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

Ese wigeze wumva ingingo zawe zoroshye kurusha izindi? Wenda ushobora kunama intoki zawe mu buryo budasanzwe, cyangwa uruhu rwawe rugasa n'aho rwarambuye kurusha uko bisanzwe. Nubwo ibi bishobora gusa n'ibintu bisanzwe, rimwe na rimwe bishobora guterwa n'indwara y'uturemangingo yitwa Ehlers-Danlos Syndrome (EDS). Ntugahangayike, iki ni ikintu abantu benshi batarabyumva, bityo uyu munsi turakiganiraho mu buryo bworoshye ushobora gusobanukirwa.

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

Tekereza umubiri wacu nk'inyubako ikozwe mu matafari. Ayo matafari (ni ukuvuga ingingo z'umubiri wacu, amagufwa, n'uruhu) afatanye n'isima. Mu buryo nk'ubwo, 'isima' ifata ibice by'umubiri wacu hamwe kandi ikabikomeza yitwa ingirabuzimafatizo . Ibi biboneka hose mu magufwa yacu, mu gituza, mu ruhu no mu mitsi y'amaraso.

Ehlers-Danlos Syndrome (EDS) ni indwara iterwa n’uturemangingo ituma ingingo zihuza umubiri zicika intege. Impamvu nyamukuru ni ukubura kolajeni, poroteyine ikenewe cyane kugira ngo ingingo zihuza umubiri zikomere. Ni nk'uruvange rw'ibintu bidafite sima. Ibi bituma ingingo zirekura, uruhu rukagorama cyane, imvune zoroshye, ndetse rimwe na rimwe n'imitsi y'amaraso n'ingingo zo mu nda bicika intege.

Iyi ni indwara iterwa n'uturemangingo igaragara mu miryango. Ariko, nta muti wihariye uraboneka kugeza ubu. Ariko icyiza ni ukubasha kugenzura no gucunga ibimenyetso no kubaho ubuzima busanzwe.

Ni ubuhe bwoko bw'ingenzi bwa EDS?

EDS yitiriwe abaganga babiri bayisobanuye bwa mbere. Kuri ubu hari ubwoko 13 bw'ingenzi bwayo. Nubwo buri bwoko butandukanye gato, bwose buhuriye ku mpamvu imwe: gucika intege kw'ingingo n'imiterere y'uruhu. Reka turebe ubwoko bukunze kugaragara cyane.

Ni ibihe bimenyetso bisanzwe bya EDS?

Ibimenyetso bishobora gutandukana bitewe n'ubwoko bwa EDS ufite, ariko ibi ni byo bimenyetso abantu benshi bakunze kubona.

• Ingingo zoroshye cyane: Urugero, ushobora gupfunyika igikumwe cyawe ukagikanda inyuma y'ukuboko kwawe, cyangwa ugapfukama inyuma. Hari abantu babyita 'ibifite impande ebyiri'.
• Uruhu ruramba: Uruhu rwawe rushobora gukurwa ku mubiri wawe, kandi iyo urekuye, rusubira aho rwari ruri. Rushobora kandi kuba rworoshye cyane, nk'urudodo rwa velvet.
• Uruhu rworoshye: Uruhu ruhinduka ubururu kandi rugakomereka nubwo rwakubiswe gato. Iyo ukomeretse, bifata igihe kirekire kugira ngo rukire. Inkovu zibaho byoroshye.

Ibi nabyo ni ibisanzwe:

• Ibibazo by'amenyo (gukura amenyo, kuva amaraso mu ishinya)
• Ububabare bw'ingingo
• Kumva unaniwe cyane nubwo wamaze gusinzira neza
• Kugorwa no kwibanda ku bintu
• Umutwe
• Ibirenge birebire
• Intege nke z'imitsi, cyane cyane mu gihe cy'ubukonje
• Kugorwa no kugenzura inkari
• Kuzungera
• Ibibazo by'igogora, nko kubyimba

Niba abana bafite EDS, ubushobozi bwo kugenda no kwicara bushobora kugira ingaruka ku mikorere y'umubiri.Bishobora gutinda kandi ushobora kuba udafite uburebure bujyanye n'imyaka yawe.

Ni gute wasuzuma indwara?

