Ngaba wakha waziva ngathi amalungu akho aguquguquka ngakumbi kunamanye? Mhlawumbi ungayigoba iminwe yakho ngendlela engaqhelekanga, okanye ulusu lwakho luzive luthambile ngaphezu kwesiqhelo. Nangona ezi zinto zinokubonakala ngathi zizinto eziqhelekileyo, ngamanye amaxesha zinokubangelwa yimeko yemfuza ebizwa ngokuba yi-Ehlers-Danlos Syndrome (EDS). Ungakhathazeki, le yinto abantu abaninzi abangazange bayive, ngoko ke namhlanje siza kuthetha ngayo ngendlela elula onokuyiqonda.
Ngamafutshane, yintoni i-Ehlers-Danlos Syndrome (EDS)?
Cinga ngemizimba yethu njengesakhiwo esenziwe ngezitena. Ezi zitena (oko kukuthi, amalungu omzimba wethu, amathambo, kunye nolusu) zibanjwe kunye ngesamente. Ngokufanayo, 'isamente' esibamba amalungu omzimba wethu kunye kwaye siwagcine omelele sibizwa ngokuba zii-connective tissues . Ezi zifumaneka kuyo yonke indawo emathanjeni ethu, kwi-cartilage, kulusu, nakwimithambo yegazi.
I-Ehlers-Danlos Syndrome (EDS) sisifo semfuza esibangela ukuba izicwili ezidityanisiweyo zibe buthathaka. Isizathu esiphambili kukungabikho kwe-collagen, iproteni ebalulekileyo ekuqiniseni izicwili ezidityanisiweyo. Kufana nomxube we-mortar ongenasamente. Oku kubangela amalungu akhululekileyo, ulusu lube lolulekileyo kakhulu, ukukrweleka lula, kwaye ngamanye amaxesha nemithambo yegazi kunye nezitho zangaphakathi zibe buthathaka.
Esi sisifo semfuza esifumaneka kwiintsapho. Nangona kunjalo, akukho nyango lucacileyo lwaso okwangoku. Kodwa eyona nto ingcono kukukwazi ukulawula nokulawula iimpawu kwaye uphile ubomi obuqhelekileyo.
Ziziphi iintlobo eziphambili ze-EDS?
I-EDS ithiywe ngamagama oogqirha ababini abayichaze okokuqala. Okwangoku kukho iintlobo eziphambili ezili-13 zayo. Nangona uhlobo ngalunye lwahlukile kancinci, zonke zinesizathu esifanayo: ubuthathaka bamalungu kunye nezakhiwo zolusu. Makhe sijonge iintlobo eziqhelekileyo.
| Uhlobo lwe-EDS | Inkcazo |
|---|---|
| I-Hypermobile EDS (hEDS) | Olu lolona hlobo luxhaphakileyo . Amalunga aguquguquka kakhulu. Oku kunokubangela ukukruquka nokuxinana rhoqo. Kunokubangela iintlungu zemisipha namathambo ixesha elide. |
| I-EDS yeklasikhi (cEDS) | Kolu hlobo, ulusu luncinci kakhulu , luyolula, kwaye luthambile. Ulusu kwiindawo ezifana namadolo neengqiniba luvuvukala lula kwaye kuvela amanxeba. Ukudumba kwamalungu, iinyawo ezithe tyaba, kunye neengxaki zevalvu yentliziyo nazo zinokubakho. |
| I-Vascular EDS (vEDS) | Olu luhlobo oluyingozi kakhulu nolungaqhelekanga . Kwimeko enjalo, inkqubo yemithambo yegazi iba buthathaka. Ke ngoko, kukho umngcipheko wokuba imithambo yegazi kunye namalungu angaphakathi (umz. amathumbu, isibeleko) aqhume/aqhume. |
| Ezinye iintlobo ezinqabileyo | Kukho ezinye iintlobo ezingaqhelekanga, ezifana neKyphoscoliotic EDS (kEDS) kunye neArthrochalasia EDS (aEDS), ezibonakala ngokugoba komqolo, ukukhubeka kwesinqe ngexesha lokuzalwa, kunye nolusu oluthambileyo kakhulu. |
Ziziphi iimpawu eziqhelekileyo ze-EDS?
