Ngaba wakha waphawula ukuba amalungu akho agobile kwaye ashukuma ngaphezu kwabahlobo bakho? Okanye uyagruzuka kwaye utyumke nokuba ufike kwindawo encinci? Usenokucinga, "Owu... yindlela umzimba wam onjalo, bendinjalo ukususela ndisengumntwana." Kodwa ngamanye amaxesha ezi zinokuba ziimpawu zemeko esingathethi kakhulu ngayo, kodwa ngokuqinisekileyo kufuneka sazi ngayo. Namhlanje siza kuthetha ngemeko enye enjalo, i-Ehlers-Danlos Syndrome, okanye i-EDS ngamafutshane.
Ngamafutshane, yintoni i-Ehlers-Danlos Syndrome (EDS)?
Cinga ngemizimba yethu njengesakhiwo esakhiwe kakuhle. Yonke into kwesi sakhiwo, kuquka izitena, iindonga, nophahla, ibanjwe kunye kwaye iqiniswe yisamente. Ngokufanayo, amalungu omzimba wethu, amathambo, izihlunu, kunye nolusu zidibene, zixhaswa, kwaye ziqiniswe luthungelwano olukhethekileyo lwezicubu. Ezi zicubu sizibiza ngokuba zii-connective tissues .
Iqhawe eliphambili lale tissue edibeneyo yiproteni ebizwa ngokuba yi-collagen . Ifana nesamente. Le collagen yiyo enika ulusu lwethu amandla kunye nozinzo, amalungu, kunye nemithambo yegazi.
Ngoku, nantsi into eyenzekayo emzimbeni womntu one-Ehlers-Danlos Syndrome (EDS): Kukho utshintsho lwemfuza kwindlela umzimba wakhe oyenza ngayo le protein ebizwa ngokuba yi-collagen. Ngoko ke i-collagen eveliswayo ayinamandla ngokwaneleyo, njengesamente endala. Ngoko ke kwenzeka ntoni? Kufana nokuba isakhiwo siyabuthathaka, izicubu zomzimba ezidityanisiweyo ziyabuthathaka. Ngoko ke inokuchaphazela iindawo ezininzi zomzimba.
- Igazi kunye nemithambo yegazi
- Amathambo (amathambo)
- I-Cartilage (izicubu ezithambileyo phakathi kwamathambo)
- Amafutha
- Iindibano (iindibano)
- Izihlunu
- Ulusu
Ngaba kukho iintlobo eziphambili ze-EDS?
Ewe, i-EDS ayifani kuye wonke umntu. Le meko yahlulwe yaba ziintlobo eziphambili ezili-13 ngokusekwe kwindlela echaphazela ngayo umzimba kunye neempawu ezibangela yona. Kodwa namhlanje siza kuthetha ngezinye zezona ntlobo zixhaphakileyo ekufuneka uzazi ngakumbi.
| Igama lohlobo lwe-EDS | Intshayelelo emfutshane |
|---|---|
| I-Hypermobile EDS | Olu lolona hlobo luqhelekileyo. Amalungu azo aguquguquka kakhulu kwaye akhululekile. Aziva ngathi 'avalelwe ngaphakathi'. Amalungu adla ngokwenza isandi 'sokuklikha' kwaye anokuqhawuka lula. |
| I-EDS yakudala | Oku kufana nohlobo olungasentla, kodwa kuchaphazela ulusu ngaphezu kwamalungu. Ulusu luncinci kakhulu, lufana nerabha, kwaye lunokukrazuka lula kwaye lonzakale. |
| I-EDS efana neyeklasikhi | Njengoko igama lisitsho, ifana kakhulu neClassical EDS, kodwa kukho umahluko omncinci kwiimpawu. Ngugqirha kuphela onokuzixilonga ezi. |
| I-EDS yentliziyo kunye nevalvu yentliziyo | Oku kunokuchaphazela inkqubo yentliziyo kunye neevalvu zentliziyo, kwaye kubangele iimpawu kulusu kunye namalungu. |
| I-Vascular EDS | Olu luhlobo olungaqhelekanga noluyingozi. Luchaphazela imithambo yegazi kunye namalungu angaphakathi ngaphezu kwamalungu. Iindonga zazo zibuthathaka kwaye zinokuqhushumba okanye ziqhekeke lula. Le yimeko efuna ingqalelo ekhawulezileyo. |
Ziziphi iimpawu eziqhelekileyo ze-EDS?
