Ese wigeze ubona ko ingingo zawe zigorama kandi zigenda buhoro kurusha inshuti zawe? Cyangwa uhura n'ibikomere ndetse n'iyo ugeze ahantu hato? Ushobora gutekereza uti "Oh... uko ni ko umubiri wanjye umeze, nameze gutya kuva nkiri umwana." Ariko ibi rimwe na rimwe bishobora kuba ibimenyetso by'indwara tutavugaho cyane, ariko tugomba kumenya neza. Uyu munsi tugiye kuvuga kuri imwe muri izo ndwara, Ehlers-Danlos Syndrome, cyangwa EDS mu magambo ahinnye.
Mu magambo make, Ehlers-Danlos Syndrome (EDS) ni iki?
Tekereza umubiri wacu nk'inyubako yubatswe neza. Ibintu byose biri muri iyi nyubako, harimo amatafari, inkuta n'igisenge, bifatanye kandi bigakomera na sima. Mu buryo nk'ubwo, ingingo z'umubiri wacu, amagufwa, imitsi n'uruhu bifatanye, bigashyigikirwa, kandi bigakomera n'urusobe rwihariye rw'ingingo. Izi ngingo twita ingingo zihuza .
Intwari nyamukuru y'iyi ngingo ni poroteyine yitwa kolajeni . Ni nk'isima. Iyi kolajeni ni yo iha uruhu rwacu, ingingo zacu n'imiyoboro y'amaraso imbaraga n'ubudahangarwa.
Dore ibibera mu mubiri w'umuntu urwaye Ehlers-Danlos Syndrome (EDS): Hariho impinduka mu miterere y'umubiri mu buryo umubiri we ukora iyi poroteyine yitwa kolajeni. Kolajeni ikorwa ntabwo ikomeye bihagije, nk'isima ishaje. None se bigenda bite? Ni nk'aho inyubako irimo gucika intege, ingingo zihuza umubiri zirimo gucika intege. Bityo bishobora kugira ingaruka ku bice byinshi by'umubiri.
- Amaraso n'imitsi y'amaraso
- Amagufwa (amagufwa)
- Cartilage (urugingo rworoshye ruri hagati y'amagufwa)
- Ibinure
- Aho bahurira (aho bahurira)
- Imitsi
- Uruhu
Ese hari ubwoko bw'ingenzi bwa EDS?
Yego, EDS si imwe kuri buri wese. Iyi ndwara igabanyijemo amoko 13 y'ingenzi bitewe n'uko igira ingaruka ku mubiri n'ibimenyetso byayo. Ariko uyu munsi tugiye kuvuga ku bwoko bumwe busanzwe cyane wagakwiye kumenya by'umwihariko.
| Izina ry'ubwoko bwa EDS | Intangiriro ngufi |
|---|---|
| Hypermobile EDS | Ubu ni bwo bwoko bukunze kugaragara cyane. Ingingo zabo zirahindagurika cyane kandi zirekuye. Ziba zisa n'aho 'zifunze'. Ingingo zikunze gukora ijwi rya 'click' kandi zishobora gucika byoroshye. |
| EDS ya kera | Ibi bisa n'ubwoko bwavuzwe haruguru, ariko bigira ingaruka ku ruhu kurusha ingingo. Uruhu ni ruto cyane, rufite umupira, kandi rushobora gushwanyagurika no gukomereka byoroshye. |
| EDS isa n'iya kera | Nkuko izina ribigaragaza, bisa cyane na Classical EDS, ariko hari itandukaniro rito mu bimenyetso. Muganga ni we wenyine ushobora kubisuzuma. |
| EDS y'umutima n'imitsi | Ibi bishobora kugira ingaruka ku mikorere y'umutima n'imitsi y'umutima, ndetse bigatera ibimenyetso ku ruhu no ku ngingo. |
| EDS y'imitsi | Ubu bwoko ni ubw’imburagihe kandi buteje akaga. Bugira ingaruka ku mitsi y’amaraso n’ingingo z’imbere kurusha ingingo. Inkuta zazo zirakomeye kandi zishobora guturika cyangwa gucika byoroshye. Ubu ni indwara isaba kwitabwaho byihutirwa. |
Ni ibihe bimenyetso bisanzwe bya EDS?
