Wake wazizwa sengathi amalunga akho aguquguquka kakhulu kunezinye? Mhlawumbe ungagoba iminwe yakho emuva ngendlela engavamile, noma isikhumba sakho sizizwe sinwebekile kakhulu kunokujwayelekile. Nakuba lokhu kungase kubonakale sengathi yizinto ezivamile, ngezinye izikhathi kungabangelwa yisimo sofuzo esibizwa ngokuthi i-Ehlers-Danlos Syndrome (EDS). Ungakhathazeki, lokhu kuyinto abantu abaningi abangakaze bayizwe, ngakho namuhla sizoxoxa ngayo ngendlela elula ongayiqonda.
Kalula nje, iyini i-Ehlers-Danlos Syndrome (EDS)?
Cabanga ngemizimba yethu njengesakhiwo esenziwe ngezitini. Lezi zitini (okungukuthi, izitho zomzimba wethu, amathambo, kanye nesikhumba) zihlanganiswa ngodaka. Ngokufanayo, 'udaka' oluhlanganisa izingxenye zomzimba wethu futhi luzigcine ziqinile lubizwa ngokuthi izicubu ezixhumeneyo . Lezi zitholakala yonke indawo emathanjeni ethu, emathanjeni, esikhumbeni, nasemithanjeni yegazi.
I-Ehlers-Danlos Syndrome (EDS) yisifo sofuzo esibangela ukuba izicubu ezixhumeneyo zibe buthaka. Imbangela eyinhloko ukuntuleka kwe-collagen, iphrotheni ebalulekile ekuqineni kwezicubu ezixhumeneyo. Kufana nengxube ye-mortar engenasimende. Lokhu kubangela amalunga axegayo, isikhumba esinwebeka kakhulu, imihuzuko kalula, futhi ngezinye izikhathi ngisho nemithambo yegazi nezitho zangaphakathi zibe buthaka.
Lesi yisifo esibangelwa izakhi zofuzo esitholakala emindenini. Kodwa-ke, akukho ukwelashwa kwaso okuqondile okwamanje. Kodwa into engcono kakhulu ukukwazi ukulawula nokuphatha izimpawu bese uphila impilo ejwayelekile.
Yiziphi izinhlobo eziyinhloko ze-EDS?
I-EDS iqanjwe ngodokotela ababili abayichaze okokuqala. Okwamanje kunezinhlobo zayo eziyinhloko ezingu-13. Nakuba uhlobo ngalunye luhlukile kancane, zonke zinembangela efanayo: ubuthakathaka bamalunga nezakhiwo zesikhumba. Ake sibheke izinhlobo ezivame kakhulu.
| Uhlobo lwe-EDS | Incazelo |
|---|---|
| I-Hypermobile EDS (hEDS) | Lolu uhlobo oluvame kakhulu . Amalunga aguquguquka kakhulu. Lokhu kungaholela ekuqhekekeni nasekucindezelekeni njalo. Kungabangela nobuhlungu bemisipha namathambo isikhathi eside. |
| I-EDS yakudala (cEDS) | Kulolu hlobo, isikhumba sincane kakhulu , siyanwebeka, futhi sithambile. Isikhumba ezindaweni ezifana namadolo nezindololwane siyaphuka kalula futhi kwakheka izibazi. Ukuvuvukala kwamalunga, izinyawo ezisicaba, kanye nezinkinga zevalvu yenhliziyo nakho kungavela. |
| I-Vascular EDS (vEDS) | Lolu uhlobo oluyingozi kakhulu futhi olungavamile . Kulesi simo, uhlelo lwemithambo yegazi luyaba buthaka. Ngakho-ke, kunengozi yokuthi imithambo yegazi nezitho zangaphakathi (isib. amathumbu, isibeletho) ziqhume/ziqhume. |
| Ezinye izinhlobo ezingavamile | Kunezinye izinhlobo ezingavamile, njenge-Kyphoscoliotic EDS (kEDS) kanye ne-Arthrochalasia EDS (aEDS), ezibonakala ngokugoba komgogodla, ukuhlukana kwesinqe ngesikhathi sokuzalwa, kanye nesikhumba esithambile kakhulu. |
Yiziphi izimpawu ezivamile ze-EDS?