Iyo uvuze ibimenyetso nk'ibi, muganga wawe abanza kugusuzuma neza.

• Bazareba aho ushobora kunama amavi yawe, inkokora n'amano.
• Bazareba uruhu rwawe rungana iki kandi niba hari inkovu cyangwa ibisebe.
• Baza niba hari umuntu wo mu muryango wawe ufite ibi bimenyetso.

Akenshi, ubwoko nka hEDS bushobora kumenyekana hakoreshejwe iki kizamini cyonyine. Ariko, rimwe na rimwe hakenerwa ibizamini birambuye kugira ngo hemezwe indwara kandi hamenyekane ubwoko nyabwo.

• Gupima imiterere y'uturemangingo: Ikizamini cy'amaraso gishobora gufatwa kugira ngo harebwe niba hari impinduka mu ngirabuzimafatizo zitera EDS.
• Echocardiogram: Ikizamini cy'amajwi kugira ngo harebwe niba hari ibibazo by'umutima n'imitsi y'amaraso.
• Gupima CT cyangwa MRI: Ibi bipimo bifasha kureba imiterere y'umugongo cyangwa ingingo z'imbere.
• Biopsy y'uruhu: Agace gato k'uruhu karafatwa kagasuzumwa hifashishijwe mikorosikopi kugira ngo harebwe niba hari ibitagenda neza muri kolajeni.

Kuvura no gucunga

Umaze kumenya ubwoko bwa EDS ufite, ushobora kuvugana na muganga wawe ku buryo bwo kwifata. Ushobora kandi gukenera kubonana n'inzobere zitandukanye.

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

Dore bumwe mu buryo bw'ingenzi bwo kuvura:

• Ubuvuzi bw'umubiri: Ibi ni ingenzi cyane mu gukomeza imitsi no kwirinda kunanuka kw'ingingo. Imyitozo ngororamubiri idatera ingaruka mbi nko kugenda no koga ni myiza.
• Ubuvuzi bw'akazi: Ushobora kwiga uburyo n'ibikoresho byoroshya imirimo ya buri munsi. Uzahabwa inama z'uburyo wagabanya umuvuduko ku ngingo zawe.
• Ibikoresho byo gufasha: Ushobora gukenera ibyuma bigufasha kwirinda ko ingingo zigenda cyangwa intebe y'abamugaye kugira ngo ikufashe kugenda.
• Imiti igabanya ububabare: Ku bubabare bw'ingingo, ushobora gufata imiti isanzwe igabanya ububabare cyangwa, byaba ngombwa, imiti ikomeye wahawe na muganga.
• Kubaga: Kubaga bikoreshwa mu gusana ingingo zikunze kwibasirwa kandi zidashobora kugenzurwa n'ubundi buryo bwo kuvura. Ariko, kubera ko abantu bafite EDS bakunze gutinda gukira ibikomere, ibi bifatwa nk'uburyo bwa nyuma.

Ibintu ugomba kuzirikana mu gihe ubana n'indwara ya EDS

Kubana na EDS bivuze ko ugomba kwita ku mubiri wawe cyane. Ibi bintu bishobora kugufasha kwirinda impanuka.

• Irinde siporo igoye:Irinde siporo zikora ku mubiri n'imyitozo ngororamubiri ishyira igitutu kinini ku ngingo, nko kwiruka.
• Ntugaterure ibiremereye: Guterura ibiremereye byongera ibyago byo kuvunika ingingo no gukomereka.
• Rinda uruhu rwawe: Koresha amasabune yoroheje. Siga amavuta yo kwisiga ku zuba buri munsi. Ambara udupira two kwirinda ahantu nko mu mavi no mu nkokora.
• Wite ku menyo yawe: Koresha uburoso bw'amenyo bufite amenyo yoroshye.
• Ubuzima bwo mu mutwe: Kubana n'indwara nk'iyi igihe kirekire bishobora kunaniza amarangamutima. Kuganira n'umujyanama cyangwa kujya mu itsinda ry'abaterankunga bafite ibitekerezo nk'ibyabo bishobora gufasha cyane.

Niba urimo gutekereza gushinga umuryango, ushobora kuvugana n'umujyanama mu by'imiterere y'umubiri kugira ngo usobanukirwe ingaruka zo kwanduza iyi ndwara abana bawe.