Ngaba wakha waphawula ukuba amalungu akho agobile ngaphezu kwabahlobo bakho, okanye ukuba uyolula kancinci ngaphezu kwabahlobo bakho? Okanye ngaba ufumana imivumbo emikhulu xa ufika kwindawo encinci? Nangona usenokucinga ukuba ezi zinto ziqhelekile, kusenokwenzeka ukuba kungenxa yemeko esingazivanga kangako ngayo ebizwa ngokuba yi-Ehlers-Danlos Syndrome (EDS). Ungakhathazeki, masithethe ngayo ngendlela elula.
Ngamafutshane, yintoni i-Ehlers-Danlos Syndrome (EDS)?
I-Ehlers-Danlos Syndrome (EDS) yimeko yemfuza echaphazela imizimba yethu. Ibangela ukuba izicubu ezinxibelelanayo ezibamba imizimba yethu kunye zibe buthathaka. Cinga ngayo njengeglu ebamba izinto ezifana namathambo ethu, i-cartilage, kunye negazi kunye. Kumntu one-EDS, le glu ibuthathaka.
Oku kunokubangela ukuba amalungu akho akhululeke, ulusu lwakho lube luncinci kwaye luqhekeke lula, kwaye ngamanye amaxesha nemithambo yegazi yakho kunye namalungu angaphakathi abe buthathaka. Nangona okwangoku kungekho nyango loku, ungazilawula kakuhle iimpawu zakho kwaye uphile ubomi obuqhelekileyo.
Ziziphi iintlobo eziphambili ze-EDS?
Ithiywe ngamagama oogqirha ababini abaqala ukuchaza esi sifo, uEhlers noDanlos. Okwangoku kukho iintlobo eziphambili ezili-13 zesifo. Nangona uhlobo ngalunye lwahlukile kancinci, zonke zinesizathu esifanayo: ubuthathaka bamalungu nolusu. Makhe sijonge iintlobo eziphambili.
| Uhlobo lwe-EDS | Iimpawu eziphambili kunye nenkcazo |
|---|---|
| I-Hypermobile Ehlers-Danlos syndrome (hEDS) | Olu lolona hlobo luxhaphakileyo. Amalunga agobeka kakhulu. Oku kunokubangela ukukruquka rhoqo nokukhubeka. Kunokubangela neentlungu zemisipha namathambo ixesha elide. |
| Isifo se-Classical Ehlers-Danlos (cEDS) | Kule hlobo, ulusu lugudileyo kakhulu , luthambile kakhulu, kwaye luthambile kakhuluUbuthathaka. Ulusu olusemadolweni nasezingqinibeni lunokulimala lula kwaye lunamanxeba. Amalungu aqhekekileyo, iinyawo ezisicaba, kunye neengxaki zevalvu yentliziyo nazo zinokubakho. |
| Isifo seVascular Ehlers-Danlos (vEDS) | Olu luhlobo olungelubi kangako, kodwa olungaqhelekanga. Kule meko, inethiwekhi yemithambo yegazi yomzimba iba buthathaka, nto leyo ebeka imithambo yegazi kunye namalungu angaphakathi (umz., amathumbu) emngciphekweni wokuqhekeka. |
| Ezinye iintlobo ezinqabileyo | Kukho ezinye iintlobo ezingaqhelekanga, ezifana neKyphoscoliotic (kEDS) kunye neArthrochalasia (aEDS). Ezi zinokuba neempawu ezithile ezifana ne-scoliosis, ukukhubeka kwesinqe ngexesha lokuzalwa, kunye neengxaki zamehlo. |
Ziziphi iimpawu eziqhelekileyo ze-EDS?
Iimpawu zingahluka ngokuxhomekeke kuhlobo lwe-EDS onayo, kodwa nazi ezinye zeempawu eziqhelekileyo abantu abaninzi abazifumanayo:
- Amalungu aguquguquka kakhulu: Khawuthelekelele ukuba ungagoba uzwane lwakho olukhulu uze uluchukumise ngaphantsi kwesandla sakho, okanye ukuba ungagoba amadolo akho ngasemva, olo luphawu lwale nto.
- Ulusu oluthambileyo: Ngaba ungalususa ulusu lwakho emzimbeni wakho uze uluyeke, luze lubuyele endaweni yalo njengebhanti yerabha? Ulusu lusenokuvakala luthambile kakhulu , njengevelvet.