Noneho ushobora kuba urimo gutekereza uti "Sinzi niba nanjye mfite iki kibazo." Reka turebe ibimenyetso bikunze kugaragara by'iyi ndwara. Ariko ibuka ikintu kimwe, kuba ufite kimwe cyangwa bibiri muri ibi bimenyetso ntibivuze ko ufite EDS . Ibi bimenyetso bishobora no kugaragara no mu zindi ndwara. Kubwibyo, ikintu cyiza cyo gukora ni ukujya kwa muganga niba ufite gushidikanya no gusuzuma indwara neza.
| Ibimenyetso | Mu magambo make ... |
|---|---|
| Ingorane zigendagenda cyane | Ingingo zigorama cyane kuruta uko bisanzwe. Bamwe bazita 'ingingo ebyiri'. Ingingo nk'urutugu, ivi n'intoki zihora zigenda. |
| Uruhu rurerure kandi rworoshye | Uruhu ruraryoshye cyane, rumeze nk'urudodo rwa velvet. Kandi nk'umupira w'ifu ya pizza, ushobora kuyirambura uko ushaka, igasubira aho yari iri igihe wayirekuraga. |
| Uruhu rworoshye n'inkovu | Ndetse n'igikomere gito bifata igihe kirekire kugira ngo gikire. Gikomere byoroshye, kandi rimwe na rimwe inkovu ziragabanuka zigasa n'izihinduye ibara. |
| Gukomeretsa byoroshye | Hari igihe ibikomere by'ubururu bigaragara ku mubiri nubwo nta kintu na kimwe cyakubiswe. Nubwo wabikubita ahantu runaka gato, bizahinduka ubururu. |
| Ububabare bw'ingingo n'imitsi | Hari ububabare buhoraho, nk'ububabare, mu ngingo no mu mitsi. Ubu bubabare buraza bugashira. |
| Umunaniro udashira | Kumva unaniwe kandi nta buzima ufite umunsi wose ndetse no nyuma yo gusinzira neza. |
| Ibibazo by'igogora | Ushobora kugira ikibazo cyo kubabara mu gifu, kubyimba inda, kuribwa mu nda, nibindi. Hari abantu bashobora kurwara indwara nka Irritable Bowel Syndrome (IBS). |
| Ingaruka zo kurwara Hernia | Ingaruka zo kurwara hernia ziri hejuru kuko ingingo zihuza imitsi ziba zidakomeye. |
Ni iki gitera EDS? Ese yandura?
Oya, EDS si ikintu gishobora kwanduzwa umuntu umwe . Ni indwara y’uturemangingo gusa. Ni ukuvuga ko iterwa n’impinduka mu turemangingo tw’uturemangingo. Iyi nenge ibaho mu turemangingo tutwigisha gukora poroteyine ya kolajeni twavuze mbere.
Impuguke zagaragaje impinduka zitandukanye zirenga 20 mu ngirabuzimafatizo zitera EDS. Impinduka mu ngirabuzimafatizo ufite ni zo zigena ubwoko bwa EDS n'ibimenyetso ugaragaza.
Hari ubwoko bwa EDS bushobora kuragwa n'ababyeyi ku bana. Ibi bivuze ko niba umwe mu babyeyi afite iyo ndwara, hari amahirwe ko n'abana bazayirwara. Ariko, hari ubwoko bushobora no kubaho mu buryo bw'umubiri, nta mateka y'umuryango.
Niba hari umuntu wo mu muryango wawe ufite iyi ndwara, cyangwa niba ufite ibimenyetso bisa, ni ngombwa cyane kuvugana na muganga, kandi nibiba ngombwa, ugashaka inama ku bijyanye n'imiterere y'umubiri .
Ni izihe ngorane zishobora guterwa na EDS?
Ingorane ikunze kugaragara muri iyi ndwara ni ugucika kw'ingingo . Ibi bishobora kuba ibintu bibabaza cyane. Hari ikintu cy'ingenzi cyane twese tugomba kwibuka hano.
