Ngaba amalungu akho ahlala ekhululekile? Ngaba ulusu lwakho luqhekeka lula? Ngaba yi-Ehlers-Danlos Syndrome?

Ngaba ngamanye amaxesha uziva ngathi amalungu akho ezingalweni nasemilenzeni ahamba lula kakhulu, ngokungathi akhululekile? Okanye uyagruzuka okanye ujika ube luhlaza okwesibhakabhaka ngokulula nangokuchukumisa nje okuncinci? Usenokuba ucinga, "Owu, kufuneka ukuba ndingumntu ongakwaziyo." Kodwa ayikuko oko kuphela. Isenokuba yimeko ebizwa ngokuba yi -Ehlers-Danlos Syndrome (EDS) , engaqhelekanga kakhulu, kodwa kubalulekile ukuyazi. Makhe sithethe ngale nto ngokweenkcukacha namhlanje.

Yintoni i-Ehlers-Danlos Syndrome (EDS)?

Ngamafutshane, i-Ehlers-Danlos syndrome yimeko echaphazela izicubu ezidityanisiweyo emizimbeni yethu. Ngoku usenokuba uzibuza ukuba zeziphi izicubu ezidityanisiweyo. Khawuthelekelele ukuba imizimba yethu ifana nendlu, kwaye izicubu ezidityanisiweyo zifana nesamente kunye nodaka olubamba izinto kunye, zinika amandla, njengeendonga kunye nophahla. Zikho kuyo yonke indawo emizimbeni yethu - zinceda ekubambeni amalungu ethu kunye, kwaye zinceda ekudibaniseni amalungu ethu omzimba kunye.

Le tissue edibeneyo yenziwe ziintlobo ezimbini eziphambili zeeproteni: i-collagen kunye ne -elastin . Kwi-EDS, imizimba yethu ayikwazi ukuvelisa le protein ebizwa ngokuba yi-collagen ngokufanelekileyo. Okwenzekayo kukuba umntu one-EDS une-collagen ebuthathaka. Oku kuthetha ukuba itissue yakhe edibeneyo ayomelelanga okanye ayiqinanga njengoko kufanele ukuba ibe njalo.

Le meko inokuchaphazela nayiphi na izicubu zomzimba wakho. Umzekelo:

• Nge-cartilage yakho
• Emathanjeni
• Egazini
• Kwizicubu ezinamafutha

Ngokuxhomekeke ekubeni i-EDS ichaphazela phi izicubu zakho ezinxibelelanayo, unokufumana iimpawu ezifana nezi:

• Elusu lwakho
• Kumalungu
• Kwiimisipha
• Kwimithambo yegazi

Into ebalulekileyo kukuba i-Ehlers-Danlos syndrome sisifo semfuza . Oku kuthetha ukuba sinokudluliselwa kwizizukulwana ngezizukulwana. Ukuba umntu kusapho lwakho - oko kukuthi, umntu osondeleyo kuwe, njengomama wakho, utata, abantakwenu, ootatomkhulu noomakhulu - unale meko, kubaluleke kakhulu ukuba ubone ugqirha kwaye uhlolwe.

Ngaba kukho iintlobo ze-Ehlers-Danlos syndrome?

Ewe, oogqirha bahlulahlula i-Ehlers-Danlos syndrome kwiintlobo eziphambili ezili-13, kuxhomekeke kwindlela imeko echaphazela ngayo umzimba kunye neempawu ezibangelwa yiyo.

Ezona ntlobo zixhaphakileyo zihlala zibangela amalungu akhululekileyo okanye angazinzanga kunye nolusu oluthambileyo kakhulu kwaye olunokukrweleka lula. Nangona kunjalo, kukho ezinye iintlobo ezingaqhelekanga ezinokubangela iingxaki ezisongela ubomi. Ngokukodwa , i-vascular Ehlers-Danlos syndrome — uhlobo lwe-EDS oluchaphazela imithambo yegazi — lunokuba yingozi ngakumbi.

Ugqirha wakho uza kukuchazela ukuba loluphi uhlobo lwe-EDS onayo kunye nonyango olufunekayo.

Ixhaphake kangakanani le meko?

Ngokutsho kweengcali, ngokomyinge, malunga nomntu omnye kwabayi-5,000 unokuba ne-Ehlers-Danlos syndrome. Oku kuthetha ukuba kukho abantu eSri Lanka abanale meko, kodwa basenokungazi ngayo.

Zithini iimpawu ze-Ehlers-Danlos syndrome?

