Wake waphawula ukuthi amalunga akho agoba kakhulu kunabangane bakho, noma ukuthi welula kancane kunabangane bakho? Noma uthola ukulimala okukhulu uma ushaya indawo encane? Nakuba ungase ucabange ukuthi lezi zinto zivamile, kungenzeka ukuthi kungenxa yesimo esingakazwa okuningi ngaso esibizwa ngokuthi i-Ehlers-Danlos Syndrome (EDS). Ungakhathazeki, ake sixoxe ngakho ngendlela elula.
Kalula nje, iyini i-Ehlers-Danlos Syndrome (EDS)?
I-Ehlers-Danlos Syndrome (EDS) yisimo sezakhi zofuzo esithinta imizimba yethu. Sibangela ukuba izicubu ezixhumanisayo ezibamba imizimba yethu ndawonye zibe buthaka. Cabanga ngayo njengeglue ebamba izinto ezifana namathambo ethu, i-cartilage, negazi ndawonye. Kumuntu one-EDS, le glue ibuthakathaka.
Lokhu kungabangela ukuthi amalunga akho akhululeke, isikhumba sakho sibe sincane futhi siphuke kalula, futhi ngezinye izikhathi ngisho nemithambo yegazi yakho kanye nezitho zangaphakathi zibe buthakathaka. Nakuba okwamanje kungekho ikhambi lalokhu, ungakwazi ukuphatha izimpawu zakho kahle futhi uphile impilo evamile.
Yiziphi izinhlobo eziyinhloko ze-EDS?
Iqanjwe ngodokotela ababili abaqale ukuchaza lesi sifo, u-Ehlers noDanlos. Okwamanje kunezinhlobo eziyinhloko ezingu-13 zalesi sifo. Nakuba uhlobo ngalunye luhlukile kancane, zonke zinembangela efanayo: ubuthakathaka bamalunga nesikhumba. Ake sibheke izinhlobo eziyinhloko.
| Uhlobo lwe-EDS | Izici eziyinhloko kanye nencazelo |
|---|---|
| I-Hypermobile Ehlers-Danlos syndrome (hEDS) | Lolu uhlobo oluvame kakhulu. Amalunga agobeka kakhulu. Lokhu kungaholela ekuqhekekeni nasekukhumuleni njalo. Kungabangela nobuhlungu bemisipha namathambo isikhathi eside. |
| I-Classical Ehlers-Danlos syndrome (cEDS) | Kulolu hlobo, isikhumba sibushelelezi kakhulu , sinwebeka kakhulu, futhi sithambile kakhuluIsikhumba esisemadolweni nasezindololwaneni siyalimala kalula futhi sibe nezibazi. Amalunga aqhekekile, izinyawo ezisicaba, kanye nezinkinga ze-valve yenhliziyo nazo zingaba khona. |
| I-Vascular Ehlers-Danlos syndrome (vEDS) | Lolu uhlobo olungathí sina kangako, kodwa olungavamile kakhulu. Kulesi simo, inethiwekhi yemithambo yegazi yomzimba iba buthaka, okubeka imithambo yegazi kanye nezitho zangaphakathi (isib. amathumbu) engcupheni yokuqhekeka. |
| Ezinye izinhlobo ezingavamile | Kunezinye izinhlobo ezingandile, njenge-Kyphoscoliotic (kEDS) kanye ne-Arthrochalasia (aEDS). Lezi zingaba nezici ezithile ezifana ne-scoliosis, ukukhumuka kwesinqe ngesikhathi sokuzalwa, kanye nezinkinga zamehlo. |
Yiziphi izimpawu ezivamile ze-EDS?
Izimpawu zingahluka kuye ngokuthi uluhlobo luni lwe-EDS onalo, kodwa lezi ezinye zezimpawu ezivamile abantu abaningi ababhekana nazo:
- Amalunga aguquguquka kakhulu: Cabanga nje uma ungagoba uzwane lwakho olukhulu bese uluthinta ngaphansi kwesandla sakho, noma uma ungagoba amadolo akho emuva, lokho kuyisibonakaliso salokhu.
- Isikhumba esithambile: Ungakwazi yini ukwelula isikhumba sakho sisuke emzimbeni wakho bese usivumela sihambe, bese sibuyela endaweni yaso njengebhande lerabha? Isikhumba singase sizizwe sithambile kakhulu , njenge-velvet.
