunyiwe ezifana nesikhumba, amathambo, i- cartilage , ama- tendon , imithwalo yegazi, nokuningi.
I-Ehlers-Danlos syndrome yisimo esiyifa esihlobene nokuguquka kwezakhi zofuzo kwelinye lamagciwane angaphezu kuka-12 ahilelekile ekwakheni izicubu ezixhumene emzimbeni. Ezinye izinhlobo ziyi-autosomal ephezulu futhi ezinye ziyi-autosomal ephindaphindiwe. I-EDS ingavela futhi ngenxa yokushintshwa okusha kubantu abangenalo umlando womndeni wesifo.
Kubalulekile ukuthi uqaphele ukuthi kunezimpawu eziningi zempawu ezingase zenzeke kubantu abane-EDS. Abanye abantu baxilongwa ngokushesha njengabantwana abancane, kuyilapho abanye bengaboni i-syndrome baze baba abantu abadala. I-EDS ingaba mnene njenge "amalunga okuxekethile" (okungaba "inzuzo" kuma-gymnastics) noma okunzima ngokwanele ukuba kube usongela ukuphila.
Izimpawu ze-Ehlers-Danlos Syndrome
Izimpawu zika-Ehlers-Danlos syndrome zingafaka:
- Amajoyina amaningi aguquguqukayo ( ukuxuba okuhlangene ): Ngokwemibandela, lokhu kungase kubhekiswe ngokuthi "ukuhlanganiswa kabili." Ngenxa yokungaqondakali, ukuhlukaniswa kwezinto kuvamile.
- Isikhumba esikhanyayo esingase sibe mnandi noma si-velvet-like ekuthunjweni.
- Isikhumba esinesikhumba: Isikhumba singabhuqa kalula futhi kaningi kunzima ukuguqula (ukugxila). Ukwehlukanisa nakho kunamathuba amaningi okuholela ekubukeni.
Izinhlobo ze-Ehlers-Danlos Syndrome
Kunezinhlobo eziyisithupha eziyinhloko ze-Ehlers-Danlos syndrome, ezinye zazo zihlehliwe futhi zingaphezulu kwezinye izifo ezihlukahlukene. I-subtype ejwayelekile kunazo zonke ye-EDS iwukungaqondakali, futhi ngokuyinhloko ithinta amalunga. I-subtypes engathà sina kakhulu ihlanganisa "isifo se-vascular" lapho imithwalo yegazi ingabhidliza, ngezinye izikhathi imiphumela emibi. Ngenhlanhla, lezi zinguquko ezimbi kakhulu azivamile. Ngenkathi ukunyundela okulula kulula kakhulu kwi-subtypes ye-vascular, kungase kwenzeke nganoma yiluphi uhlobo lwe-EDS.
Izinto Abafundisi Okudingeka Bayazi
Kunezinto eziningana ezibalulekile ukuthi othisha kufanele bazi ukuze kusize ingane ene-Ehlers-Danlos syndrome ihlale iphephile futhi iphumelele. Sizokukhuluma ngamaphuzu ajwayelekile uma unomntwana onama-EDS ekilasini lakho, kodwa kubalulekile ukuhlala nabazali bomntwana futhi ufunde mayelana nokukhathazeka kwabo. Yonke ingane ene-EDS ihlukile, futhi abazali bangase babe nokukhathazeka okuqondile okungaxhunywanga ngolwazi jikelele mayelana nesifo. Yini okufanele ukwazi ngezingane ezine-EDS?
Ezinye izinto zomzimba zingaba yingozi
Imisebenzi yenyama ingaba yingozi ngenxa kokubili ukungaqondakali kanye nesikhumba esibucayi. Eminye imisebenzi engokomzimba kufanele igwenywe njengamajoyini angalungile angafaka lezi zingane engozini yokuxoshwa.