- Ukugruzuka lula: Ulusu lubuthathaka kakhulu . Nokuba liqhuma elincinci linokubangela ukugruzuka okukhulu, amanxeba, kunye namanxeba athatha ixesha elide ukuphola.
Into ebalulekileyo kukuba, musa ukucinga ukuba une-EDS kuba nje unenye okanye ezimbini zezi mpawu. Kodwa ukuba unezinye zezi mpawu, kungcono ukuthetha nogqirha.
Ezinye iimpawu ezibonakalayo
Ukongeza kwezi mpawu ziphambili, ungabona nezinto ezifana nezi:
- Iingxaki zamazinyo (amazinyo agobileyo, iintsini eziphuma igazi)
- Intlungu yamalungu
- Ndiziva ndidiniwe nangona ndilele kakuhle
- Ingxaki yokugxila
- Intloko ebuhlungu
- Iinyawo ezithe tyaba
- Ubuthathaka bemisipha, ingakumbi xa kubanda
- Ubunzima bokulawula umchamo
- Isiyezi
- Iingxaki zenkqubo yokugaya ukutya ezifana nokudumba kunye ne-gastritis
Iimpawu ezinokubonwa kubantwana abancinci
Ukuba abanye abantwana bane-EDS, unokubona nezinto ezithile ekukhuleni kwabo.
- Ukulibaziseka kwizakhono zomzimba ezifana nokuhlala, ukuma nokuhamba.
- Ukungabi nobude okanye ubunzima obufanele ubudala.
- Kwezinye iintlobo ezingaqhelekanga, iimpawu ezithile zobuso (amehlo amakhulu, isilevu esincinci, impumlo ebhityileyo) zinokubonakala.
Kutheni i-EDS isenzeka?
Ngamafutshane, i-EDS yenzeka xa iproteni ebizwa ngokuba yi-collagen emzimbeni wethu ingaveliswanga kakuhle. I-Collagen, njengoko benditshilo ngaphambili, yi-"glue" ebamba amathambo ethu, ulusu, kunye namalungu omzimba kunye. Xa amandla ale glue ehla, yonke into edibeneyo iba buthathaka kwaye ingasebenzi kakuhle.
I-EDS sisifo esibangelwa yimfuza . Oku kuthetha ukuba sinokudluliselwa kubazali ukuya ebantwaneni. Ukuba umama okanye utata wakho unesi sifo, nawe unethuba elikhulu lokuba naso. Nangona kunjalo, ngamanye amaxesha, umntu omtsha unokuba naso ngaphandle kokuba nabani na kusapho abe naso.
Ugqirha uyixilonga njani le nto?
Xa usiya kugqirha malunga nezi mpawu, uya kuqala enze uvavanyo lomzimba.
- Uvavanyo lwamalungu: Oku kuya kujonga ukuba ungagoba amadolo akho, iingqiniba, kunye neminwe yakho kangakanani. Ngaba ungachukumisa ubhontsi wakho ngaphantsi kwesandla sakho? Ngaba ungagoba umnwe wakho omncinci ngaphezu kwee-degrees ezingama-90?
- Ukuhlolwa kolusu: Kujonga ukuba ulusu luqinile, lunamanxeba, kwaye alunazibazi.
- Imbali yosapho: Uza kubuzwa ukuba wena okanye nabani na kusapho lwakho ukhe waba nezi mpawu ngaphambili.
Uninzi lwexesha, ugqirha unokufumana umbono kolu vavanyo kuphela, kodwa ngamanye amaxesha kunokufuneka iimvavanyo ezingaphezulu ukuqinisekisa imeko.
Uvavanyo lokuqinisekisa
- Uvavanyo lwemfuza: Isampuli yegazi ingathathwa ukuze kubonwe ukuba kukho utshintsho oluthile lwemfuza olubangela i-EDS.
- I-Echocardiogram: Ukuba kukho isikrokro sokuba kukho ingxaki entliziyweni okanye kwimithambo yegazi, olu vavanyo lungenziwa ngaphandle kwentlungu ukujonga ukusebenza kwentliziyo.