Ngoku usenokuba ucinga, "Andazi ukuba nam ndinayo le nto." Makhe sijonge ezona mpawu ziqhelekileyo zale meko. Kodwa khumbula into enye, ukuba nje unenye okanye ezimbini kwezi mpawu akuthethi ukuba une-EDS . Ezi mpawu zinokubonakala nakwezinye izifo. Ke ngoko, eyona nto ingcono onokuyenza kukubona ugqirha ukuba unamathandabuzo kwaye wenze uxilongo oluchanekileyo.
| Uphawu | Kalula nje... |
|---|---|
| Amalunga e-Hypermobile | Amalungu agobile kakhulu kunesiqhelo. Abanye bathi 'adibene kabini'. Amalungu afana negxalaba, idolo, kunye neminwe ahlala eshukuma. |
| Ulusu oluthambileyo noluthambileyo | Ulusu luthambile kakhulu, lufana nevelvet. Kwaye njengebhola yentlama yepizza, ungayilula kangangoko ufuna, kwaye ibuyele apho yayikhona xa wawuyikhulula. |
| Ulusu olubuthathaka kunye namanxeba | Kwanenxeba elincinci lithatha ixesha elide ukuphola. Liba namanxeba lula, kwaye ngamanye amaxesha amanxeba ayancipha aze abonakale etshintshile umbala. |
| Ukugruzuka lula | Ngamanye amaxesha kuvela imivumbo eluhlaza okwesibhakabhaka emzimbeni nokuba awuzange ubethwe naphi na. Nokuba ungabetheka kancinci ndaweni ithile, iya kuba luhlaza okwesibhakabhaka. |
| Intlungu yamalungu kunye nemisipha | Kukho iintlungu ezingapheliyo, njengokuqaqamba kwamalungu nezihlunu. Le ntlungu iyafika iphele. |
| Ukudinwa okungapheliyo | Ukudinwa nokungaphilanga imini yonke nokuba sele ulele kakuhle. |
| Iingxaki zenkqubo yokugaya ukutya | Usenokuba neengxaki zesisu, ukudumba, ukuqhina, njl. Abanye abantu banokuba neemeko ezifana ne-Irritable Bowel Syndrome (IBS). |
| Umngcipheko weHernias | Umngcipheko we-hernia uphezulu kuba izicwili ezinxibelelanisayo ezijikeleze izihlunu zibuthathaka. |
Yintoni ebangela i-EDS? Ingaba iyasulela?
Hayi, i-EDS ayisiyonto inokudluliselwa ukusuka komnye umntu ukuya komnye . Yimeko yemfuza ngokupheleleyo. Oko kukuthi, ibangelwa lutshintsho lwemfuza kwiimfuza zethu. Esi siphene senzeka kwiimfuza ezisiyalela ukuba sivelise iproteni ye-collagen ebesithethe ngayo ngaphambili.
Iingcali zichonge iintlobo ngeentlobo zemfuza ezingaphezu kwama-20 ezibangela i-EDS. Uhlobo lwemfuza onalo luchaza uhlobo lwe-EDS kunye neempawu ozivezayo.
Ezinye iintlobo ze-EDS zinokufunyanwa ngabazali ziye ebantwaneni. Oku kuthetha ukuba ukuba umzali ngamnye unale meko, kukho ithuba lokuba nabantwana nabo babe nayo. Nangona kunjalo, ezinye iintlobo zinokwenzeka ngokwengqondo, ngaphandle kwembali yosapho.
Ukuba kukho umntu kusapho lwakho onale meko, okanye ukuba uneempawu ezifanayo, kubaluleke kakhulu ukuthetha nogqirha, kwaye ukuba kuyimfuneko, ufumane ingcebiso ngemfuza .
Ziziphi iingxaki ezinokubakho ze-EDS?
Eyona ngxaki ixhaphakileyo kule meko kukukhubeka kwesisu . Oku kunokuba ngamava abuhlungu kakhulu. Kukho into ebaluleke kakhulu ekufuneka siyikhumbule sonke apha.