Imisebenzi engase ibe nomphumela wokuhlukanisa ihlanganisa ukuxhumana kwezemidlalo kanye nalabo abangela ukuphoqa noma ukuguqa ngokushesha, njengemidlalo ye-racquet. Ngisho nangaphansi kwesigatshana se-EDS, ubukhulu bezimpawu ziyahlukahluka, ngakho-ke kuyasiza ukubuza abazali bezingane ngemisebenzi ethile engase ihlangane nayo ekilasini lokudlala noma endaweni yokudlala.
Ukubhala Kungaba Nzima
Ngezinye izikhathi kulula ukukhohlwa ukuthi imisebenzi emihle ye-motor ingaba inselele njengemisebenzi yomzimba wonke. Ukubhala, ikakhulukazi, kungaba nzima kubantwana abane-EDS. Le nkinga yobuhlungu ngokusebenzisa ipeni noma ipensela, ibuye ithinte ikhono lomntwana lokuthayipha amanothi, ukubhala izinhlobonhlobo, noma ukuhlala ngokusheshisa ekuhlolweni.
Kunezinto eziningi othisha abangayenza ukuze basize izingane zihlushwa isandla nobuhlungu besandla ngenxa yokubhala. Ngezinye izikhathi kungase kube lula njengokungeza ipeni. Kwezinye izingane, ukuthayipha kwincwadi noma i-iPad kungase kube lula kunokubhala. Enye indlela eye yasiza ezinye izingane ukuthi zinikeze umthengisi wezinothi; kungaba umfundi ozimisele ukuthatha amanothi noma amanothi ukuthi uthisha unganikeza.
Uhlobo lokubhala lungenza umehluko futhi, futhi ngezinye izikhathi ukunyathelisa noma i-cursive kulula. Ukubuyela emuva naphakathi kwazo, noma kunjalo, kungabonisa inselelo.
Okubaluleke kakhulu, mhlawumbe, ukuvumela ingane isikhathi esengeziwe esidingekayo ukuba ubhale ngenkathi uhlolwa noma ugcwalisa umsebenzi wesikole ekhaya.
Ukungavumeli Okuvamile Kungenzeka
Izingane ezine-EDS zivame ukungabi khona isikhathi eside, kungakhathaliseki ukuthi zibuhlungu obungapheli, ukulimala, noma ukukhathala okuvame kakhulu. Ukuphazamiseka kwezifo zokuphuza ukulala kungavamile , okuthinta cishe ingxenye yesithathu yabantwana abane-EDS, futhi uma kungelashwa kungabangela ukukhathala okwedlulele kakhulu emini. Kuwusizo kakhulu ukusebenza nabazali bengane ukuyigcina esesikhathini izabelo ngenkathi esekhaya.
Izinyembezi Nezikhumba Zesikhumba Zivamile
Emphakathini lapho manje sibheke khona kakhulu ukutholakala kokuhlukunyezwa kwezingane, kubalulekile ukuqonda ukuthi ukulimaza kanye nezinyembezi zesikhumba zivamile ezinganeni ezine-EDS. Uma unomntwana ekilasini futhi uzizwe ukhathazekile ngokubona izidakamizwa noma izinyembezi zesikhumba, khumbula ukuthi okungenzeka ukuthi mayelana nengane ngaphandle kwe-EDS kungase kuvamile kwengane ene-EDS.
Izincwadi Zinzima
Inselele evamile yezingane ezine-EDS ithwala izincwadi ezinzima nakusesikoleni. Izincwadi zinzima! Kukhona izixazululo eziningana ezingasiza ngalokhu. Ngezinye izikhathi, ukuhlinzeka ingane ngeqoqo lezincwadi ukuhlala ekhaya ngaphezu kwesethi esikoleni kunganciphisa lokhu okukhathazayo. Uma kunesidingo sokuba ingane ithwale izincwadi phakathi kwamakilasi, ungabela ingane ukuba ibasize ukusiza. Ukusebenzisa inguqulo ye-intanethi yencwadi yinye enye inketho.