Iimpawu zinokwahluka ngokuxhomekeke kuhlobo lwe-EDS onayo, kodwa ezi ziimpawu eziqhelekileyo abantu abaninzi abazifumanayo.
- Amalungu aguquguquka kakhulu: Umzekelo, unokukwazi ukugoba ubhontsi wakho uze uwuhlikihle ngasemva kwesandla sakho, okanye ugobe amadolo akho ngasemva. Abanye abantu bakubiza oku ngokuthi 'zii-double-jointed'.
- Ulusu oluthambileyo: Ulusu lwakho lunokutsalwa emzimbeni wakho, kwaye xa ulukhulula, lubuyela apho lwalukhona. Lunokuba bushelelezi kakhulu, njengevelvet.
- Ulusu olubuthathaka: Ulusu luba luhlaza okwesibhakabhaka kwaye luba nemivumbo nokuba emva kokubethwa kancinci. Ukuba wenzakele, kuthatha ixesha elide ukuphola. Amanxeba akheka lula.
Into ebalulekileyo kukuba ayinguye wonke umntu onenye okanye ezimbini zezi mpawu one-EDS. Kodwa ukuba unezinye zezi mpawu, kungcono ukubona ugqirha uze uthethe naye.
Oku kuqhelekile:
- Iingxaki zamazinyo (ukukhupha amazinyo, ukopha kweentsini)
- Intlungu yamalungu
- Ndiziva ndidiniwe kakhulu nangona ndilele kakuhle
- Ubunzima bokugxila
- Intloko ebuhlungu
- Iinyawo ezithe tyaba
- Ubuthathaka bemisipha, ingakumbi xa kubanda
- Ubunzima bokulawula umchamo
- Isiyezi
- Iingxaki zenkqubo yokugaya ukutya, ezifana nokudumba
Ukuba abantwana bane-EDS, izakhono zomzimba ezifana nokuhamba nokuhlala zinokuchaphazeleka.Ingabambezeleka kwaye usenokungabi nabude obufanele iminyaka yakho.
Indlela yokuxilonga esi sifo?
Xa uxela iimpawu ezinje, ugqirha wakho uza kuqala akuhlole ngononophelo.
- Baza kubona ukuba ungagoba kangakanani amadolo akho, iingqiniba zakho, kunye neenzwane zakho.
- Baza kujonga ukuba ulusu lwakho lunwebe kangakanani na kwaye ukuba kukho amanxeba okanye imivumbo.
- Buza ukuba kukho umntu kusapho lwakho onale mpawu.
Uninzi lwexesha, iintlobo ezifana ne-hEDS zinokuchongwa ngolu vavanyo lomzimba kuphela. Nangona kunjalo, ngamanye amaxesha kufuneka uvavanyo olongezelelweyo ukuqinisekisa ukuxilongwa nokufumanisa uhlobo oluchanekileyo.
- Uvavanyo lwemfuza: Isampuli yegazi ingathathwa ukuze kubonwe ukuba kukho utshintsho lwemfuza olubangela i-EDS.
- I-Echocardiogram: Uvavanyo lwamaza esandi ukujonga iingxaki zentliziyo kunye nemithambo yegazi.
- I-CT scan okanye i-MRI scan: Ezi scan zinceda ukubona imeko yomqolo okanye amalungu angaphakathi.
- I-biopsy yolusu: Kuthathwa iqhekeza elincinci lolusu lize lihlolwe phantsi kwe-microscope ukujonga iingxaki kwi-collagen.
Unyango kunye nolawulo
Wakuba uchongile ukuba loluphi uhlobo lwe-EDS onalo, ungathetha nogqirha wakho malunga nendlela yokulawula iimpawu zakho. Kusenokufuneka ubone iingcali ezahlukeneyo.
