Ese ingingo zawe zikunze kurekura? Ese uruhu rwawe ruravunika byoroshye? Ese byaba ari indwara ya Ehlers-Danlos?

Ese hari igihe wumva ingingo zawe zo mu maboko no ku maguru yawe zigenda byoroshye cyane, nk'aho zirekuye? Cyangwa uvunika cyangwa uhinduka ubururu byoroshye nubwo waba ukozeho gato? Ushobora kuba utekereza uti "Oh, ngomba kuba ndi umuntu udakomeye." Ariko si ibyo gusa. Bishobora guterwa n'indwara yitwa Ehlers-Danlos Syndrome (EDS) , idakunze kugaragara cyane, ariko ni ngombwa kubimenya. Reka tubiganireho birambuye uyu munsi.

Ehlers-Danlos Syndrome (EDS) ni iki?

Mu magambo make, indwara ya Ehlers-Danlos ni indwara igira ingaruka ku ngingo zihuza imibiri yacu. Noneho ushobora kwibaza niba ingingo zihuza umubiri ari zo. Tekereza ko imibiri yacu imeze nk'inzu, kandi ingingo zihuza umubiri zimeze nk'isima n'isima bihuza ibintu, bikabiha imbaraga, nk'inkuta n'ibisenge. Biboneka hose mu mibiri yacu - bifasha gufata ingingo zacu hamwe, kandi bifasha guhuza ibice by'umubiri wacu.

Iyi ngingo ihuza igizwe n'ubwoko bubiri bw'ingenzi bwa poroteyine: kolajeni na elastine . Muri EDS, imibiri yacu ntishobora gukora iyi poroteyine yitwa kolajeni neza. Icyo bibaho ni uko umuntu urwaye EDS aba afite kolajeni idakomeye. Ibi bivuze ko ingingo ze zihuza ingirabuzimafatizo zidakomeye cyangwa ngo zibe zikomeye nkuko bikwiye.

Iyi ndwara ishobora kugira ingaruka ku ngingo iyo ari yo yose ihuza umubiri wawe. Urugero:

• Ku bw'agatsima kawe
• Ku magufwa
• Ku maraso
• Ku binure

Bitewe n'aho EDS igira ingaruka ku ngingo zawe, ushobora kugira ibimenyetso nk'ibi:

• Ku ruhu rwawe
• Mu ngingo
• Mu mitsi
• Mu mitsi y'amaraso

Igikuru ni uko indwara ya Ehlers-Danlos ari indwara iterwa n’uturemangingo . Ibi bivuze ko ishobora guhererekanywa mu bisekuruza bitandukanye. Niba hari umuntu wo mu muryango wawe - ni ukuvuga umuntu wa hafi yawe, nka mama wawe, so, abavandimwe bawe, ba nyogokuru - ufite iyi ndwara, ni ngombwa cyane ko ujya kwa muganga ukajya kwisuzumisha.

Ese hari ubwoko bwa Ehlers-Danlos syndrome?

Yego, abaganga bagabanya indwara ya Ehlers-Danlos mo ubwoko bugera kuri 13 bw'ingenzi, bitewe n'uburyo iyo ndwara igira ingaruka ku mubiri n'ibimenyetso byayo.

Ubwoko bukunze kugaragara cyane bukunze gutera ingingo n'uruhu bidakomeye cyangwa bidakomeye, byoroshye cyane kandi byoroshye gukomereka. Ariko, hari ubwoko budasanzwe bushobora gutera ingorane zishobora gushyira ubuzima mu kaga. By'umwihariko , indwara ya Ehlers-Danlos vascular - ubwoko bwa EDS bufata imiyoboro y'amaraso - ishobora kuba iteje akaga gato.

Muganga wawe azagusobanurira ubwoko bwa EDS ufite n'uburyo ukeneye kuvurwa.

Iyi ndwara ikunze kugaragara gute?

Nk’uko abahanga babivuga, ugereranije, umuntu umwe kuri buri 5.000 ashobora kuba afite indwara ya Ehlers-Danlos. Ibi bivuze ko muri Sri Lanka hari abantu bafite iyi ndwara, ariko bashobora kuba batayizi.

Ni ibihe bimenyetso by'indwara ya Ehlers-Danlos?

