Ese nawe ukunda kuva amaraso mu mazuru? Bishobora kuba ari HHT (Hereditary Hemorrhagic Telangiectasia)!

Ese ukunze kuva amaraso mu mazuru? Cyangwa wabonye utudomo duto dutukura ku bice bimwe na bimwe by'umubiri wawe, urugero, ku maso, ku minwa, cyangwa ku ntoki? Hari igihe tudafata ibi nk'ibintu bisanzwe, ariko inyuma yabyo hashobora kuba hari indwara ikeneye kwitabwaho. Ni cyo HHT ari cyo, ariko abantu benshi ntibakizi. Uyu munsi turimo kuvuga kuri iyi HHT, cyangwa mu buryo bw'ubuvuzi, `(Hereditary Hemorrhagic Telangiectasia)`, indwara ikomoka ku rubyaro. Bamwe banayita `(Osler-Weber-Rendu syndrome)`.

HHT ni iki mu by'ukuri?

Muri make, HHT ni indwara iterwa n’uturemangingo tw’amaraso mu mibiri yacu. Urabizi, dufite utu tunyangingo duto dutwara amaraso mu mibiri yacu, twita imiyoboro y’amaraso. Muri iki kibazo, ikibaho ni uko iyi miyoboro y’amaraso, cyane cyane iyo mito cyane yitwa imiyoboro y’amaraso, idakura neza. Tuyita iyi miyoboro y’amaraso idasanzwe "telangiectasias".

Tekereza nawe, dufite imitsi minini itwara amaraso mu mutima wacu ikayajyana mu mubiri wacu wose, hamwe n'imitsi itwara ayo maraso ikayajyana mu mutima. Isano iri hagati y'iyi mibiri ikorwa n'ibyo bita capillaries. Muri HHT, rimwe na rimwe iyi mitsi n'imitsi bishobora kugira aho bihurira bitanyuze mu mitsi. Ibi tubyita malformations y'imitsi, cyangwa AVM mu magambo ahinnye.

Iyi mitsi idasanzwe y'amaraso irakomeye cyane kandi iracikagurika. Ishobora guturika cyangwa gucika byoroshye, bigatera kuva amaraso (kuva amaraso menshi). Ibimenyetso n'ingorane biterwa n'aho kuva amaraso bibera.

Ni nde ushobora guteza imbere HHT?

Iyi ndwara yitwa HHT ishobora kwibasira abagore, abagabo, ndetse n'abana bato . Ubwoko, idini, n'ibara ry'uruhu ntabwo bifitanye isano na byo. Ahanini ni uko ihererekanywa kuva ku gisekuru kugeza ku kindi binyuze mu ngirabuzimafatizo, iyo hari umuntu wo mu muryango uyirwaye, abandi nabo baba bafite amahirwe yo kuyirwara.

Iyi ndwara ifatwa nk'idasanzwe. Ariko, akenshi ntipimwa neza. Ibi bivuze ko nubwo bivugwa ko umuntu umwe ku bantu 5.000 ku isi arwaye iyi ndwara, abenshi muri bo ntibazi ko bayirwaye.

Ni iki gitera HHT?

Nkuko nabivuze mbere, HHT ni indwara iterwa n’uturemangingo gusa . Ibi bivuze ko ikomoka ku babyeyi ku bana. Ifatwa nk'"indwara ikomeye". Muri make, umwana ashobora kuyirwara nubwo umubyeyi umwe gusa, nyina cyangwa se, ari we uvukana iyo gene idasanzwe .

Abahanga mu bya siyansi bavumbuye impinduka amagana zitandukanye mu turemangingo dutandatu dufitanye isano na HHT. Ariko, ubu, impinduka zikunze kugaragara ni mu turemangingo tubiri twitwa ENG na ACVRL1. Abahanga mu bya siyansi baracyakora ubushakashatsi kuri ibi.

Ni ibihe bimenyetso bya HHT?