Nangona uhlobo ngalunye lwe-EDS luneempawu zalo ezahlukileyo, kukho iimpawu ezimbalwa eziqhelekileyo eziqhele ukubonwa. Makhe sijonge ukuba zeziphi:

• Amalunga e-Hypermobile: Olu luphawu oluqhelekileyo kubantu abaninzi. Amalunga akho asenokuvakala ekhululekile kwaye engazinzile. Abanye abantu banokugoba baze bajije iminwe yabo, iingqiniba, namadolo ngeendlela ezingaqhelekanga kunabanye. Cinga ngako, mhlawumbi ukhe wababona abantu begoba imizimba yabo njengoko besenza kwisekisi, kwaye abanye abantu banokuba nalo mandla ngenxa ye-EDS. Kodwa oku akusoloko kuyinto elungileyo, kuba amalunga anokuqhekeka lula.
• Ulusu luthambile kakhulu, lubhityile, kwaye lunwebeka ngaphezu kwesiqhelo: Ulusu lunokweluka njengebhanti yerabha. Ulusu lwabanye abantu luvakala luthambile kakhulu xa luchukunyiswa, njengevelvet. Kwaye ngamanye amaxesha ulusu lunokuba lubhityile kakhulu.
• Ukugruzuka lula, ukujika kube luhlaza rhoqo: Ukuba ufumana imivumbo emikhulu kunye nemivumbo emva kokuba uqhumile okanye uqhuma oluncinci, oko kukwaluphawu lwale nto. Abanye abantu basenokungakwazi nokuqonda isizathu sokuba oku kwenzeke.
• Amanxeba athatha ixesha elide ngokungaqhelekanga ukuphola, kwaye amanxeba avela ngeendlela ezingaqhelekanga: Kwanamanxeba amancinci athatha ixesha elide ukuphola. Ngamanye amaxesha amanxeba abonakala emancinci kakhulu, njengeenxeba zephepha lecuba.
• Intlungu yamalungu kunye nemisipha: Le yingxaki enabantu abaninzi. Bahlala beziva bebuhlungu kwaye bediniwe.
• Ukudinwa: Ukuziva udiniwe ngalo lonke ixesha, nokuba ulala kangakanani na.
• Ubunzima bokugxila: Ubunzima bokugxila kumsebenzi othile, ngokungathi ingqondo inenkungu.

Ukuba unenye okanye ngaphezulu kwezi mpawu, kungcono ukufuna ingcebiso kagqirha.

Yintoni ebangela i-Ehlers-Danlos syndrome?

Isizathu esiphambili soku kukuguquka kwezakhi zofuzo . Ngamafutshane, xa iiseli zethu zahlukana kwaye kwakheka iiseli ezintsha, ulwazi olukwi-"DNA" yethu luyakopishwa. Ukuba kukho utshintsho oluncinci, isiphene, okanye umonakalo kulandelelwano lwe-"DNA" ngexesha lokukopisha, oko kubizwa ngokuba kukuguquka kwezakhi zofuzo. Njengaxa unobumba omncinci kwiresiphi ushukunyiswa, incasa kunye nenkangeleko yokutya iyatshintsha.

Kwi-EDS, olu tshintsho lwemfuza luthintela umzimba ekuveliseni iproteni ebizwa ngokuba yi-collagen . I-Collagen yeyona nto iphambili enika ulusu lwethu amandla, amalungu, kunye nemithambo yegazi. Xa ingaveliswanga kakuhle, zonke iingxaki ezikhankanyiweyo apha ngasentla ziyavela.

Iingcali zichonge iinguqu ezahlukeneyo zezakhi zofuzo ezingaphezu kwama-20 ezinokubangela i-EDS. Utshintsho oluthile lwezakhi zofuzo onalo luchaza ukuba zeziphi iindawo zomzimba wakho ezichaphazelekileyo. Nangona kunjalo, ngamanye amaxesha oogqirha abakwazi ukubona ngqo ukuba loluphi utshintsho lwezakhi zofuzo olubangela i-EDS yomntu.

Ngubani osengozini enkulu yokuphuhlisa oku?

Ezinye iintlobo ze-EDS zizuzwa njengelifa . Oku kuthetha ukuba ukuba abazali banale meko, utshintsho lwezakhi zofuzo lunokudluliselwa kubantwana babo. Nangona kunjalo, ezinye iintlobo zi-somatic - oko kuthetha ukuba umntu unokuyihlakulela ngaphandle kokuba nabani na kusapho abe nayo, kwaye ayidluliselwa kwizizukulwana ngezizukulwana.