Izimpawu zingase zihluke kuye ngohlobo lwe-EDS onayo, kodwa lezi yizimpawu ezivamile abantu abaningi ababhekana nazo.
- Amalunga aguquguquka kakhulu: Isibonelo, ungase ukwazi ukugoba isithupha sakho usihlikihle ngemuva kwesandla sakho, noma ukugoba amadolo akho emuva. Abanye abantu bakubiza lokhu ngokuthi 'okuhlangene kabili'.
- Isikhumba esithambile: Isikhumba sakho singasuswa emzimbeni wakho, futhi uma usikhulula, sibuyela lapho sasikhona. Singaba bushelelezi kakhulu, njenge-velvet.
- Isikhumba esibuthakathaka: Isikhumba siphenduka sibe luhlaza okwesibhakabhaka futhi sibe nemihuzuko ngisho nangemva kokushaywa okuncane. Uma ulimala, kuthatha isikhathi eside ukuphola. Izibazi zakheka kalula.
Into ebalulekile ukuthi akuwona wonke umuntu onezimpawu ezilodwa noma ezimbili onazo i-EDS. Kodwa uma unezimpawu eziningana zalezi zimpawu ndawonye, kungcono ukubona udokotela bese ukhuluma naye.
Lokhu futhi kuvamile:
- Izinkinga zamazinyo (ukukhishwa kwamazinyo, ukuphuma kwegazi ezinsinini)
- Ubuhlungu bamalunga
- Ukuzizwa ukhathele kakhulu ngisho nangemva kokulala kahle
- Ubunzima bokugxila
- Ikhanda elibuhlungu
- Izinyawo ezisicaba
- Ubuthakathaka bemisipha, ikakhulukazi uma kubanda
- Ubunzima bokulawula umchamo
- Isiyezi
- Izinkinga zesistimu yokugaya ukudla, njengokuqunjelwa
Uma izingane zine-EDS, amakhono okunyakaza komzimba njengokuhamba nokuhlala angathinteka.Kungabambezeleka futhi ungase ungabi nobude obufanele iminyaka yakho.
Ungasithola kanjani lesi sifo?
Uma ubika izimpawu ezinjengalezi, udokotela wakho uzoqala akuhlole ngokucophelela.
- Bazobona ukuthi ungagoba kangakanani amadolo akho, izindololwane, nezinzwane.
- Bazohlola ukuthi isikhumba sakho sinwebe kangakanani nokuthi kukhona yini izibazi noma imihuzuko.
- Buza ukuthi kukhona yini emndenini wakho onalezi zimpawu.
Esikhathini esiningi, izinhlobo ezifana ne-hEDS zingabonakala ngalokhu kuhlolwa ngokomzimba kuphela. Kodwa-ke, ngezinye izikhathi kudingeka ukuhlolwa okwengeziwe ukuqinisekisa ukuxilongwa nokunquma uhlobo oluqondile.
- Ukuhlolwa kwezakhi zofuzo: Kungathathwa isampula yegazi ukuze kubonwe ukuthi kukhona yini ukuguquka kwezakhi zofuzo okubangela i-EDS.
- I-Echocardiogram: Ukuhlolwa kwamagagasi omsindo ukuhlola izinkinga zenhliziyo nemithambo yegazi.
- I-CT scan noma i-MRI scan: Lezi skeni zisiza ukubona isimo somgogodla noma izitho zangaphakathi.
- I-biopsy yesikhumba: Kuthathwa ingxenye encane yesikhumba bese ihlolwa ngaphansi kwe-microscope ukuze kuhlolwe ukukhubazeka kwe-collagen.
