Ese ingingo zawe zigorama cyane? Ese uruhu rwawe rurakura? Reka twige kuri Ehlers-Danlos Syndrome (EDS)

Ese wigeze ubona ko ingingo zawe zigorama kurusha inshuti zawe, cyangwa ko urambarara gato kurusha inshuti zawe? Cyangwa uhura n'igisebe kinini iyo ugeze ahantu hato? Nubwo ushobora gutekereza ko ibi bintu ari ibisanzwe, bishobora guterwa n'indwara tutaramenya cyane yitwa Ehlers-Danlos Syndrome (EDS). Ntugahangayike, reka tubiganireho mu buryo bworoshye.

Mu magambo make, Ehlers-Danlos Syndrome (EDS) ni iki?

Ehlers-Danlos Syndrome (EDS) ni indwara y’uturemangingo ifata imibiri yacu. Itera ingirabuzimafatizo zihuza imibiri yacu zigacika intege. Tekereza nk'uko kole ihuza ibintu nk'amagufwa yacu, umugeri n'amaraso. Ku muntu urwaye EDS, iyi kole iba idakomeye.

Ibi bishobora gutuma ingingo zawe zirekura, uruhu rwawe rugacika intege kandi rugakomereka byoroshye, ndetse rimwe na rimwe n'imitsi y'amaraso n'ingingo z'imbere bigacika intege. Nubwo nta muti uhari ubu, ushobora kwihanganira ibimenyetso byawe neza no kubaho ubuzima busanzwe.

Ni ubuhe bwoko bw'ingenzi bwa EDS?

Yitiriwe abaganga babiri babanje gusobanura iyi ndwara, Ehlers na Danlos. Ubu hari ubwoko 13 bw'ingenzi bw'iyi ndwara. Nubwo buri bwoko butandukanye gato, bwose buhuriye ku mpamvu imwe: gucika intege kw'ingingo n'uruhu. Reka turebe ubwoko bw'ingenzi.

Ni ibihe bimenyetso bisanzwe bya EDS?

Ibimenyetso bishobora gutandukana bitewe n'ubwoko bwa EDS ufite, ariko ibi ni bimwe mu bimenyetso abantu benshi bakunze kubona:

• Ingingo zoroshye cyane: Tekereza niba ushobora kunama ikirenge cyawe kinini ukagikoraho munsi y'ukuboko kwawe, cyangwa niba ushobora kunama amavi yawe inyuma, icyo ni ikimenyetso cy'ibi.
• Uruhu ruramba: Ese ushobora kurambura uruhu rwawe rukarukura ku mubiri wawe hanyuma ukarureka, maze rugasubira mu mwanya warwo nk'umukandara wa rubber? Uruhu rushobora no kumva rworoshye cyane , nk'urudodo rwa velvet.
• Kubabara byoroshye: Uruhu rurakomera cyane . Ndetse n'agahu gato gashobora gutera ibikomere binini, inkovu, n'ibikomere bifata igihe kirekire kugira ngo bikire.

Ibindi bintu bigaragara

Uretse ibi bintu by'ingenzi, ushobora no kubona ibintu nk'ibi:

• Ibibazo by'amenyo (amenyo agongamye, ishinya riva amaraso)
• Ububabare bw'ingingo
• Kumva unaniwe nubwo wamaze gusinzira neza
• Guhangana no kwibanda ku kintu kimwe
• Umutwe
• Ibirenge birebire
• Intege nke z'imitsi, cyane cyane mu gihe cy'ubukonje
• Kugorwa no kugenzura inkari
• Kuzungera
• Ibibazo by'igogora nko kubyimba inda no gucika intege

Ibimenyetso bishobora kugaragara ku bana bato

Niba hari abana bafite EDS, ushobora no kubona ibintu bimwe na bimwe mu mikurire yabo.

• Gutinda mu myitozo ngororamubiri nko kwicara, guhagarara no kugenda.
• Kutagira uburebure cyangwa ibiro bikwiranye n'imyaka.
• Mu moko amwe n'amwe adasanzwe, imiterere yihariye yo mu maso (amaso manini, agasaya gato, izuru rito) irashobora kugaragara.

Kuki EDS ibaho?

Muri make, EDS ibaho iyo poroteyine yitwa kolajeni mu mubiri wacu idakozwe neza. Kolajeni, nk'uko nabivuze mbere, ni "kole" ihuza amagufwa yacu, uruhu, n'ingingo zacu. Iyo imbaraga z'iyi kole zigabanutse, ikintu cyose gifatanye kiba gicika intege kandi ntigikora neza.

EDS ni indwara iterwa n'uturemangingo . Ibi bivuze ko ishobora kwanduzwa ababyeyi ikagera ku bana. Niba umubyeyi wawe cyangwa so afite iyo ndwara, nawe ufite amahirwe menshi yo kuyirwara. Ariko, rimwe na rimwe, umuntu mushya ashobora kuyirwara nta muntu wo mu muryango uyirwaye.