Ukuba ukhupha ilungu, ungaze uzame ukulibopha ngokwakho okanye ucele omnye umntu ukuba alibopha! Oku kuya kubangela umonakalo ongakumbi kwilungu, kwizicubu ezijikelezileyo, nakwimithambo-luvo. Eyona nto ingcono onokuyenza kukuya kwiSebe lezeMpilo eziNgxamisekileyo (ETU) elikufutshane ngokukhawuleza.
Kwezinye iintlobo ezinzima, ezifana ne-vascular EDS, iingxaki zinokwenzeka ezinokuba yingozi ebomini. Umzekelo, imithambo yegazi ingaqhuma, ibangele ukopha emzimbeni kunye neemeko ezinzima ezifana nestroke .
Ezinye iingxaki zingabandakanya:
- I-Scoliosis
- Iingxaki zevalvu yentliziyo
- Iingxaki zamazinyo neentsini
- Amalungu aguqileyo
Unyango kunye nolawulo lwe-EDS
Okokuqala, akukho nyango lwe-EDS okwangoku. Kodwa ungakhathazeki. Ungazilawula iimpawu zakho, uthintele iingxaki, kwaye uphile ubomi obuqhelekileyo nobusemgangathweni. Injongo ephambili yonyango kukulawula iimpawu zakho.
- Unyango lomzimba: Oku kubaluleke kakhulu. Ukuzilolonga okuqinisa izihlunu ezijikeleze amalungu kunokunceda ekunciphiseni ukuqina kwamalungu kunye nentlungu.
- Ukunxiba iibraces ezikhethekileyo:Ugqirha wakho unokucebisa iibraces ezikhethekileyo ukunika inkxaso eyongezelelweyo nokukhusela amalungu abuthathaka.
- Ukhathalelo olukhethekileyo lolusu: Ekubeni ulusu lubuthathaka kakhulu, kubalulekile ukulukhusela ngokusebenzisa i-sunscreen xa uphuma elangeni kwaye usebenzisa isepha ezithambileyo nezingacaphukisiyo.
Kwakhona, kungcono ukuzikhwebula kwizinto ezithile ezinokonakalisa amalungu.
- Nxibelelana nezemidlalo
- Ukuzilolonga okunempembelelo ephezulu (ukubaleka, ukutsiba, kunye neminye imithambo eneempembelelo ephezulu)
- Ukwenyusa iintsimbi
Oku akuthethi ukuba awukwazi ukuzilolonga konke konke. Ungathetha nogqirha wakho malunga nokuzilolonga okufanelekileyo emzimbeni wakho kwaye okungayi konakalisa amalungu akho, njengokudada okanye ukukhwela ibhayisekile.
Ukuphila ne-EDS kunokuba nzima ngamanye amaxesha. Intlungu engapheliyo kunye nokudinwa kunokuba yinto ecaphukisayo. Yinto eqhelekileyo leyo. Kodwa ungayiqonda imida yakho, wenze utshintsho olufunekayo, kwaye uqhubeke nokwenza izinto ozithandayo. Mamela umzimba wakho. Ukuba ubona naluphi na utshintsho kwiimpawu zakho okanye indlela oziva ngayo, ungoyiki ukuthetha nogqirha wakho.
Umyalezo Wokuya Ekhaya
- I-Ehlers-Danlos Syndrome (EDS) yimeko yemfuza ebangelwa kukungabikho kweproteni ye-collagen.
- Iimpawu eziphambili kukugoba kakhulu kunye nokutsiba rhoqo kwamalungu, ukuthamba kolusu, kunye nokukrweleka lula.
- Nangona ingenakunyangwa ngokupheleleyo, iimpawu zinokulawulwa kakuhle ngonyango lomzimba, utshintsho kwindlela yokuphila, kunye neengcebiso ezifanelekileyo zonyango.
- Ukuba uqhuma ijoyinti, ungaze uzame ukuyilungisa ngokwakho, kodwa yiya kwigumbi likaxakeka lesibhedlele (ETU) ngoko nangoko.
- Ukuba unezi mpawu okanye unembali yosapho, kubaluleke kakhulu ukubona ugqirha wakho ukuze ufumane ukuxilongwa ngokuchanekileyo kunye neengcebiso.
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