Ese imitsi yawe iravunika byoroshye? Ese uruhu rwawe ruranutse cyane? Reka twite ku ndwara ikomeye ya Vascular Ehlers-Danlos Syndrome (vEDS)!

Ese hari igihe ujya ubona ibara ry'ubururu rinini ku mubiri wawe ndetse no nyuma yo kugira ikibyimba gito? Cyangwa uruhu rwawe ruragabanuka cyane ku buryo imitsi yawe igaragara? Ibi rimwe na rimwe bishobora kuba ibimenyetso by'indwara idakunze kugaragara ariko ikomeye cyane, nubwo rimwe na rimwe tutabyitaho cyane. Uyu munsi tugiye kuvuga ku ndwara nk'iyo, indwara igabanya intege nke z'imitsi y'umubiri, cyane cyane imiyoboro y'amaraso. Iyi ndwara yitwa Vascular Ehlers-Danlos Syndrome , cyangwa (vEDS) mu magambo ahinnye. Nubwo ibi bisa nkaho bigoye gato, reka tubisobanukirwe mu buryo bworoshye.

Ehlers-Danlos Syndrome (EDS) ni iki? Ese ubwoko bw'imitsi buteye akaga?

Mu magambo make, Ehlers-Danlos Syndrome (EDS) ni itsinda ry'indwara ziterwa n'uturemangingo zigira ingaruka ku ngingo zihuza imibiri yacu. Noneho ushobora kwibaza uti “ingingo zihuza umubiri ni izihe?” Ni ibintu bihuza imibiri yacu kandi bikayiha imbaraga. Urugero, ibintu nk'imitsi, imitsi, na cartilage. Ibi nibyo biha imibiri yacu ishusho, imbaraga, no koroherwa.

Hari ubwoko bwa EDS bugera kuri 13. EDS y'imitsi (vEDS) tuvuga uyu munsi ni ubwoko bwa kane (`(Ubwoko bwa IV)`). Ubu ni bwo bwoko bwa EDS budasanzwe kandi bukomeye cyane . Abantu bafite iyi ndwara bafite imitsi y'amaraso idakomeye cyane, ni ukuvuga imitsi itwara amaraso, n'ingingo z'imbere muri zo (`(ingingo z'imbere)`) zidakomeye cyane kandi zishobora kwangirika byoroshye. Ni nk'ikirahure gito, gishobora gusenyuka n'ikintu gito cyane.

Ni nde ushobora kugira iyi ndwara? Ni ku rugero rungana iki?

Kubera ko iyi ari indwara iterwa n’uturemangingo , akenshi iragwa n’umubyeyi umwe cyangwa bombi. Ibyo bivuze ko ari indwara ikomoka ku murage. Ariko, rimwe na rimwe, nubwo nta muntu n’umwe mu muryango wigeze agira iyi ndwara mbere, umuntu ashobora kuyirwara binyuze mu guhinduka kw’iyi gene mu buryo butunguranye.

EDS ni indwara idakunze kugaragara muri rusange. Ifata umuntu umwe ku bantu 5.000. Tekereza ukuntu ubu bwoko bwa EDS (vEDS) bukunze kugaragara. Ifata umuntu umwe ku bantu 200.000 cyangwa 250.000 . Ntibitangaje rero kuba abantu benshi batabizi.

Ibi bigira ingaruka zite ku mubiri?

Indwara ya Ehlers-Danlos Vascular Syndrome (vEDS) ni indwara ituma ingingo z'umubiri, cyane cyane imiyoboro y'amaraso (imitsi) n'ingingo z'imbere, zitakaza imbaraga n'ubushobozi bwazo bworoshye . Ibi bishobora gutuma abantu bakomereka byoroshye kandi bakagira ibyago byinshi byo kuva amaraso imbere mu mubiri bitewe n'ibikomere.

Tekereza nawe, agahu gato ku mutwe si ikintu gikomeye ku muntu usanzwe. Ariko ku muntu ufite iyi ndwara, umuyoboro w'amaraso imbere ushobora guturika, cyangwa urukuta rugacikamo ibice (arterial dissection). Ni nk'umuyoboro ushaje wa kabutura, witeguye guturika ku gitutu gito cyane.