Ibimenyetso bya HHT bishobora gutandukana cyane bitewe n'umuntu ku wundi. Biterwa n'aho imitsi y'amaraso idasanzwe navuze iherereye mu mubiri. Hari abantu bashobora kuba badafite ibimenyetso bikomeye. Ariko abandi bashobora kugira ibimenyetso bikomeye cyane.

Ariko, ikimenyetso gikunze kugaragara mu bantu barwaye HHT ni ukuva amaraso kenshi mu mazuru (epistaxis) . Hari abantu bashobora kuva amaraso mu mazuru inshuro nyinshi ku munsi. Iki kibazo gishobora kuba cyarabayeho kuva mu bwana.

Byongeye kandi, bamwe mu bantu barwaye HHT bashobora kubona utudomo duto dutukura (telangiectasias) ku mibiri yabo. Utwo tudomo dushobora kugaragara nk'aho twahinduye ibara gato kuri wewe. Utwo tudomo dukunze kugaragara kuri:

• Ku isura
• Mu ntoki cyangwa mu biganza
• Mu maboko
• Imbere mu kanwa (ku rurerure rw'umunwa)
• Ku munwa
• Iruhande rw'izuru

Uretse ibi, bamwe mu bantu barwaye HHT bashobora no kugira ibi bikurikira:

• Anemia : Ibi bivuze kubura uturemangingo dutukura mu mubiri. Ibi bishobora guterwa no kuva amaraso kenshi.
• Kuva amaraso mu nda cyangwa mu mara : Ibi bishobora kutagaragara, ariko hashobora kuba hari amaraso mu mwanda cyangwa umwanda ukaba umukara.

Indwara z'imitsi yo mu mitsi (AVM) n'ingaruka zazo

Abantu barwaye HHT rimwe na rimwe bashobora kurwara aneurysms (AVM) mu mitsi minini y'amaraso. Izi AVM zishobora cyane cyane mu ngingo nk'ibihaha, ubwonko, uruti rw'umugongo n'umwijima. Hanyuma zishobora gutera ibimenyetso bitandukanye bijyanye na buri rugingo.

• Niba ufite AVM mu bihaha byawe:
• Guhinduka kw'uruhu rw'umukara (cyane cyane iminwa, inzara)
• Gukorora amaraso (hemoptysis)
• Kumva unaniwe vuba
• Guhumeka bigoranye (dyspnea)
• Niba ufite `(AVM)` mu bwonko: Izi ni zo ziba ziteje akaga gato. Kuko iyo imwe muri izi `(AVM)` ituritse mu bwonko, biba bikomeye cyane.
• Kuzungera
• Kureba kabiri
• Indwara zo mu mutwe
• Ibintu bisa n'ibicurane bishobora kubaho.
• Niba ufite AVM z'umwijima:
• Umutima ushobora kugira ikibazo cyo "gutsindwa k'umutima" kuko iyo amaraso yihuta cyane mu mwijima, umutima uba ugomba gukora cyane kugira ngo utange amaraso mu mubiri wose.
• Niba ufite imiti igabanya ubukana bw'umugongo (AVM):
• Kubabara umugongo
• Gucika intege cyangwa kubura ibyiyumvo mu biganza cyangwa ibirenge bishobora kubaho.

Icy'ingenzi: Iyo izi "(AVM)" zituritse zigasohoka amaraso, ni ikibazo gikomeye cyane. Kubwibyo, niba ufite kimwe mu bimenyetso byavuzwe haruguru, ni ngombwa cyane gushaka inama kwa muganga byihuse.

Ese abana banjye nabo bashobora kugira HHT?

Yego, niba ufite HHT, buri mwana wawe afite amahirwe angana na 50% yo kurwara iyi ndwara.Yego. Ibyo bivuze ko buri gihe umwana avutse, hari amahirwe angana na 50% ko umwana azarwara HHT n'amahirwe angana na 50%. Ni nko kuzunguza igiceri ugafata imitwe cyangwa imirizo.