Ukuxoxa ngokuxilongwa nabanye abafundi
Izingane ziyazibuza futhi zivame ukuba nemibuzo mayelana nomfundi ongeke ahlanganyele emisebenzini ethile noma adinga usizo olukhethekile (njengesikhathi esiningi sokuqeda ukuhlolwa). Ngaphambi kokuba ukhulume nabanye abafundi, qiniseka ukuthi ubuza abazali bengane yakho ukuthi yini ekhululekile ngayo ngokuhlanganyela kwakho. Abazali abaningi bayakwazisa isenzo sokuletha izingane zakubo esikoleni ukuba zihambele uma nje zenziwa ngendlela elula futhi elula. Buza ingane futhi ukuthi yini ayithandayo. Ezinye izingane azifuni ezinye izingane zikwazi ukuthi "zihlukile" futhi kubalulekile ukuyihlonipha lokho. Ezinye izingane, ngokuphambene, zingakhululeka uma uvumela ezinye izingane ukuthi zikwazi ukuthi ziyini.
Qaphela Izidingo Zengane Zomzwelo
I-EDS ingabangela ukucindezeleka okukhulu ngokomzwelo ezinganeni, futhi ukulinganiselwa esikoleni kunganezela kulokhu kuhlupheka. Khuluma nabazali bomntwana mayelana nanoma yikuphi ukukhathazeka okukhethekile abanakho. Uma ingane ene-EDS ishiyekile kumsebenzi, cabanga ngezindlela zokufaka esikhundleni sesici sezenhlalo zalowo msebenzi ngenye into. Buza ukuthi yini eye yasiza ingane ukuthi ihileleke futhi iyingxenye yeqembu ngaphandle kweklasi.
Ukuxhumana Okuvulekile Kuyadingeka
Ukukhulumisana okuvulekile phakathi kwekhaya nokufunda kubaluleke kakhulu kwengane ene-EDS. Lezi zingane zidinga bonke abantu abadala ekusebenzeni kwabo ndawonye. Uma unemibuzo noma ungaqiniseki, kungcono kakhulu ukubuza.
Izwi elivela
I-Ehlers-Danlos syndrome yinkimbinkimbi yezimo ezibandakanya ukungaxhumani (amalunga okuxekethile), isikhumba esibucayi, futhi ngezinye izikhathi ezinye izinkinga. Uma uzoba nengane nge-EDS ekilasini, kubalulekile ukusebenza eduze nabazali bakhe ukuthola izindlela zokumsiza ukuba bobabili baphumelele futhi baphephile. Ngenhlanhla, izinyathelo ezilula ezifana nokugwema imidlalo yokuxhumana, ukunikeza isikhathi esengeziwe lapho kubhala ubuhlungu, futhi kusiza ingane ukuba ihlale isifundo sayo naphezu kokungabikho, ingahamba isikhathi eside ekuqinisekiseni kokubili ukuphepha nokuphumelela kwayo esikoleni.
Njengombhalo wokugcina, uma uqaphela ukuthi ingane ekilasini lakho ibonakala sengathi ikwazi ukungena kalula futhi inezici ezibalulwe ngaphambili, khuluma nabazali bomntwana. I-EDS kulinganiselwa ukuthi iyathinta abantu abangu-50 000 e-United States, kanti amaphesenti angu-90 alaba bantu ayenakutholakali kuze kube yilapho enesidingo esiphuthumayo sezokwelapha esidinga ukunakwa.
> Imithombo:
> De Baets, S., Vanhalst, M., Coussens, M. et al. Ithonya lika-Ehlers-Danlos Syndrome-Uhlobo lwe-Hypermobility, ku-Motherhood: Isifundo se-Hermeneutical Phenomenological. Ucwaningo Lokukhubazeka Kwentuthuko . 2017. 60: 135-144.
> Kliegman, uRobert M., uBonita Stanton, uSt Geme III uJoseph W., uNine Felice. Schor, uRichard E. Behrman, noWaldo E. Nelson. UNelson Bookbook of Pediatrics. I-20th Edition. Philadelphia, PA: Elsevier, 2015. Phrinta.