Ni ibihe bimenyetso bya EDS y'imitsi?

Nubwo ibimenyetso by'iyi ndwara bishobora gutandukana bitewe n'umuntu ku wundi, hari ibimenyetso bimwe na bimwe biboneka. Reka turebere hamwe ibyo ari byo:

• Impinduka z'uruhu:
• Uruhu rurakomera cyane , rurabengerana, kandi rworoshye , bigatuma imitsi yo ku mubiri igaragara neza.
• Hari ahantu hamwe na hamwe, cyane cyane ku biganza no ku birenge, hasa nkaho hashaje vuba kurusha ahandi.

• Ibiranga isura byihariye:
• Iminwa n'amazuru by'abantu barwaye iyi ndwara bishobora kwangirika bidasanzwe .
• Agasaya gato .
• Amaso ni manini kandi atandukanye gato .
• Hari abantu bafite amaso make cyane, cyangwa nta na kimwe bafite .
• Uduce tw'amatwi ni duto cyane, cyangwa hafi ya two ntaho tuba . Amatwi yombi aherereye kure gato y'umutwe kandi ashobora kugaragara nk'aho agaragara imbere.

• Ibibazo by'imitsi inyuranamo amaraso:
• Umubiri urakomereka byoroshye . Nubwo wakubitwa n'ikintu gito, uhura n'utudomo twinshi tw'ubururu.
• Imitsi y'imitsi ishobora kugaragara umuntu akiri muto kurusha uko bisanzwe.
• Ibihe bikunze kugaragara ku birebana n'umuvuduko ukabije w'amaraso (hypertension) n'ibibazo by'imitsi y'umutima (urugero: prolapse ya mitral valve ).
• Hari ibyago byinshi byo gukomereka kw'imitsi. Ibi birimo nko gucibwamo imitsi . Ibi bishobora gutera indwara z'imitsi itera ubwoba (kugabanuka kw'inkuta z'imitsi y'amaraso no kwigaragaza kw'inyuma) cyangwa gucika.

• Intege nke z'ingingo z'imbere:
• Ingorane zikomeye zishobora kubaho, nko kugwa kw'ibihaha (pneumothorax) no gucika kw'ingingo z'imbere, bigatera kuva amaraso menshi.

• Impinduka mu magufwa:
• Igituza cyarohamye (pectus excavatum) gishobora kugaragara.
• Bishobora kuba bigufi kuruta ibisanzwe.

Kuki iki kibazo kibaho? Impamvu ni iyihe?

Twavuze ko iyi ari indwara iterwa n’uturemangingo. Ibyo bivuze ko bibaho bitewe n’impinduka (`(mutation genetique)`) muri gene iri muri ADN yacu . Tekereza nawe, ADN yacu ni nk'igitabo cy'amabwiriza yubaka kandi ikagenzura umubiri. Uturemangingo n'ingingo zacu bikora nk'uko bivugwa muri iki gitabo cy'amabwiriza. Impinduka mu turemangingo ni nk'ikosa muri iki gitabo cy'amabwiriza. Ariko umubiri ukurikiza ayo mabwiriza atari yo uko byagenda kose.

Indwara ya Ehlers-Danlos y'imitsi (vEDS) iterwa n'impinduka mu ngirabuzimafatizo ikora poroteyine yitwa collagen III . Ubusanzwe, imibiri yacu ikoresha iyi collagen III kugira ngo ikomeze ingingo zimwe na zimwe n'imiterere yazo. Ariko kubera iyo mpinduka mu ngirabuzimafatizo, umubiri ntukora collagen III ihagije, cyangwa collagen III ikorwa ifite inenge. Bityo ntabwo iha ingingo imbaraga zikenewe.

Kubera ko ari indwara iterwa n’uturemangingo (genetic), umuntu uyirwaye ashobora kuyitera abana be.Iyo umwe mu babyeyi afite iyi ndwara, hari amahirwe 50% ko umwana azayiragwa buri gihe cyo gutwita. Iyo ababyeyi bombi bafite iyi ndwara, umwana afite amahirwe 100% yo kuyiragwa.

Ese ibi byandura?