- I-CT scan okanye i-MRI scan: Olu hlobo lwe-scan lunokufuneka ukuze kubonwe ukuba kukho nayiphi na impembelelo kumqolo, kwimithambo-luvo, okanye kwizitho zangaphakathi.
- I-biopsy yolusu: Kuthathwa iqhekeza elincinci lolusu lize lihlolwe phantsi kwe-microscope ukujonga iingxaki kwi-collagen.
Iphathwa kwaye ilawulwa njani?
Wakuba uchongile ukuba loluphi uhlobo lwe-EDS onalo, unokukwazi ukulawula iimpawu ezinxulumene nayo. Ungadinga uncedo kwiingcali ezahlukeneyo ukuze wenze oku. Umzekelo:
- Ugqirha wamathambo
- Ingcali yesikhumba
- Ingcali yeRheumatologist
- Ingcali yentliziyo
Iindlela zonyango zingabandakanya:
- Unyango lomzimba: Ukuzilolonga kunye nonyango lomzimba kubaluleke kakhulu ekuqiniseni izihlunu kunye nokunciphisa ukuqina kwamalungu. Ukuzilolonga okulula njengokuhamba nokudada kulungile kakhulu.
- Unyango lomsebenzi: Lukufundisa iindlela kunye nezixhobo ezifunekayo ukuze wenze imisebenzi yemihla ngemihla ngokulula nangaphandle kokulimaza umzimba wakho.
- Izixhobo zokuncedisa: Ukunxiba izixhasi zamalungu, nokusebenzisa izixhobo ezifana nesitulo esinamavili ukuba kuyimfuneko.
- Iipilisi zokubulala iintlungu: Ungathatha iipilisi zokuphelisa iintlungu ezichazwe ngugqirha wakho xa unesifo samalungu.
- Utyando: Ukuba ezinye iindlela zonyango aziphumeleli, kwenziwa utyando lokulungisa amalungu. Nangona kunjalo, kuba abantu abane-EDS badla ngokulibazisa ukuphola kwenxeba, oku kuthathwa njengenyathelo lokugqibela.
Izinto ekufuneka uziqwalasele xa uhlala ne-EDS
I-EDS yimeko ehlala ixesha elide, ngoko ke kubalulekile ukufunda ukuphila nayo.
- Khusela ulusu lwakho: Sebenzisa isepha ethambileyo. Soloko ufaka i-sunscreen xa uphuma elangeni. Nxiba ii-protective pads emadolweni nasezingqinibeni zakho.
- Kuphephe imidlalo echaphazela kakhulu: Kuphephe ukubaleka, ukutsiba, kunye nemidlalo echukumisayo. Kuphephe ukuphakamisa izinto ezinzima.
- Lumka amazinyo akho: Sebenzisa ibhrashi yamazinyo eneenwele ezithambileyo.
- Impilo yengqondo: Ukuphila nale meko kunokuba nzima ngokweemvakalelo, ngoko funa uncedo kumcebisi okanye ujoyine iqela lenkxaso elinabantu abacinga njengawe.
Ukuba ucinga ngokuqalisa usapho, ungacela uncedo kumcebisi wezemfuza ukuze ufunde ngomngcipheko wokuba nomntwana oza kuzuza esi sifo njengelifa.
Umyalezo Wokuya Ekhaya
- I-Ehlers-Danlos Syndrome (EDS) yimeko yemfuza ebangela ukuba izicubu zomzimba ezidityanisiweyo zibe buthathaka.
- Iimpawu eziphambili kukugoba kakhulu kwamalungu, ukolula ulusu, kunye nokukrweleka lula.
- Nangona kungekho nyango lupheleleyo loku, iimpawu zinokulawulwa kakuhle ngonyango lomzimba, amayeza, kunye notshintsho kwindlela yokuphila.
- Ukuba unale mpawu, ungoyiki ukubona ugqirha ukuze akunike ingcebiso. Ukuxilongwa ngokuchanekileyo kunye nolawulo zizinto ezibalulekileyo ebomini obusempilweni.
- Ungaphila ubomi obuqhelekileyo ngeentlobo ezininzi ze-EDS. Eyona nto ibalulekileyo kukusebenzisana ngokusondeleyo neqela lakho lezonyango.
💬 Comments (0)
Akukho zimvo zithunyelweyo okwangoku. Faka uluvo lwakho apha okokuqala.
Faka uluvo lwakho