- Ugqirha wamathambo
- Ingcali yesikhumba
- Ingcali yeRheumatologist
Nazi ezinye zeendlela eziphambili zonyango:
- Unyango lomzimba: Oku kubaluleke kakhulu ukuqinisa izihlunu nokuthintela ukuqina kwamalungu. Ukuzilolonga okungenampembelelo ingako njengokuhamba nokuqubha kulungile.
- Unyango lomsebenzi: Ungafunda ngeendlela kunye nezixhobo zokwenza imisebenzi yemihla ngemihla ibe lula. Uza kufumana iingcebiso malunga nendlela yokunciphisa uxinzelelo kumalungu akho.
- Izixhobo zokuncedisa: Ungadinga izixhasi zokuthintela ukushukuma kwamalungu okanye isitulo esinamavili ukuze sikuncede ekuhambeni.
- Iipilisi zokubulala iintlungu: Xa uneentlungu zamalungu, ungathatha amayeza aqhelekileyo okudambisa iintlungu okanye, ukuba kuyimfuneko, amayeza anamandla achazwe ngugqirha.
- Utyando: Utyando lusetyenziselwa ukulungisa amalungu achaphazeleka rhoqo kwaye angenakulawulwa ngezinye iindlela zonyango. Nangona kunjalo, kuba abantu abane-EDS badla ngokulibazisa ukuphola kwamanxeba, oku kuthathwa njengesisombululo sokugqibela.
Izinto ekufuneka uziqwalasele xa uhlala ne-EDS
Ukuphila ne-EDS kuthetha ukuba kufuneka ukhathalele umzimba wakho ngakumbi. Ezi zinto zinokukunceda uphephe iingozi.
- Kuphephe imidlalo enzima:Ziphephe imidlalo edibanisa umzimba kunye nemithambo ebeka uxinzelelo olukhulu kumalungu, njengokubaleka.
- Musa ukuphakamisa iintsimbi: Ukuphakamisa iintsimbi kwandisa umngcipheko wokukruneka kwamalungu kunye nokwenzakala.
- Khusela ulusu lwakho: Sebenzisa isepha ethambileyo. Faka i-sunscreen yonke imihla. Nxiba ii-pads zokukhusela kwiindawo ezifana namadolo kunye neengqiniba.
- Lumka amazinyo akho: Sebenzisa ibhrashi yamazinyo eneenwele ezithambileyo.
- Impilo yengqondo: Ukuphila nesi sifo esifana nesi ixesha elide kunokuba nzima ngokweemvakalelo. Ukuthetha nomcebisi okanye ukujoyina iqela lenkxaso nabantu abacinga njengam kunokuba luncedo olukhulu.
Ukuba ucinga ngokuqala usapho, ungathetha nomcebisi wezemfuza ukuze uqonde umngcipheko wokudlulisela esi sifo kubantwana bakho.
Umyalezo Wokuya Ekhaya
- I-Ehlers-Danlos Syndrome (EDS) sisifo semfuza esenza buthathaka izicubu zomzimba ezinxibelelanayo.
- Iimpawu eziphambili kukulungela amalungu ukuba aguquguquke, ulusu oluthambileyo, kunye nokukrweleka okulula.
- Nangona kungekho ndlela ithile yokunyanga oku, iimpawu zinokulawulwa ngempumelelo ngonyango lomzimba, amayeza, kunye notshintsho kwindlela yokuphila.
- Ukuba ukrokrela ukuba unale mpawu, musa ukwenza izigqibo usebenzisa i-intanethi, kodwa qiniseka ukuba ubona ugqirha wakho ukuze akunike icebiso.
- Ungaphila ubomi obusempilweni ngokusebenzisana ngokusondeleyo nogqirha wakho kwaye ukhathalele umzimba wakho.
💬 Comments (0)
Akukho zimvo zithunyelweyo okwangoku. Faka uluvo lwakho apha okokuqala.
Faka uluvo lwakho