Wake waphawula ukuthi amalunga akho agoba futhi anyakaza kakhulu kunabangani bakho? Noma uyalimala futhi uyalimala ngisho nalapho ufika endaweni encane? Ungase ucabange, "O... yileyo ndlela umzimba wami onjalo, bengilokhu nginje kusukela ngiseyingane." Kodwa lezi ngezinye izikhathi zingaba izimpawu zesimo esingakhulumi kakhulu ngaso, kodwa ngokuqinisekile okudingeka sazi ngaso. Namuhla sizokhuluma ngesinye salezo zimo, i-Ehlers-Danlos Syndrome, noma i-EDS ngamafuphi.
Kalula nje, iyini i-Ehlers-Danlos Syndrome (EDS)?
Cabanga ngomzimba wethu njengesakhiwo esakhiwe kahle. Konke okukulesi sakhiwo, okuhlanganisa izitini, izindonga, nophahla, kubanjwe ndawonye futhi kuqiniswe yi-samente. Ngokufanayo, izitho zomzimba wethu, amathambo, imisipha, kanye nesikhumba kuxhunyiwe, kusekelwa, futhi kuqiniswe yinethiwekhi ekhethekile yezicubu. Lezi zicubu ezixhumene sizibiza ngokuthi .
Iqhawe eliyinhloko lalesi zicubu ezixhumeneyo yiprotheni ebizwa ngokuthi i-collagen . Ifana nesamente. Le collagen yiyo enikeza amandla nokuzinza esikhumbeni sethu, emalungeni, nasemithanjeni yegazi.
Manje, nakhu okwenzekayo emzimbeni womuntu one-Ehlers-Danlos Syndrome (EDS): Kukhona ushintsho lwezakhi zofuzo endleleni umzimba wakhe odala ngayo le phrotheni ebizwa ngokuthi i-collagen. Ngakho-ke i-collagen ekhiqizwayo ayinamandla ngokwanele, njengesamente endala. Ngakho-ke kwenzekani? Kufana nokuthi isakhiwo sibuthakathaka, izicubu ezixhumene emzimbeni zibuthakathaka. Ngakho-ke kungathinta izindawo eziningi zomzimba.
- Igazi nemithambo yegazi
- Amathambo (amathambo)
- I-cartilage (izicubu ezibushelelezi phakathi kwamathambo)
- Amafutha
- Izihlanganisi (izihlanganisi)
- Imisipha
- Isikhumba
Ingabe zikhona izinhlobo eziyinhloko ze-EDS?
Yebo, i-EDS ayifani kuwo wonke umuntu. Lesi simo sihlukaniswe ngezinhlobo ezingu-13 eziyinhloko ngokusekelwe endleleni esithinta ngayo umzimba kanye nezimpawu esizibangelayo. Kodwa namuhla sizokhuluma ngezinye zezinhlobo ezivame kakhulu okufanele uziqaphele ngokukhethekile.
| Igama lohlobo lwe-EDS | Isingeniso esifushane |
|---|---|
| I-Hypermobile EDS | Lolu uhlobo oluvame kakhulu. Amalunga azo aguquguquka kakhulu futhi akhululekile. Azizwa sengathi 'avalelekile'. Amalunga avame ukwenza umsindo 'wokuchofoza' futhi angaqhekeka kalula. |
| I-EDS yakudala | Lokhu kufana nohlobo olungenhla, kodwa kuthinta isikhumba kakhulu kunamalunga. Isikhumba sincane kakhulu, sinjengerabha, futhi singadabula futhi silimaze kalula. |
| I-EDS efana neyakudala | Njengoba igama lisho, ifana kakhulu ne-Classical EDS, kodwa kunomehluko omncane ezimpawu. Udokotela kuphela ongaxilonga lezi. |
| I-EDS yenhliziyo ne-valvul | Lokhu kungathinta uhlelo lwenhliziyo nemithambo yegazi kanye nama-valve enhliziyo, kanye nokubanga izimpawu esikhumbeni nasemalungeni. |
| I-Vascular EDS | Lolu uhlobo olungavamile futhi oluyingozi. Luthinta imithambo yegazi nezitho zangaphakathi ngaphezu kwamalunga. Izindonga zazo zibuthakathaka futhi zingaqhuma noma ziqhekeke kalula. Lesi yisimo esidinga ukunakekelwa okuphuthumayo. |
Yiziphi izimpawu ezivamile ze-EDS?