- Ukuphuka kalula: Isikhumba sibuthakathaka kakhulu . Ngisho neqhubu elincane lingabangela ukuphuka okukhulu, lishiye izibazi, futhi lithathe isikhathi eside ukuphola.
Into ebalulekile ukuthi, ungacabangi ukuthi une-EDS ngoba nje unesinye noma ezimbili zalezi zimpawu. Kodwa uma unezinye zalezi zimpawu, kungcono ukukhuluma nodokotela.
Ezinye izici ezibonakalayo
Ngaphezu kwalezi zici eziyinhloko, ungabona nezinto ezifana nalezi:
- Izinkinga zamazinyo (amazinyo agobile, izinsini eziphuma igazi)
- Ubuhlungu bamalunga
- Ukuzizwa ukhathele ngisho nangemva kokulala kahle
- Inkinga yokugxila
- Ikhanda elibuhlungu
- Izinyawo ezisicaba
- Ubuthakathaka bemisipha, ikakhulukazi uma kubanda
- Ubunzima bokulawula umchamo
- Isiyezi
- Izinkinga zesistimu yokugaya ukudla ezifana nokuqunjelwa kanye ne-gastritis
Izimpawu ezingabonakala ezinganeni ezincane
Uma ezinye izingane zine-EDS, ungase ubone nezinto ezithile ekukhuleni kwazo.
- Ukuphuza amakhono okunyakaza komzimba njengokuhlala, ukuma nokuhamba.
- Ukungabi nobude noma isisindo esifanele iminyaka.
- Kwezinye izinhlobo ezingavamile, izici ezithile zobuso (amehlo amakhulu, isilevu esincane, impumulo encane) zingabonakala.
Kungani kwenzeka i-EDS?
Kalula nje, i-EDS yenzeka lapho iphrotheni ebizwa ngokuthi i-collagen emzimbeni wethu ingakhiqizwa kahle. I-Collagen, njengoba ngishilo ekuqaleni, "inhlama" ebamba amathambo ethu, isikhumba, kanye nezitho zomzimba ndawonye. Lapho amandla ale nhlama ehla, konke okuxhunyiwe kuba buthakathaka futhi kungasebenzi kahle.
I-EDS iyisifo esibangelwa ufuzo . Lokhu kusho ukuthi singadluliselwa kusuka kubazali siye ezinganeni. Uma umama noma ubaba wakho enalesi simo, nawe unethuba elikhulu lokusithola. Kodwa-ke, ngezinye izikhathi, umuntu omusha angaba nalesi simo ngaphandle kokuba nanoma ubani emndenini abe naso.
Udokotela uhlonza kanjani lokhu?
Uma uya kudokotela ngalezi zimpawu, uzoqala ngokukuhlola ngokomzimba.
- Ukuhlolwa kwamalunga: Lokhu kuzohlola ukuthi ungawagoba kangakanani amadolo akho, izindololwane, neminwe. Ungakwazi yini ukuthinta isithupha sakho ngaphansi kwesandla sakho? Ungakwazi yini ukugoba umunwe wakho omncane ngaphezu kwama-degree angu-90?
- Ukuhlolwa kwesikhumba: Kuhlola ukuqina kwesikhumba, ukuklwebheka, kanye nezibazi.
- Umlando womndeni: Uzobuzwa ukuthi wena noma omunye umuntu emndenini wakho uke waba nalezi zimpawu ngaphambili.
Esikhathini esiningi, udokotela angathola umbono kulolu vivinyo kuphela, kodwa ngezinye izikhathi kungadingeka ukuhlolwa okwengeziwe ukuqinisekisa isimo.
Ukuhlolwa kokuqinisekisa
- Ukuhlolwa kwezakhi zofuzo: Kungathathwa isampula yegazi ukuze kubonwe ukuthi kukhona yini izinguquko ezithile zezakhi zofuzo ezibangela i-EDS.
- I-Echocardiogram: Uma kukhona ukusolakala kwenkinga ngenhliziyo noma imithambo yegazi, lokhu kuskena okungenabuhlungu kungenziwa ukuhlola ukusebenza kwenhliziyo.