Niba ucitse ingingo, ntukagerageze kongera kuyifata ubwawe cyangwa ngo undi muntu ayikore! Ibi bizatera gusa kwangirika gukomeye ku ngingo, ku ngingo ziyikikije, no ku mitsi. Ikintu cyiza cyo gukora ni ukujya mu bitaro bikuru byihutirwa (ETU) biri hafi yawe vuba bishoboka.
Mu buryo bumwe na bumwe bukomeye, nka EDS y'imitsi, hashobora kubaho ingorane zishobora gushyira ubuzima mu kaga. Urugero, imitsi y'amaraso ishobora guturika, bigatera kuva amaraso mu mubiri ndetse n'indwara zikomeye nka stroke .
Izindi ngorane zishobora kuba zirimo:
- Indwara ya Scoliose
- Ibibazo by'imitsi y'umutima
- Ibibazo by'amenyo n'ishinya
- Amaguru apfukamye
Kuvura no gucunga EDS
Mbere na mbere, nta muti uraboneka wa EDS. Ariko ntugahangayike. Ushobora kugenzura ibimenyetso byawe, ukirinda ingorane, kandi ukabaho ubuzima busanzwe kandi bwiza. Intego nyamukuru yo kuvura ni ukugenzura ibimenyetso byawe.
- Ubuvuzi bw'umubiri: Ibi ni ingenzi cyane. Imyitozo ngororamubiri ikomeza imitsi ikikije ingingo ishobora gufasha kugabanya ububabare n'ubukomere bw'ingingo.
- Kwambara ibyuma byihariye:Muganga wawe ashobora kukugira inama yo gukoresha ibyuma byihariye kugira ngo bigufashe kurushaho no kurinda ingingo zidakomeye.
- Kwita ku ruhu by’umwihariko: Kubera ko uruhu rufite ubushobozi bworoshye bwo kwisiga, ni ngombwa kururinda ukoresheje amavuta yo kwisiga izuba iyo ugiye ku zuba kandi ugakoresha amasabune yoroshye kandi adakarira.
Nanone, ni byiza kwirinda ibintu bimwe na bimwe bishobora kwangiza ingingo.
- Guhuza siporo
- Imyitozo ngororamubiri ikora ku ntera nini (kwiruka, gusimbuka, n'indi myitozo ikora ku ntera nini)
- Guterura ibiremereye
Ibi ntibivuze ko udashobora gukora imyitozo ngororamubiri na gato. Ushobora kuvugana na muganga wawe ku myitozo ngororamubiri ikwiriye umubiri wawe kandi itakwangiza ingingo zawe, nko koga cyangwa kugendera ku igare.
Kubana na EDS bishobora kugorana rimwe na rimwe. Kubabara no kunanirwa buri gihe bishobora kugutera agahinda. Ibyo ni ibisanzwe. Ariko ushobora gusobanukirwa aho udashobora kunyura, ugahindura ibikenewe, kandi ugakomeza gukora ibintu ukunda. Tega amatwi umubiri wawe. Niba ubonye impinduka mu bimenyetso byawe cyangwa uko wiyumva, ntutinye kuvugana na muganga wawe.
Ubutumwa bwo kujyana mu rugo
- Ehlers-Danlos Syndrome (EDS) ni indwara iterwa n'ibura rya poroteyine ya kolajeni.
- Ibimenyetso by'ingenzi ni ukunamuka cyane no gusimbuka kenshi mu ngingo, uruhu rurushaho gukomera no gukomereka byoroshye.
- Nubwo idashobora gukira burundu, ibimenyetso bishobora gukemurwa neza hakoreshejwe ubuvuzi bw'umubiri, guhindura imibereho, no kugirwa inama zikwiye n'abaganga.
- Niba wavumbutse ingingo, ntukagerageze kuyisana ubwawe, ahubwo jya mu cyumba cy’ubutabazi bw’ibanze cy’ibitaro (ETU) ako kanya.
- Niba ufite ibi bimenyetso cyangwa ufite amateka y'umuryango, ni ngombwa cyane kubonana na muganga wawe kugira ngo akumenye neza kandi akugire inama.
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