Ni gute HHT ipimwa?

Gupima imiterere y’uturemangingo bishobora gukorwa kugira ngo hemezwe HHT. Ariko akenshi, abaganga bayisuzuma bashingiye ku makuru y’ubuvuzi, nk'ibimenyetso n'amateka y'umuryango. Iyo ugiye kwa muganga, akenshi bakora ibi bikurikira:

• Bazakubaza ibibazo birambuye ku bijyanye n'amateka yawe bwite y'ubuvuzi (urugero: umaze igihe kinini uva amaraso mu mazuru, inshuro zingahe, n'ibindi bibazo wagize).
• Baza amateka y'ubuzima bw'umuryango wawe wa hafi (ababyeyi, abavandimwe, abana) kuko ibi bikorwa mu miryango.
• Umubiri wawe uzasuzumwa (kugira ngo harebwe niba hari utudomo dutukura cyangwa ibindi).
• Niba bibaye ngombwa, ohereza ibizamini (urugero: ubwoko bwa `(scan)`, `(Endoscopy)`) kugira ngo urebe uko ingingo z'imbere zimeze .

Muganga ashobora gukeka cyangwa akamenya ko ufite HHT niba ufite nibura ibimenyetso bitatu muri ibi bikurikira:

• Kuva amaraso mu mazuru kenshi.
• Kuba hari telangiectasias nyinshi mu bice bikunze kugaragara ku ruhu (nk'isura, iminwa, intoki).
• Kuba hari ``telangiectasias'' cyangwa ``AVM'' mu ngingo z'imbere (urugero: ibihaha, ubwonko, igifu, amara) (ibi biboneka gusa binyuze mu bipimo).
• Kugira umuntu wo mu muryango wa hafi ufite HHT.

Ni ubuhe buryo bwo kuvura HHT?

Ikibabaje ni uko nta muti wa HHT uhari. Ariko, hari uburyo bwo kuvura bushobora gufasha mu kugenzura ibimenyetso, kugabanya ibimenyetso, no kugabanya ibyago byo kugira ingorane zikomeye. Abahanga mu bya siyansi baracyakora ibishoboka byose kugira ngo bashake uburyo bwo kuvura HHT, cyane cyane hamwe n’iterambere ry’uburyo bwo kuvura indwara zigabanya ubukana bw’indwara.

Mu gihe umuganga wawe arimo kuvura ibimenyetso bisanzwe, azasuzuma kandi niba hari ibibazo bifitanye isano na HHT bishobora kuba bitaragaragaza ibimenyetso.

Ubuvuzi bushobora kuba bukubiyemo ibi bikurikira:

• Uburyo bwo kuvura hakoreshejwe laser (`(Ablation)`): Kubaga gato hakoreshejwe laser kugira ngo bihagarike kuva amaraso ahantu (telangiectasias) hashobora kuva amaraso.
• Embolization: Kubaga gato gafunga imitsi y'amaraso ikagera aho amaraso ava cyangwa AVM ishobora kuva amaraso.
• Kuvura amaraso make: Gutanga ibinini bya fer, no gutanga amaraso (guterwa amaraso) bibaye ngombwa.
• Kugira ngo ugenzure kuva amaraso mu mazuru: Koresha imiti nk'amavuta yo kwisiga n'amavuta yo mu bwoko bwa saline spray kugira ngo imbere mu mazuru hagume hatose.
• Gukuraho AVM: AVM zimwe na zimwe zishobora gukurwaho hakoreshejwe ubuvuzi bw'imirasire cyangwa kubagwa.
• Uburyo bwo kuvura indwara ziterwa na angina: Ubu buryo bushobora gutangwa nk'imiti cyangwa ibinini.

Ushobora kandi kubonana n'inzobere mu kuvura uturemangingo tw'umubiri runaka, nk'umwijima, ibihaha, uturemangingo tw'igifu n'ubwonko.