Nubwo buri bwoko bwa EDS bufite ibimenyetso byabwo byihariye, hari ibimenyetso bike bikunze kugaragara. Reka turebere hamwe ibyo ari byo:

• Ingorane zigendanwa: Iki ni ikimenyetso gikunze kugaragara ku bantu benshi. Ingorane zawe zishobora kumva zidafite aho zihuriye kandi zidakora neza. Hari abantu bashobora kunama no kuzunguza intoki zabo, inkokora, n'amavi mu buryo budasanzwe kurusha abandi. Tekereza nawe, ushobora kuba warabonye abantu banama imibiri yabo nk'uko babigenza muri sirkisi, kandi hari abantu bashobora kugira ubwo bushobozi bitewe na EDS. Ariko ibi si byiza buri gihe, kuko ingingo zishobora gucika byoroshye.
• Uruhu rworoshye cyane, ruranutse, kandi rurakura cyane kuruta uko bisanzwe: Uruhu rushobora kurambura nk'umukandara w'ipamba. Uruhu rw'abantu bamwe rusa n'urworoshye cyane iyo urukozeho, nk'urudodo rwa velvet. Kandi rimwe na rimwe uruhu rushobora kuba rworoshye cyane.
• Gukomeretsa byoroshye, bigahinduka ubururu kenshi: Niba ugize ibikomere binini ndetse n'ibikomere nyuma yo kugira ikibyimba gito, icyo nacyo ni ikimenyetso cy'ibi. Hari abantu bashobora kutamenya impamvu ibi bibaho.
• Ibikomere bifata igihe kirekire cyane kugira ngo bikire, kandi inkovu zigaragara mu buryo budasanzwe: Ndetse n'ibikomere bito bimara igihe kirekire kugira ngo bikire. Hari igihe inkovu zisa n'izito cyane, nk'inkovu z'impapuro z'itabi.
• Ububabare bw'ingingo n'imitsi: Iki nacyo ni ikibazo abantu benshi bahura nacyo. Bahora bababara kandi bananiwe.
• Umunaniro: Kumva unaniwe igihe cyose, uko ibitotsi byawe byaba bingana kose.
• Kugorwa no kwibanda ku kintu runaka: Kugorwa no kwibanda ku kintu runaka, nk'aho ubwonko bufite igihu.

Niba ufite kimwe cyangwa byinshi muri ibi bimenyetso, ni byiza gushaka inama kwa muganga.

Ni iki gitera indwara ya Ehlers-Danlos?

Impamvu nyamukuru ibitera ni impinduka mu miterere y’uturemangingo . Mu magambo make, iyo uturemangingo twacu twigabanyijemo ibice maze uturemangingo dushya tukaremwa, amakuru ari muri "DNA" yacu arakopwa. Iyo habayeho impinduka nto, inenge, cyangwa kwangirika mu ruhererekane rwa "DNA" muri uku gukoporora, ibyo byitwa impinduka mu miterere y’uturemangingo. Nk’uko iyo inyuguti nto mu ifunguro yimuwe, uburyohe n’isura y’ibiryo birahinduka.

Muri EDS, iyi mihindagurikire y’uturemangingo ibuza umubiri gukora poroteyine yitwa kolajeni . Kolajeni ni yo kintu cy’ingenzi giha imbaraga uruhu rwacu, ingingo zacu n’imitsi y’amaraso. Iyo idakozwe neza, ibibazo byose byavuzwe haruguru birabaho.

Impuguke zagaragaje impinduka zitandukanye zirenga 20 zishobora gutera EDS. Impinduka yihariye y’uturemangingo ufite niyo igena ibice by’umubiri wawe byagizweho ingaruka. Ariko, rimwe na rimwe abaganga ntibashobora kumenya neza impinduka z’uturemangingo zitera EDS y’umuntu.

Ni nde uri mu kaga gakomeye ko kugira ibi?

Hari ubwoko bwa EDS buvukanwa . Ibi bivuze ko iyo ababyeyi bafite iyo ndwara, ihinduka ry’uturemangingo rishobora kwanduzwa abana babo. Ariko, hari ubwoko buterwa no kwiyumvamo ko umuntu ashobora kuyirwara nta wundi muntu wo mu muryango uyirwaye, kandi ntabwo ihererekanywa kuva ku gisekuru kugeza ku kindi.

Niba umwe mu babyeyi bawe cyangwa bombi bafite EDS, uri mu kaga ko kurwara iyi ndwara. Nanone, niba ufite EDS, abana bawe bashobora kwanduza abandi indwara ya gene itera iyi ndwara.