Ukuba omnye okanye bobabini abazali bakho bemvelo bane-EDS, usemngciphekweni wokuba nale meko. Kwakhona, ukuba une-EDS, abantwana bakho banokudlulisela utshintsho lwezakhi zofuzo olubangela loo nto.

Ukuze ufunde okungakumbi ngale nto, ungacela ingcebiso ngemfuza . Abacebisi ngemfuza banokuchaza umngcipheko wokufumana ezi meko kuwe, okanye bazidlulisele kubantwana bakho.

Ziziphi iingxaki ze-Ehlers-Danlos syndrome?

Eyona ngxaki ixhaphakileyo abantu abane-EDS abanokuyifumana kukukhubeka kwamathambo , okubangelwa kukuphuma kwamathambo kwilungu kwindawo yalo eqhelekileyo.

Kubalulekile: Ukuba ukhe wacinga ukuba ukhuphe ilungu, ungazami ukulibuyisela endaweni yalo wedwa. Ukwenza njalo kunokubangela umonakalo ongakumbi. Yiya kwigumbi likaxakeka (ETU) ngoko nangoko. Ngamanye amaxesha, kunokufuneka utyando ukuze kulungiswe ilungu eliphumileyo.

Ezinye iintlobo ze-EDS, ingakumbi i -vascular Ehlers-Danlos syndrome ekhankanyiweyo ngaphambili, zinokubangela iingxaki ezisongela ubomi. Olu hlobo lunokubangela ukuba imithambo yegazi iqhekeke. Oku kunokubangela ukopha ngaphakathi emzimbeni, okukhokelela kwiimeko eziyingozi ezifana ne-stroke .

Abantu abanezi ntlobo ze-EDS basengozini enkulu yokuqhekeka kwamalungu omzimba. Amathumbu kunye nesibeleko somfazi okhulelweyo zezona zitho zinokwenzeka ukuba ziqhekeke.

Iingxaki onokuzifumana zixhomekeke kuhlobo lwe-EDS onayo. Ezinye iingxaki zingabandakanya:

• Iingxaki zeevalvu zentliziyo (iivalvu ezimpompa igazi azisebenzi kakuhle).
• Ukugoba okukhulu komqolo (i-scoliosis).
• Ukuncitshiswa kwe-cornea yamehlo.
• Amalungu aguqileyo.
• Iingxaki zamazinyo neentsini.

Ifunyanwa njani i-Ehlers-Danlos syndrome?

Ugqirha uza kugqiba ukuba unayo na i-Ehlers-Danlos syndrome ngokukuhlola ngokwasemzimbeni aze athathe imbali yakho yezonyango. Baza kujonga ulusu lwakho kunye namalungu, baze bakubuze ngeempawu zakho. Xelela ugqirha wakho ukuba waqala nini ukuba neempawu kwaye ukuba iimpawu zakho ziba mandundu na xa wenza izinto ezithile.

Ngenxa yokuba abantu abaninzi abane-EDS abakwazi ukufumana utshintsho oluchongiweyo lwezakhi zofuzo, oogqirha badla ngokwenza uxilongo ngokusekelwe kwiimpawu kunye nembali yezonyango.

Inyangwa njani i-Ehlers-Danlos syndrome?

Ugqirha wakho uza kucebisa unyango lwe-Ehlers-Danlos syndrome ukunceda ukulawula iimpawu zakho nokuthintela iingxaki eziyingozi. Unyango olufanelekileyo kuwe luya kuxhomekeka kuhlobo lwe-EDS onayo kunye nendlela oluchaphazela ngayo izicubu zakho ezinxibelelanayo.

Ezinye zeendlela zonyango ezisetyenziswa rhoqo zezi:

• Ukukhusela ulusu lwakho: Sebenzisa i-sunscreen xa uphuma elangeni, kwaye sebenzisa isepha ethambileyo engenabungozi eluswini. Ngenxa yokuba ulusu luthambile kakhulu, kufuneka lunyanyekelwe.
• Unyango lomzimba: Ukuzilolonga ukuqinisa izihlunu ezijikeleze amalungu. Oku kunika inkxaso eyongezelelweyo kumalungu kwaye kunokunciphisa ukuqina kwamalungu.
• Ukunxiba iibraces: Oogqirha banokucebisa ukunxiba iibraces ezikhethekileyo ukuze banike inkxaso engakumbi kumalungu kwaye bawagcine eqinile.