Ni gute umuganga asuzuma ibi?

Iyo ugiye kureba muganga ku bijyanye n'ibi bimenyetso, abanza gukora isuzuma ry'umubiri.

• Gusuzuma ingingo: Ibi bizareba aho ushobora kunama amavi yawe, inkokora, n'intoki. Ese ushobora gukora ku gikumwe cyawe munsi y'ukuboko kwawe? Ese ushobora kunama urutoki rwawe rurenza dogere 90?
• Gusuzuma uruhu: Bisuzuma niba uruhu rufite ubukana, ibisebe, n'inkovu.
• Amateka y'umuryango: Uzabibazwa niba wowe cyangwa undi muntu wo mu muryango wawe yigeze kugira ibi bimenyetso mbere.

Akenshi, muganga ashobora kubona igitekerezo muri iki kizamini gusa, ariko rimwe na rimwe hashobora gukenerwa ibizamini byinshi kugira ngo hemezwe ikibazo.

Ibizamini byo kwemeza

• Gupima imiterere y'uturemangingo: Ingero z'amaraso zishobora gufatwa kugira ngo harebwe niba hari impinduka zimwe na zimwe mu ngirabuzimafatizo zitera EDS.
• Echocardiogram: Iyo habayeho gukeka ko hari ikibazo ku mutima cyangwa imitsi y'amaraso, ubu buryo bwo gusuzuma butagira ububabare bushobora gukorwa kugira ngo harebwe imikorere y'umutima.
• Gupima CT cyangwa MRI: Ubu bwoko bw'ibipimo bushobora gukenerwa kugira ngo harebwe niba hari ingaruka ku ruti rw'umugongo, imitsi, cyangwa ingingo z'imbere.
• Biopsy y'uruhu: Agace gato k'uruhu karafatwa kagasuzumwa hifashishijwe mikorosikopi kugira ngo harebwe niba hari ibitagenda neza muri kolajeni.

Bivurwa bite kandi bigacungwa bite?

Iyo umaze kumenya ubwoko bwa EDS ufite, ushobora guhangana n'ibimenyetso bifitanye isano na yo. Ushobora gukenera ubufasha bw'inzobere zitandukanye kugira ngo ubikore. Urugero:

• Umuganga w'amagufwa
• Inzobere mu by'uruhu
• Inzobere mu kuvura rubagimpande
• Inzobere mu by'umutima

Uburyo bwo kuvura bushobora kuba burimo:

• Ubuvuzi bw'umubiri: Imyitozo ngororamubiri n'ubuvuzi bw'umubiri ni ingenzi cyane mu gukomeza imitsi no kugabanya gukomera kw'ingingo. Imyitozo yoroshye nko kugenda no koga ni myiza cyane.
• Ubuvuzi bw'akazi: Bukwigisha ubuhanga n'ibikoresho bikenewe kugira ngo ukore imirimo ya buri munsi byoroshye kandi bitabangamiye umubiri wawe.
• Ibikoresho byo gufasha: Kwambara imigozi yo gufata ingingo, no gukoresha ibikoresho nk'intebe y'abamugaye niba bibaye ngombwa.
• Imiti igabanya ububabare: Ushobora gufata imiti igabanya ububabare yandikiwe na muganga wawe kubera ububabare bw'ingingo.
• Kubaga: Iyo ubundi buryo bwo kuvura bunaniranye, hakorwa kubaga ingingo. Ariko, kubera ko abantu bafite EDS bakunze gutinda gukira kw'ibikomere, ibi bifatwa nk'uburyo bwa nyuma.

Ibintu ugomba kuzirikana mu gihe ubana n'indwara ya EDS

EDS ni indwara ibaho ubuzima bwose, bityo ni ngombwa kwiga kuyibana nayo.

• Rinda uruhu rwawe: Koresha amasabune yoroheje. Buri gihe shyira amavuta yo kwisiga ku zuba iyo ugiye hanze ku zuba. Ambara udupapuro two kwirinda ku mavi no ku nkokora.
• Irinde siporo zikora ku buryo bukabije: Irinde kwiruka, gusimbuka, no gukora siporo zikora ku mubiri. Irinde guterura ibintu biremereye.
• Wite ku menyo yawe: Koresha uburoso bw'amenyo bufite amenyo yoroshye.
• Ubuzima bwo mu mutwe: Kubana n'iki kibazo bishobora kunaniza cyane mu byiyumvo, bityo shaka ubufasha ku mujyanama cyangwa ujye mu itsinda ry'abaterankunga bafite ibitekerezo nk'ibyabo.

Niba urimo gutekereza gushinga umuryango, ushobora gusaba ubufasha bw'umujyanama mu by'imiterere y'umubiri kugira ngo amenye ibyago byo kubyara umwana uzahabwa iyi ndwara.