Kugira ngo umenye byinshi kuri ibi, ushobora gushaka inama ku bijyanye n'imiterere y'umubiri . Abajyanama ku bijyanye n'imiterere y'umubiri bashobora gusobanura ingaruka zo kurwara izi ndwara, cyangwa bakazaha abana bawe.

Ni izihe ngorane ziterwa na Ehlers-Danlos syndrome?

Ingorane ikunze kugaragara ku bantu bafite EDS ni ugucika kw'ingingo , iyo ingingo zigenda zicika mu mwanya wazo usanzwe.

Icy'ingenzi: Niba utekereza ko wakuye ingingo, ntugerageze kuyisubiza mu mwanya wayo wenyine. Kubikora bishobora kwangiza byinshi. Jya mu cyumba cy’ubutabazi bw’ibanze (ETU) ako kanya. Hari igihe biba ngombwa ko ubagwa kugira ngo usane ingingo yakuyemo ingingo.

Amwe mu moko ya EDS, cyane cyane indwara ya Ehlers-Danlos yavuzwe haruguru, ashobora guteza ingorane zishobora gushyira ubuzima mu kaga. Ubwo bwoko bushobora gutuma imiyoboro y'amaraso icika. Ibi bishobora gutera kuva amaraso mu mubiri, bigatera indwara zikomeye nka stroke .

Abantu bafite ubwo bwoko bwa EDS baba bafite ibyago byinshi byo gucika kw'ingingo. Amara n'umura by'umugore utwite ni byo bikunze gucika.

Ingorane ushobora guhura nazo biterwa n'ubwoko bwa EDS ufite. Izindi ngorane zishobora kuba zirimo:

• Ibibazo by'imitsi y'umutima (imitsi ipompa amaraso ntikora neza).
• Gucurama cyane k'umugongo (scoliosis).
• Kugabanya cornea y'amaso.
• Amaguru apfukamye.
• Ibibazo by'amenyo n'ishinya.

Ni gute indwara ya Ehlers-Danlos ipimwa?

Umuganga azasuzuma niba ufite indwara ya Ehlers-Danlos agusuzuma ku mubiri no gufata amateka y'ubuzima bwawe. Bazareba uruhu rwawe n'ingingo zawe, hanyuma bakubaze ibimenyetso byawe. Bwira muganga wawe igihe watangiye kugira ibimenyetso ndetse niba ibimenyetso byawe birushaho kwiyongera iyo ukoze ibintu bimwe na bimwe.

Kubera ko abantu benshi bafite EDS badashobora kubona ihinduka ry’uturemangingo ryagaragaye, abaganga bakunze gusuzuma indwara bashingiye ku bimenyetso n’amateka y’ubuzima bwabo.

Indwara ya Ehlers-Danlos ivurwa ite?

Muganga wawe azagusaba uburyo bwo kuvura indwara ya Ehlers-Danlos syndrome kugira ngo igufashe kugenzura ibimenyetso byawe no kwirinda ingorane zishobora guteza akaga. Ubuvuzi bukubereye buzaterwa n'ubwoko bwa EDS ufite n'uburyo igira ingaruka ku ngingo zawe.

Bumwe mu buryo bukunze gukoreshwa ni ubu:

• Kurinda uruhu rwawe: Koresha amavuta yo kwisiga akingira izuba iyo ugiye hanze ku zuba, kandi ukoreshe amasabune yoroheje atagira ingaruka mbi ku ruhu. Kubera ko uruhu ari rworoshye cyane, rugomba kwitabwaho.
• Ubuvuzi bw'umubiri: Imyitozo ngororamubiri yo gukomeza imitsi ikikije ingingo. Ibi bitanga inkunga y'inyongera ku ngingo kandi bishobora kugabanya gukomera kw'ingingo.
• Kwambara imigozi: Abaganga bashobora kukugira inama yo kwambara imigozi yihariye kugira ngo ukomeze gutera inkunga ingingo no kuzikomeza.

Kubera ko abantu barwaye Ehlers-Danlos bafite ibyago byinshi byo kurwara osteoarthritis n'ibindi bibazo by'ingingo, muganga wawe ashobora kukubwira kwirinda ibintu bimwe na bimwe. Urugero:

• Guterura ibintu biremereye (guterura ibintu biremereye).
• Imyitozo ngororamubiri ikomeye - urugero nko kwiruka, gusimbuka.
• Siporo zo mu bwoko bwa "Contact siporo" - urugero nka rugby, football.