Ngenxa yokuba abantu abane-Ehlers-Danlos basengozini enkulu yokufumana i-osteoarthritis kunye nezinye iingxaki zamalungu, ugqirha wakho angakuxelela ukuba uziphephe izinto ezithile. Umzekelo:

• Ukuphakamisa okunzima (ukuphakamisa okunzima).
• Ukuzilolonga okunamandla – umz. ukubaleka, ukutsiba.
• Imidlalo yonxibelelwano – umz. iragbi, ibhola ekhatywayo.

Ngaba isifo sika-Ehlers-Danlos singathintelwa?

Ngelishwa, hayi, i-Ehlers-Danlos syndrome ayinakuthintelwa . Ekubeni singenakulawula utshintsho lwezakhi zofuzo olubangela oku, akukho ndlela yokuthintela i-EDS. Ukuba ukhathazekile ukuba ungadlulisela i-EDS (okanye enye imeko yezakhi zofuzo) ebantwaneni bakho, thetha nogqirha wakho malunga neengcebiso zezakhi zofuzo .

Ukuba ndine-EDS, ndimele ndilindele ntoni?

Ukuba une-Ehlers-Danlos syndrome, kuya kufuneka ulawule iimpawu zakho ubomi bakho bonke. Akukho nyango okwangoku . Nangona kunjalo, wakufunda ukulawula iimpawu zakho, kuya kufuneka ukwazi ukubuyela kwimisebenzi yakho yesiqhelo. Kusenokufuneka uphephe imisebenzi enzima yomzimba (njengemidlalo yokudibanisa).

I-Ehlers-Danlos syndrome ayichaphazeli wonke umntu ngendlela efanayo. Oko uhlangabezana nako kuya kuxhomekeka kuhlobo lwe-EDS onayo kunye nobunzima beempawu zakho. Buza ugqirha wakho ukuba ulindele ntoni ngokwemeko yakho.

Ingakanani iminyaka yobomi bomntu one-Ehlers-Danlos syndrome?

Uninzi lweentlobo ze-EDS azichaphazeli ubomi bakho, oko kuthetha ukuba azifinyezi ubomi bakho.

Nangona kunjalo, ukuba une-EDS echaphazela imithambo yegazi (njenge-vascular Ehlers-Danlos syndrome), usenokuba sengozini enkulu yestroke okanye ezinye iingxaki ezibulalayo zemithambo yegazi.

Nokuba une-vascular Ehlers-Danlos syndrome, ugqirha wakho unokukunceda ufumane unyango kunye notshintsho kwindlela ophila ngayo oluya kukunceda uphile ubomi obukhuselekileyo nobunempilo. Thetha nogqirha wakho malunga neempawu zeengxaki eziyingozi ekufuneka uziqaphele.

Ndingazinyamekela njani?

Jonga iimpawu zakho uze ubone ugqirha ukuba ubona naluphi na utshintsho. Ugqirha wakho uza kukuxelela ukuba kufuneka uye ekliniki kangaphi ukuze ajonge utshintsho emzimbeni wakho. Baza kwenza utshintsho kunyango lwakho ukuba kuyimfuneko.

Kuphephe imidlalo echaphazela kakhulu umzimba. Imisebenzi yomzimba enzima, efana nemidlalo ebandakanya ukudibana komzimba, yandisa umngcipheko wokwenzakala kwamalungu akho (ingakumbi amalungu atsibayo).

Ndifanele ndimbone nini ugqirha wam?

Bona ugqirha ukuba ulusu okanye amalungu akho aziva ebuthathaka, ekhululekile, okanye kukho naluphi na utshintsho emzimbeni wakho. Bona ugqirha ukuba unamanxeba amaninzi kunangaphambili okanye ukuba uziva ngathi uyopha.

Ndingaya nini kwiSebe leeNgxamiseko (i-ETU) ?

Ukuba wena okanye umntu ohamba naye uneempawu zestroke , yiya kwigumbi likaxakeka ngoko nangoko okanye utsalele umnxeba ku-1990.