Oya. Iyi si indwara ishobora kwanduzwa umuntu umwe ijya ku wundi. Iyi ni indwara ivukanwa binyuze mu ngirabuzimafatizo.

Iyi ndwara ipimwa ite?

Umuganga ashobora gukeka ko ufite indwara ya Vascular Ehlers-Danlos Syndrome (vEDS) bitewe n'amateka y'ubuzima bwawe, isuzuma ry'umubiri, ibimenyetso, ndetse niba hari umuntu wo mu muryango wawe ufite iyo ndwara. Iyo habayeho gushidikanya, hakorwa isuzuma ry'uturemangingo kugira ngo hemezwe cyangwa hakamenyekana ko bishoboka. Kubera ko hari impinduka ebyiri z'ingenzi mu turemangingo (ubu zagaragajwe) zitera iyo ndwara, isuzuma ry'uturemangingo ni bwo buryo bwonyine bwo gusuzuma neza.

Ni ubuhe bwoko bw'ibizamini bikorwa?

Kubera ko ari indwara idakunze kugaragara, abaganga bashobora gukora ibindi bipimo byinshi mbere yo gupima imiterere y'umubiri. Urugero, bashobora gukora echocardiogram (gupima umutima) cyangwa CT scan . Ibi bizamini bikorwa mbere yo gukuraho izindi ndwara z'amaraso zishobora gutera kuva amaraso menshi cyangwa gukomereka byoroshye. Ariko, gupima imiterere y'umubiri ni byo byonyine bishobora kwemeza neza niba ufite Vascular Ehlers-Danlos Syndrome (vEDS).

Uburyo bwo kuvura ni ubuhe? Ese bushobora kuvurwa?

EDS y'imitsi si indwara ivurwa. Ni indwara iterwa n'uturemangingo, bivuze ko ari indwara y'ubuzima bwose. Kubera ko idashobora gukira, abaganga bibanda ku kuvura ibimenyetso no kugabanya ingaruka zabyo.

Ni ubuhe bwoko bw'imiti/ubuvuzi bukoreshwa?

Abantu bafite indwara ya Ehlers-Danlos syndrome bafite ibyago byinshi byo kurwara imitsi itera amaraso ku buryo bukabije ( aneurysms ) no kuva amaraso imbere mu mubiri bitewe n’imitsi itera amaraso yacitse. Kubwibyo, niba ufite iyi ndwara, uzakenera gupimwa buri gihe kwa muganga kugira ngo urebe niba ufite aneurysms. Hari igihe biba ngombwa ko ubagwa kugira ngo usane imvune zo mu mutima cyangwa aneurysms.

Iyi ndwara ishobora kandi gutera ingorane zikomeye, ndetse zikanashyira ubuzima mu kaga mu gihe cyo gutwita, nko guturika kw'umura cyangwa kuva amaraso menshi.

Muganga wawe ni we muntu mwiza wo kuganira na we ku miti, uburyo bwo kuvura, n'uburyo bwo kubaga ushobora gukenera. Ashobora gusobanura byose akurikije uburwayi bwawe, aho wakuriye, ndetse n'uburyo ukeneye kwitabwaho.

Ese hari ingorane ziri mu kuvura?

Kubera ko ingingo zawe ziba zifite intege nke cyane bitewe n'iyi ndwara, uba uri mu kaga ko kuva amaraso menshi . Nanone, bishobora kugorana gukira nyuma yo kubagwa, ariko ibi biterwa n'intege nke z'izo ngingo. Muganga wawe ashobora gusobanura neza ingaruka mbi n'ibyago ushobora guhura nabyo.

Ni gute nakwiyitaho/nshobora guhangana n'ibimenyetso?

Indwara yo mu mitsi itera indwara ya EDS ni indwara igoye cyane isaba gukurikiranirwa hafi n'abaganga no kujya kwa muganga kenshi . Ni ikibazo kitoroshye ku buryo udashobora kuvura cyangwa kuvura wenyine udafashijwe na muganga. Kubwibyo, ni ngombwa cyane gukurikiza amabwiriza ya muganga wawe.

Ese hari uburyo bwo gukumira ibi?