Ese indwara ya Ehlers-Danlos ishobora kwirindwa?

Ikibabaje ni uko oya, indwara ya Ehlers-Danlos ntishobora kwirindwa . Kubera ko tudashobora kugenzura impinduka mu ngirabuzimafatizo ziyitera, nta buryo bwo gukumira EDS buhari. Niba ufite impungenge ko ushobora kwanduza abana bawe EDS (cyangwa indi ndwara iterwa n'ingirabuzimafatizo), vugana na muganga wawe ku birebana n'ubujyanama mu ngirabuzimafatizo .

Niba mfite EDS, ni iki nkwiye kwitega?

Niba ufite indwara ya Ehlers-Danlos, ugomba gucunga ibimenyetso byawe ubuzima bwawe bwose. Nta muti uraboneka . Ariko, umaze kumenya gucunga ibimenyetso byawe, ugomba gusubira mu mirimo yawe isanzwe. Ushobora kwirinda gukora imyitozo ngororamubiri igoye (nk'imikino yo gusiganwa ku maguru).

Indwara ya Ehlers-Danlos ntabwo ifata abantu bose kimwe. Ibyo uhura na byo bizaterwa n'ubwoko bwa EDS ufite n'uburemere bw'ibimenyetso byawe. Baza muganga wawe icyo wakwitega bitewe n'uburwayi bwawe.

Imyaka yo kubaho k'umuntu urwaye indwara ya Ehlers-Danlos ni iyihe?

Ubwoko bwinshi bwa EDS ntibugira ingaruka ku buzima bwawe, bivuze ko butagabanya igihe cyo kubaho kwawe.

Ariko, niba ufite ubwoko bwa EDS bugira ingaruka ku mitsi y'amaraso (nk'indwara ya Ehlers-Danlos vascular), ushobora kuba uri mu kaga ko kurwara indwara yo mu bwonko cyangwa ibindi bibazo by'imitsi y'amaraso byica.

Nubwo waba ufite indwara ya Ehlers-Danlos vascular syndrome, muganga wawe ashobora kugufasha kubona uburyo bwo kuvura no guhindura imibereho yawe bizagufasha kubaho ubuzima bwiza kandi butekanye. Vugana na muganga wawe ku bimenyetso by'ingorane zikomeye ukwiye kwitondera.

Nitwara nte?

Reba ibimenyetso byawe kandi urebe muganga niba ubonye impinduka. Muganga wawe azakubwira inshuro ugomba kuza kwa muganga kugira ngo akurikirane umubiri wawe niba hari impinduka. Azahindura uburyo uvurwa nibiba ngombwa.

Irinde siporo zikora cyane. Imyitozo ngororamubiri isaba imbaraga nyinshi, nk'imikino isaba gukora ku mubiri, yongera ibyago byo gukomeretsa ingingo zawe (cyane cyane ingingo zisimbuka).

Ni ryari ngomba kubonana na muganga wanjye?

Shaka muganga niba uruhu rwawe cyangwa ingingo zawe zumva zidakomeye, zidafite imbaraga, cyangwa hari impinduka mu mubiri wawe. Shaka muganga niba ukunze gukomereka kurusha mbere cyangwa niba wumva urimo kuva amaraso.

Ni ryari nkwiye kujya mu ishami rishinzwe ubutabazi bwihutirwa (ETU) ?

Niba wowe cyangwa undi muntu uri kumwe nawe afite ibimenyetso bya stroke , jya mu cyumba cy’ubutabazi bw’ibanze ako kanya cyangwa uhamagare 1990.