Qaphela iimpawu ezilumkisayo zestroke kwaye ukhumbule UKUKHAWULEZA :

• B - Ibhalansi: Lumka xa ulahlekelwa yibhalansi ngequbuliso.
• E - Amehlo: Jonga ukuba akukho mbono ulahlekile ngequbuliso kwelinye okanye omabini amehlo, okanye ukubona kabini.
• F - Ubuso: Cela umntu ukuba ancume. Khangela ukuba icala elinye okanye omabini obuso liza kugoba. Olu luphawu lobuthathaka bemisipha okanye ukungasebenzi kakuhle kwayo.
• A - Iingalo: Bacele ukuba baphakamise zombini iingalo. Ukuba kukho ubuthathaka kwelinye icala (ukuba bekungekho ngaphambili), enye ingalo iya kuphakanyiswa ngelixa enye iya kuwa.
• S - Intetho: Xa umntu enesifo sohlangothi , uhlala elahlekelwa kukuthetha. Basenokuthintitha, bawahlebe amagama abo, okanye babe nobunzima bokukhetha amagama afanelekileyo.
• T - Ixesha: Ixesha libaluleke kakhulu, ngoko ke musa ukulibazisa ukufumana uncedo! Ukuba kunokwenzeka, jonga iwotshi uze ukhumbule ixesha eziqale ngalo iimpawu zakho. Ukuxelela ugqirha ukuba iimpawu zakho ziqale nini kunokubanceda bagqibe ukuba loluphi unyango olulungele wena.

Ndingayibuza yiphi imibuzo ugqirha wam?

Xa ubona ugqirha, ungambuza imibuzo efana nale:

• Ngaba ndine-Ehlers-Danlos syndrome okanye enye into?
• Luhlobo luni lwe-EDS endinalo?
• Luhlobo luni lonyango endiludingayo?
• Zeziphi iimpawu okanye utshintsho ekufuneka ndilujonge?
• Kuza kufuneka ndize kangaphi ukuze ndifumane amatyelelo okulandelela?
• Ukuba ndifuna ukuba nabantwana, ngaba ndifanele ndicinge ngengcebiso ngemfuza?

I-Ehlers-Danlos syndrome (EDS) yimeko yemfuza echaphazela amandla akho okuvelisa i-collagen, iproteni exhasa izicwili zakho ezidityanisiweyo. Oku kunokwenza ulusu lwakho, amalungu, kunye nezinye izicwili zibe buthathaka kwaye ziguquguquke ngakumbi kunesiqhelo. Ugqirha wakho unokukunceda ufumane unyango lokulawula iimpawu zakho kunye nokuthintela iingxaki.

Musa ukoyika ukubuza imibuzo kwaye uthethe nogqirha wakho. Iimpawu ze-EDS zinokuba zincinci kakhulu, ingakumbi kwizigaba zokuqala. Zithembe kwaye umamele umzimba wakho. Ukuba uziva ngathi iimpawu zakho ziyatshintsha, okanye ukuba uziva ngathi unyango lwakho alusebenzi, thetha nogqirha wakho.

Isishwankathelo kunye nomyalezo oya nawo ekhaya

Kulungile, ngoku uyaqonda ngcono into ebesithetha ngayo namhlanje, i-Ehlers-Danlos Syndrome (EDS). Khumbula, le yimeko yemfuza ebuthathaka kwizicubu zethu ezinxibelelanayo, ingakumbi iproteni ebizwa ngokuba yi-collagen.

• Iimpawu eziphambili: Amalungu aguquguquka kakhulu, akruneka lula, abuthathaka, enzakala lula, ulusu oluthambileyo, ukukruneka rhoqo, kunye nentlungu yamalungu/imisipha zezona zixhaphakileyo.
• Unobangela: Utshintsho kwimfuza.
• Unyango: Ulawulo lweempawu yeyona nto ibalulekileyo. Unyango lomzimba, ukhuseleko lolusu, kunye nokunxiba izinto ezixhasayo ukuba kuyimfuneko kubalulekile. Ukuphepha imisebenzi echaphazela kakhulu nako kububulumko.
• Okubaluleke kakhulu: Ukuba unale mpawu, okanye ukuba kukho umntu kusapho lwakho onayo le meko, kubalulekile ukubona ugqirha ukuze akunike ingcebiso. Musa ukutsiba ugqibe ngokwakho.

Ukuphila nale meko kunokuba nzima, kodwa ngolawulo olufanelekileyo kunye neengcebiso zonyango, abantu abaninzi banokuphila ubomi obuqhelekileyo nobusebenzayo. Awuwedwa, fumana uncedo.

Isifo sika - Ehlers-Danlos, izicwili ezidityanisiweyo, i-collagen, ukuyekelela kwamalungu, ukuqina kolusu, izifo zemfuza, i-EDS, ukuhambahamba kakhulu