Kubera ko indwara ya EDS y’imitsi iterwa n’uturemangingo, nta buryo bwo kuyirinda cyangwa kugabanya ibyago byo kuyirwara. Abantu bafite iyi ndwara bagomba kuvugana na muganga wabo ku birebana n’ubujyanama ku bijyanye n’uturemangingo niba bateganya gutwita cyangwa kubyara. Ibi bizabafasha gusobanukirwa icyo bakwitega mu gihe umwana wabo azagira iyi ndwara.

Ni iki nakwitega mu gihe mfite iyi ndwara? Ni iki kizaba kimeze gite?

Abantu bafite EDS y'imitsi bafite ibyago byinshi byo kugira ibibazo bijyanye no kuva amaraso cyangwa intege nke z'ingingo z'imbere mu mubiri.

Abantu benshi bafite iyi ndwara bazagira nibura ikibazo kimwe gikomeye bafite imyaka 20. Ku myaka 40 , ibyago byo kugira ibibazo bishobora gushyira ubuzima bwabo mu kaga ni hafi 80% . Imibare igaragaza ko hafi kimwe cya kabiri cy'abantu barwaye iyi ndwara babaho kugeza ku myaka 48 .

Ariko ntugatinye kubyumva. Kuko hamwe n’iterambere ry’ubumenyi bw’ubuvuzi, hari uburyo bushya bwo guhangana n’ibi bibazo burimo kugaragara, kandi abantu bashobora kubaho neza kurusha mbere.

Iki kibazo kizamara igihe kingana iki?

EDS y'imitsi ni indwara ibaho kuva umuntu akivuka kandi igakomeza ubuzima bwe bwose.

Nkwiye kwiyitaho nte?

Abantu bafite EDS y'imitsi bagomba kujya kwa muganga buri gihe kugira ngo bakurikirane uburwayi bwabo kandi barebe niba nta kibazo gishya bafite.

Kandi nanone,

• Ugomba kwirinda imikino cyangwa ibikorwa biteje akaga .
• Ugomba kwirinda guterura ibyuma cyangwa ibindi bikorwa bishobora gutuma umuntu akomereka.
• Ni byiza kandi kwirinda kubagwa hifashishijwe uburyo bwo guhitamo bitewe n’uko ibyago byo kuva amaraso menshi n’ibikomere byo mu nda byiyongera.

Ni ryari nkwiye kujya kwa muganga? / Ni ryari nkwiye kujya kwivuza byihutirwa?

Jyana na muganga wawe buri gihe nk'uko ubyifuza. Azakubwira kandi igihe ugomba guhamagara cyangwa kubonana na muganga wawe, ndetse n'igihe ugaragaje ibimenyetso.

Mu gihe cy’impanuka, bivuze ko:

• Niba ufite iyi ndwara, ugomba kwihutira gushaka abaganga niba ubabara cyane nta mpamvu igaragara, cyane cyane mu gituza cyangwa mu nda .
• Nanone, niba ufite igikomere cyo hanze kirimo kuva amaraso menshi cyangwa kirimo kuva amaraso , shaka ubufasha bwihutirwa bwa muganga.

Ubutumwa bwa nyuma bwo kujyana mu rugo

Nibyo koko indwara ya Vascular Ehlers-Danlos Syndrome (vEDS) ni indwara ikomeye kandi iterwa n'uturemangingo. Isaba gukurikiranwa neza n'ubuvuzi. Ibi bishobora kugutera ubwoba, ariko ibuka ko bitewe n'iterambere mu buvuzi no gusobanukirwa iyi ndwara, abantu bafite iyi ndwara ubu bashobora kubaho igihe kirekire kandi neza kurusha uko byari bimeze mu myaka yashize. Kubwibyo, ni ngombwa gukurikiza inama za muganga wawe no kwita ku buzima bwawe. Niba wowe cyangwa undi muntu uzi afite ikibazo kuri ibi, ntutindiganye kuvugana na muganga.

indwara y'imitsi yo mu bwoko bwa ehlers-danlos, veds, ehlers-danlos syndrome, eds, indwara y'uturemangingo, ingingo zihuza, imitsi yoroshye, gukomereka byoroshye, indwara z'uruhu, indwara z'uturemangingo, imitsi y'amaraso