- I-CT scan noma i-MRI scan: Lezi zinhlobo zokuskena zingadingeka ukuze kubonwe ukuthi kukhona yini umphumela emgogodleni, emithanjeni, noma ezithweni zangaphakathi.
- I-biopsy yesikhumba: Kuthathwa ingxenye encane yesikhumba bese ihlolwa ngaphansi kwe-microscope ukuze kuhlolwe ukukhubazeka kwe-collagen.
Iphathwa futhi iphathwa kanjani?
Uma usuthole ukuthi yiluphi uhlobo lwe-EDS onalo, ungakwazi ukulawula izimpawu ezihambisana nalo. Ungadinga usizo kochwepheshe abahlukahlukene ukuze wenze lokhu. Isibonelo:
- Udokotela Wamathambo
- Udokotela Wesikhumba
- Udokotela Wezifo Zamalunga
- Udokotela wenhliziyo
Izinketho zokwelapha zingafaka:
- Ukwelashwa ngokomzimba: Ukuzivocavoca umzimba kanye nokwelashwa ngokomzimba kubaluleke kakhulu ekuqiniseni imisipha kanye nokunciphisa ukuqina kwamalunga. Ukuzivocavoca okulula njengokuhamba nokubhukuda kuhle kakhulu.
- Ukwelashwa Komsebenzi: Kukufundisa amasu nemishini edingekayo ukuze wenze imisebenzi yansuku zonke kalula futhi ngaphandle kokulimaza umzimba wakho.
- Amadivayisi okusiza: Ukugqoka ama-braces amalunga, nokusebenzisa amadivayisi anjengesihlalo sabakhubazekile uma kudingeka.
- Ama-Painkiller: Ungathatha ama-painkiller owanikezwe udokotela wakho ngenxa yobuhlungu bamalunga.
- Ukuhlinzwa: Uma ezinye izindlela zokwelapha zingaphumeleli, kwenziwa ukuhlinzwa kokulungisa amalunga. Kodwa-ke, ngenxa yokuthi abantu abane-EDS bavame ukubambezeleka ukuphola kwenxeba, lokhu kubhekwa njengendlela yokugcina.
Izinto okufanele uzicabangele uma uhlala ne-EDS
I-EDS iyisimo esihlala isikhathi eside, ngakho-ke kubalulekile ukufunda ukuphila naso.
- Vikela isikhumba sakho: Sebenzisa insipho ethambile. Njalo faka isivikelo selanga uma uphuma elangeni. Gqoka ama-pads okuzivikela emadolweni nasezindololwaneni zakho.
- Gwema imidlalo ethinta kakhulu: Gwema ukugijima, ukugxuma, kanye nemidlalo yokuthintana. Gwema ukuphakamisa izinto ezisindayo.
- Nakekela amazinyo akho: Sebenzisa ibhulashi lamazinyo elinezinwele ezithambile.
- Impilo yengqondo: Ukuphila nalesi simo kungaba yinto ekhathazayo ngokomzwelo, ngakho funa usizo kumeluleki noma ujoyine iqembu lokusekelana nabantu abanomqondo ofanayo.
Uma ucabanga ukuqala umndeni, ungacela usizo kumeluleki wezakhi zofuzo ukuze ufunde ngengozi yakho yokuba nomntwana ozuza lesi simo njengefa.
Umlayezo Wokuya Nawe Ekhaya
- I-Ehlers-Danlos Syndrome (EDS) yisimo sofuzo esenza buthaka izicubu zomzimba ezixhumeneyo.
- Izimpawu eziyinhloko ukugoba kakhulu kwamalunga, ukwelula isikhumba, kanye nokulunywa kalula.
- Nakuba kungekho ikhambi eliphelele lalokhu, izimpawu zingalawulwa kahle ngokwelashwa ngokomzimba, imithi, kanye nokushintsha indlela yokuphila.
- Uma unalezi zimpawu, ungesabi ukubona udokotela ukuze akunike iseluleko. Ukuxilongwa nokuphathwa ngendlela efanele kuyisihluthulelo sempilo enempilo.
- Ungaphila impilo evamile ngezinhlobo eziningi ze-EDS. Into ebaluleke kakhulu ukusebenzisana eduze nethimba lakho lezokwelapha.
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