Manje ungase ucabange, "Angazi ukuthi nami nginalokhu." Ake sibheke izimpawu ezivame kakhulu zalesi simo. Kodwa khumbula into eyodwa, ukuthi unesinye noma ezimbili zalezi zimpawu akusho ukuthi une-EDS . Lezi zimpawu zingabonakala nakwezinye izifo. Ngakho-ke, into engcono kakhulu ongayenza ukubona udokotela uma unokungabaza bese wenza ukuxilongwa okuqondile.
| Isibonakaliso | Kalula nje... |
|---|---|
| Amalunga e-Hypermobile | Amalunga agobeka kakhulu kunokujwayelekile. Abanye bawabiza ngokuthi 'ahlangene kabili'. Amalunga afana nehlombe, idolo, neminwe ahlala ehamba. |
| Isikhumba esithambile nesithambile | Isikhumba sibushelelezi kakhulu, njenge-velvet. Futhi njengebhola lenhlama ye-pizza, ungayilula ngendlela ofuna ngayo, bese ibuyela lapho yayikhona lapho uyidedela. |
| Isikhumba esibuthakathaka kanye nezibazi | Ngisho nesilonda esincane sithatha isikhathi eside ukuphola. Siba nezibazi kalula, futhi ngezinye izikhathi izibazi ziba zincane futhi zibonakale zishintsha umbala. |
| Ukuphuka kalula | Ngezinye izikhathi kuvela imivimbo eluhlaza okwesibhakabhaka emzimbeni ngisho noma ungashaywanga ndawo. Ngisho noma ungashaya endaweni ethile kancane, izophenduka ibe luhlaza okwesibhakabhaka. |
| Ubuhlungu bamalunga nemisipha | Kukhona ubuhlungu obungapheli, njengobuhlungu, emalungeni nasemisipheni. Lobuhlungu buyafika buphele. |
| Ukukhathala okungapheli | Ukuzizwa ukhathele futhi ungenampilo usuku lonke ngisho nangemva kokulala kahle. |
| Izinkinga zesistimu yokugaya ukudla | Ungase uzwe ubuhlungu esiswini, ukuqunjelwa, ukuqunjelwa, njll. Abanye abantu bangase babe nezimo ezifana ne-Irritable Bowel Syndrome (IBS). |
| Ingozi ye-Hernias | Ingozi ye-hernia iphakeme ngoba izicubu ezixhumeneyo ezizungeze imisipha zibuthakathaka. |
Yini ebangela i-EDS? Ingabe iyathelelana?
Cha, i-EDS akuyona into engadluliselwa kusuka komunye umuntu iye komunye . Yisimo esibangelwa izakhi zofuzo ngokuphelele. Okusho ukuthi, ibangelwa ushintsho lwezakhi zofuzo ezizakhini zethu zofuzo. Lokhu kuphazamiseka kwenzeka ezizakhi zofuzo ezisifundisa ukukhiqiza iphrotheni ye-collagen esikhulume ngayo ngaphambili.
Ochwepheshe bathole ukwehlukahlukana kwezakhi zofuzo okungaphezu kuka-20 okubangela i-EDS. Ukuhlukahluka kwezakhi zofuzo onazo kunquma uhlobo lwe-EDS kanye nezimpawu ozitholayo.
Ezinye izinhlobo ze-EDS zingazuzwa njengefa kubazali ziye ezinganeni. Lokhu kusho ukuthi uma noma yimuphi umzali enalesi simo, kungenzeka ukuthi nezingane nazo zizoba naso. Kodwa-ke, ezinye izinhlobo zingavela futhi ngokwesimo somzimba, ngaphandle komlando womndeni.
Uma othile emndenini wakho enalesi simo, noma uma unezimpawu ezifanayo, kubaluleke kakhulu ukukhuluma nodokotela futhi, uma kudingeka, uthole ukwelulekwa ngofuzo .
Yiziphi izinkinga ezingaba khona ze-EDS?
Inkinga evame kakhulu kulesi simo ukuhlukana kwezicubu . Lokhu kungaba yinto ebuhlungu kakhulu. Kukhona into ebaluleke kakhulu okudingeka siyikhumbule sonke lapha.