Ukwelashwa nokuphathwa
Uma usuthole ukuthi yiluphi uhlobo lwe-EDS onalo, ungakhuluma nodokotela wakho mayelana nendlela yokuphatha izimpawu zakho. Kungase kudingeke futhi ukuthi ubonane nochwepheshe abahlukene.
- Udokotela Wamathambo
- Udokotela Wesikhumba
- Udokotela Wezifo Zamalunga
Nazi ezinye zezindlela zokwelapha eziyinhloko:
- Ukwelashwa ngokomzimba: Lokhu kubaluleke kakhulu ukuqinisa imisipha nokuvimbela ukuqina kwamalunga. Ukuzivocavoca okungenamthelela omkhulu njengokuhamba nokubhukuda kuhle.
- Ukwelashwa Komsebenzi: Ungafunda ngamasu namadivayisi okwenza imisebenzi yansuku zonke ibe lula. Uzothola iseluleko sendlela yokunciphisa ukucindezeleka emalungeni akho.
- Amadivayisi okusiza: Ungadinga ama-braces ukuze uvimbele ukunyakaza kwamalunga noma isihlalo sabakhubazekile ukuze sikusize uzulazule.
- Ama-Painkiller: Uma uzwa ubuhlungu bamalunga, ungathatha ama-painkiller avamile noma, uma kudingeka, imithi enamandla oyinikezwe udokotela.
- Ukuhlinzwa: Ukuhlinzwa kusetshenziselwa ukulungisa amalunga avame ukuthinteka futhi angenakulawulwa ngezinye izindlela zokwelapha. Kodwa-ke, ngenxa yokuthi abantu abane-EDS bavame ukubambezeleka ukuphola kwenxeba, lokhu kubhekwa njengendlela yokugcina.
Izinto okufanele uzicabangele uma uhlala ne-EDS
Ukuphila ne-EDS kusho ukuthi kufanele unakekele umzimba wakho kakhulu. Lezi zinto zingakusiza ugweme izingozi.
- Gwema imidlalo enzima:Gwema ezemidlalo ezithinta umzimba kanye nokuzivocavoca okufaka ingcindezi enkulu emalungeni, njengokugijima.
- Ungaphakamisi izinsimbi: Ukuphakamisa izinsimbi kwandisa ingozi yokuqhekeka kwamalunga nokulimala.
- Vikela isikhumba sakho: Sebenzisa insipho ethambile. Faka umuthi wokuvikela ilanga nsuku zonke. Gqoka amaphedi okuvikela ezindaweni ezifana namadolo nezindololwane.
- Nakekela amazinyo akho: Sebenzisa ibhulashi lamazinyo elinezinwele ezithambile.
- Impilo yengqondo: Ukuphila nesimo sesikhathi eside esinjengalesi kungaba yinto ekhathazayo ngokomzwelo. Ukukhuluma nomeluleki noma ukujoyina iqembu lokusekelana nabantu abanomqondo ofanayo kungaba usizo olukhulu.
Uma ucabanga ukuqala umndeni, ungakhuluma nomeluleki wezakhi zofuzo ukuze uqonde ingozi yokudlulisela lesi sifo ezinganeni zakho.
Umlayezo Wokuya Nawe Ekhaya
- I-Ehlers-Danlos Syndrome (EDS) yisifo sofuzo esenza buthaka izicubu zomzimba ezixhumeneyo.
- Izimpawu eziyinhloko amalunga aguquguquka kalula, isikhumba esinwebekayo, kanye nokulunywa kalula.
- Nakuba kungekho ikhambi eliqondile lalokhu, izimpawu zingalawulwa ngempumelelo ngokwelashwa ngokomzimba, imithi, kanye nokushintsha indlela yokuphila.
- Uma usola ukuthi unalezi zimpawu, ungenzi izinqumo ezisekelwe ku-inthanethi, kodwa qiniseka ukuthi ubona udokotela wakho ukuze akunike iseluleko.
- Ungaphila impilo enempilo ngokusebenzisana eduze nodokotela wakho nokunakekela umzimba wakho.
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