Ese HHT ishobora kwirindwa?

Kubera ko ari indwara iterwa n’uturemangingo, nta buryo bwo kwirinda HHT cyangwa kugabanya ibyago byo kuyirwara. Ariko, niba ababyeyi bawe, abavandimwe bawe, cyangwa abana bawe bafite HHT, ni ngombwa kubibwira muganga wawe. Ibi bishobora kugufasha kumenya niba ufite iyi ndwara hakiri kare, gutangira kuvurwa hakiri kare, no kwirinda ingorane.

Ni iki icyerekezo cy’abantu bafite HHT?

Abantu barwaye HHT bashobora kubaho ubuzima busanzwe. Ariko, AVM n'amaraso adashira mu bihaha no mu bwonko ni bibi cyane kandi bisaba kuvurwa. Iyo abantu benshi bafashwe neza, bashobora kubaho ubuzima busanzwe.

Ni iki wakora ku ndwara yo kuva amaraso mu mazuru iterwa na HHT?

Kuva amaraso mu mazuru bikunze kugaragara muri HHT, bityo hari ibintu bike wakora kugira ngo ubikumire:

• Irinde gukoresha imiti imwe n'imwe, cyane cyane imiti igabanya ububabare nka aspirine na NSAIDs (urugero: ibuprofen, diclofenac). Iyi miti ishobora kugabanya amaraso no kongera amaraso. Baza muganga wawe mbere yo gufata umuti uwo ari wo wose.
• Andika mu ikaye yawe. Andika ibyo kurya urya n'ibikorwa ukora bitera kuva amaraso mu mazuru. Hanyuma ushobora kwirinda ibyo bintu.
• Komeza imbere mu mazuru yawe habe ubushuhe kandi hagashyirwa amavuta. Ibi bishobora gukorwa hakoreshejwe icyuma gifasha guhumeka, gusiga amavuta asabwa na muganga wawe, cyangwa gukoresha spray y'amazi mu mazuru. Izuru ryumye rishobora kuva amaraso menshi.

Ni iki kindi nabaza muganga wanjye ku bijyanye na HHT?

Niba usanzwe urwaye HHT, ni byiza kubaza muganga wawe ibibazo nk'ibi:

• Ese abandi bo mu muryango wanjye bagomba gupimwa ibi?
• Ese nshobora gukina siporo? Ni iyihe mikino myiza n'iyihe idakwiye?
• Ese hari ibikorwa byihariye nkwiye kwirinda?
• Ese hari inzoga, ibiryo byihariye, cyangwa indi miti ngomba kwirinda?
• Ni iki nakora kugira ngo ngire kuva amaraso mu mazuru cyangwa ngo mbihagarike vuba?
• Ese nta kibazo mfite cyo gutwita? Ese hari ibintu byihariye ngomba kumenya?
• Niba numvise amaraso, ni ryari nkwiye kwihutira gushaka ubuvuzi?

Amaherezo, icyo kwibuka

HHT ni indwara iterwa n'uturemangingo akenshi ntimenyekane. Ibimenyetso bishobora kuva ku kuva amaraso kenshi mu mazuru kugeza ku ngorane zikomeye zigira ingaruka ku mikorere y'umubiri myinshi. Niba ukeka ko wowe cyangwa umuntu wo mu muryango wawe afite HHT, nyamuneka vugana na muganga.Kuvurwa hakiri kare bishobora gufasha gukumira ingorane. Gupima imiterere y'umubiri bishobora kandi gufasha kumenya niba abandi bagize umuryango bagizweho ingaruka n'iyi ndwara. Guhora umenye amakuru ni cyo kintu cy'ingenzi cyane mu bihe nk'ibi.

HHT , Telangiectasia yo mu maraso, Osler-Weber-Rendu syndrome, kuva amaraso mu mazuru, imiyoboro y'amaraso, indwara z'uturemangingo, AVM, telangiectasia