Uma uqhuma ilunga, ungalokothi uzame ukulinamathisela wena ngokwakho noma ucele omunye umuntu ukuba alifake! Lokhu kuzodala umonakalo owengeziwe elunganeni, ezicutshini ezizungezile, kanye nasezinzwa. Into engcono kakhulu ongayenza ukuya eMnyangweni Wezimo Eziphuthumayo wesibhedlela esiseduze (ETU) ngokushesha okukhulu.
Kwezinye izinhlobo ezinzima, njenge-vascular EDS, kungavela izinkinga ezingaba yingozi empilweni. Isibonelo, imithambo yegazi ingaqhuma, okubangela ukopha emzimbeni kanye nezimo ezibucayi ezifana nesifo sohlangothi .
Ezinye izinkinga zingase zihlanganise:
- I-Scoliosis
- Izinkinga ze-valve yenhliziyo
- Izinkinga zamazinyo nezinsini
- Izitho ezigobile
Ukwelashwa nokuphathwa kwe-EDS
Okokuqala, alikho ikhambi le-EDS okwamanje. Kodwa ungakhathazeki. Ungazilawula izimpawu zakho, uvimbele izinkinga, futhi uphile impilo evamile nekhwalithi. Umgomo oyinhloko wokwelashwa ukuphatha izimpawu zakho.
- Ukwelashwa ngokomzimba: Lokhu kubaluleke kakhulu. Ukuzivocavoca okuqinisa imisipha ezungeze amalunga kungasiza ekunciphiseni ukuqina kwamalunga nobuhlungu.
- Ukugqoka ama-braces akhethekile:Udokotela wakho angase ancome ama-braces akhethekile ukuze anikeze ukwesekwa okwengeziwe nokuvikela amalunga abuthakathaka.
- Ukunakekelwa okukhethekile kwesikhumba: Njengoba isikhumba sizwela kakhulu, kubalulekile ukusivikela ngokusebenzisa isivikelo selanga lapho uphuma elangeni futhi usebenzisa insipho ethambile, engacasuli.
Futhi, kungcono ukugwema izinto ezithile ezingalimaza amalunga.
- Xhumana nezemidlalo
- Ukuzivocavoca okunomthelela omkhulu (ukugijima, ukugxuma, kanye nezinye izivivinyo ezinomthelela omkhulu)
- Phakamisa izinsimbe ezisindayo
Lokhu akusho ukuthi awukwazi ukuzivocavoca nhlobo. Ungakhuluma nodokotela wakho mayelana nokuzivocavoca okufanele umzimba wakho futhi okungeke kulimaze amalunga akho, njengokubhukuda noma ukugibela ibhayisikili.
Ukuphila ne-EDS kungaba yinselele ngezinye izikhathi. Ubuhlungu nokukhathala okuqhubekayo kungakhungathekisa. Lokho kuvamile. Kodwa ungaqonda ukulinganiselwa kwakho, wenze izinguquko ezidingekayo, futhi uqhubeke nokwenza izinto ozithandayo. Lalela umzimba wakho. Uma ubona noma yiziphi izinguquko ezimpawu zakho noma indlela ozizwa ngayo, ungesabi ukukhuluma nodokotela wakho.
Umlayezo Wokuya Nawe Ekhaya
- I-Ehlers-Danlos Syndrome (EDS) yisimo sofuzo esibangelwa ukuntuleka kweprotheni ye-collagen.
- Izimpawu eziyinhloko ukugoba ngokweqile kanye nokugxuma njalo kwamalunga, ukuqina kwesikhumba, kanye nokulunywa kalula.
- Nakuba kungelapheki ngokuphelele, izimpawu zingaphathwa kahle ngokwelashwa ngokomzimba, ukushintsha indlela yokuphila, kanye neseluleko esifanele sezokwelapha.
- Uma uqhuma ijoyinti, ungalokothi uzame ukulilungisa wena, kodwa hamba uye egumbini lezimo eziphuthumayo esibhedlela (ETU) ngokushesha.
- Uma unalezi zimpawu noma unomlando womndeni, kubaluleke kakhulu ukubona udokotela wakho ukuze uthole ukuxilongwa okunembile kanye neseluleko.
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