Menya ibimenyetso by'umuburo by'indwara yo mu bwonko kandi wibuke kwihuta :

• B - Kuringaniza: Witondere gutakaza kuringaniza gutunguranye.
• E - Amaso: Reba niba hari ikibazo cy'amaso gitunguranye mu jisho rimwe cyangwa yombi, cyangwa niba hari amaso abiri areba.
• F - Isura: Saba uwo muntu kumwenyura. Shaka uruhande rumwe cyangwa byombi rw'isura kugira ngo runanuke. Iki ni ikimenyetso cy'intege nke z'imitsi cyangwa imikorere mibi y'umubiri.
• A - Amaboko: Saba kuzamura amaboko yombi. Niba hari intege nke ku ruhande rumwe (niba zitari zihari mbere), ukuboko kumwe kuzamurwa mu gihe ukundi kuzagwa.
• S - Imvugo: Iyo umuntu arwaye indwara yo mu bwonko , akenshi atakaza ubushobozi bwo kuvuga. Ashobora kuvuga nabi, kuvuga nabi amagambo ye, cyangwa akagorwa no guhitamo amagambo akwiye.
• T - Igihe: Igihe ni ingenzi cyane, bityo ntutinde kubona ubufasha! Niba bishoboka, reba isaha kandi wibuke igihe ibimenyetso byawe byatangiriye. Kubwira muganga igihe ibimenyetso byawe byatangiriye bishobora kumufasha guhitamo uburyo bwiza bwo kuvura.

Ni ibihe bibazo ngomba kubaza muganga wanjye?

Iyo ugiye kwa muganga, ushobora kubaza ibibazo nk'ibi:

• Ese mfite indwara ya Ehlers-Danlos cyangwa ikindi kintu?
• Ni ubuhe bwoko bwa EDS mfite?
• Ni ubuhe bwoko bw'ubuvuzi nkeneye?
• Ni ibihe bimenyetso cyangwa impinduka ngomba kwitondera?
• Nzaza kangahe kugira ngo nkurikirane?
• Niba nshaka kubyara, ese nkwiye gutekereza ku bujyanama mu by’uturemangingo?

Ehlers-Danlos syndrome (EDS) ni indwara iterwa n’uturemangingo (genes) igira ingaruka ku bushobozi bwawe bwo gukora kolajeni, poroteyine ishyigikira ingirangingo zawe. Ibi bishobora gutuma uruhu rwawe, ingingo zawe n’izindi ngingo zidakomera kandi zigahinduka nk’uko bisanzwe. Muganga wawe ashobora kugufasha kubona uburyo bwo kuvura ibimenyetso byawe no kwirinda ingorane.

Ntutinye kubaza ibibazo no kuvugana na muganga wawe. Ibimenyetso bya EDS bishobora kuba bitagaragara cyane, cyane cyane mu ntangiriro. Izere kandi wumve uko umubiri wawe umeze. Niba wumva ibimenyetso byawe birimo guhinduka, cyangwa niba wumva ko ubuvuzi bwawe budakora, vugana na muganga wawe.

Incamake n'ubutumwa bwo kujyana mu rugo

Noneho rero, ubu usobanukiwe neza icyo twavuze uyu munsi, Ehlers-Danlos Syndrome (EDS). Wibuke ko iyi ari indwara y’uturemangingo igabanya intege nke z’uturemangingo tw’umubiri, cyane cyane poroteyine yitwa kolajeni.

• Ibintu by'ingenzi: Ingingo zigorama cyane, zivunika byoroshye, zoroshye gukomereka, uruhu rurakomera, gukomereka kenshi, ndetse n'ububabare bw'ingingo/imitsi ni byo bikunze kugaragara cyane.
• Impamvu: Impinduka mu miterere y'uturemangingo.
• Uburyo bwo kuvura: Kurwanya ibimenyetso ni ingenzi. Ubuvuzi bw'umubiri, kurinda uruhu, no kwambara ibikoresho bigufasha kwirinda indwara ni ngombwa. Kwirinda ibikorwa bishobora kugira ingaruka mbi na byo ni ingenzi.
• Icy'ingenzi kurushaho: Niba ufite ibi bimenyetso, cyangwa niba hari umuntu wo mu muryango wawe ufite iyi ndwara, ni ngombwa kugana muganga kugira ngo akugire inama. Ntukihutire gufata umwanzuro wenyine.

Kubana n'iki kibazo bishobora kugorana, ariko iyo umuntu afashwe neza kandi agahabwa inama n'abaganga, abantu benshi bashobora kubaho ubuzima busanzwe kandi burangwa n'ibikorwa. Ntabwo uri wenyine, shaka ubufasha.

Indwara ya Ehlers -Danlos, ingirangingo zihuza ingingo, kolajeni, kuruhuka kw'ingingo, gukomera k'uruhu, indwara z'uturemangingo, EDS, kugenda cyane kw'umubiri