Ese umukobwa wawe afite ibi bimenyetso? Reka tuvuge kuri Triple X Syndrome

Ese wigeze ubona ko umukobwa wawe yitwara mu buryo butandukanye gato n'abandi bana, cyangwa ko afite ikibazo cyo kudakura neza? Cyangwa se, niba uri umugore ukuze, urimo ugorwa no kubona impamvu y'ibibazo bimwe na bimwe by'ubuzima? Uyu munsi tugiye kuvuga ku ndwara y'uturemangingo abantu benshi batari barigeze bumva, ariko ikaba yibasira abakobwa gusa. Yitwa Triple X Syndrome. Ntugahangayike, tuzavuga kuri ibi mu buryo bworoshye ushobora gusobanukirwa.

Syndrome ya Triple X ni iki?

Mu magambo make, Triple X Syndrome ni indwara aho umwana w’umukobwa avuka afite chromosome X imwe y’inyongera mu turemangingo twe, aho kuba chromosome ebyiri zisanzwe za X. Iyi nayo yitwa trisomy X syndrome, cyangwa 47,XXX, nk’uko abaganga bayita.

Tekereza, imibiri yacu igizwe n'uturemangingo duto tubarirwa muri za miriyoni. Buri turemangingo turimo amakuru yacu ya genetiki, nk'uburebure bwacu, ibara ryacu, n'uburyo twakwibasirwa n'indwara. Aya makuru abikwa mu bintu byitwa chromosomes. Ugereranyije, umuntu afite chromosomes 23, cyangwa chromosomes 46. Ibiri muri ibi ni byo bigena igitsina cyacu. Ubusanzwe umugore agira chromosomes ebyiri za X (XX), naho umugabo akagira chromosome imwe ya X na chromosome imwe ya Y (XY).

Ariko, umuntu urwaye indwara ya Triple X Syndrome aba afite chromosomes X eshatu mu turemangingo twayo twose, cyangwa muri tumwe mu turemangingo twayo gusa. Niba hari uturemangingo dufite iyi chromosome X y'inyongera, yitwa 46,XX/47,XXX mosaicism.

Ushobora kuba udafite ibimenyetso bya trisomie X, cyangwa ukaba muremure kurusha abandi. Ushobora kandi kugira ingorane zo kubyara cyangwa kujya mu gihe cyo gucura hakiri kare, ariko ibi ntibibaho kuri buri wese ufite iyo ndwara.

Iyi ndwara ikunze kugaragara gute?

Iyi ndwara ikunze kugaragara ku bakobwa bavutse hagati ya 900 na 1000. Ibi bivuze ko muri Sri Lanka hashobora kuba hari abana nk'abo. Ariko, biragoye kumenya umubare nyawo. Kubera ko abantu benshi bafite iyi ndwara batagira ibimenyetso, ntibashaka kwipimisha.

Ni ibihe bimenyetso by'indwara ya Triple X?

Hari ibimenyetso byinshi bitandukanye mu bantu barwaye Triple X Syndrome. Ushobora kuba udafite ibimenyetso, cyangwa ibimenyetso byawe bishobora kuba byoroheje ku buryo ushobora kutabibona. Cyangwa, ushobora kuba ufite bimwe mu bimenyetso by'umubiri, ibibazo bifitanye isano n'ubwonko, cyangwa izindi ndwara zijyanye na Triple X Syndrome.

Imiterere y'umubiri

Abantu benshi barwaye indwara ya triple X baba barebire kurusha abandi bo mu kigero cyabo. Bashobora kandi kuba barebure kurusha uko abaganga babivuga bitewe n'uburebure bw'ababyeyi babo. Byongeye kandi, hashobora kubaho izindi ndwara nke zigaragara ku mubiri:

• Intera iri hagati y'amaso ni nini kuruta isanzwe ( hypertelorism ).
• Kuba hari agahu gapfundikiye (epicanthal folds) mu mfuruka y'imbere y'ijisho.
• Gupfukama cyangwa kugorama k'urutoki ruto ( clinodactyly ).
• Intege nke z'imitsi ( hypotonia ), bivuze ko hashobora kugabanuka gato imbaraga z'umubiri.

Indwara zijyanye n'imitsi

Bamwe mu bantu barwaye indwara ya triple X bashobora kugira ibibazo by'iterambere cyangwa ibibazo by'ubuzima bwo mu mutwe. Ibi birimo:

• Gutinda mu mikurire : Urugero, ibintu nko kuvuga nabi no kugenda nabi.
• Ubumuga bwo kwiga.
• Indwara yo kudasobanukirwa neza/guhangayika cyane (ADHD ).
• Indwara zo mu mutwe nko guhangayika no kwiheba.
• Ubumuga bwo mu mutwe buciriritse.

Izindi ndwara

Nubwo bidakunze kubaho, bamwe mu bantu bafite indwara ya triple X bashobora kugira indwara nk'izi:

• Indwara z'ubudahangarwa bw'umubiri .
• Impinduka mu miterere y'umutima.
• Indwara zikunze kugaragara mu nzira y'inkari ( UTI ).
• Imyanya ndangagitsina - ubumuga bw'inkari cyangwa ubumuga.
• Ibitagenda neza mu mpyiko .
• Kusaza cyangwa kunanirwa kw'intanga ngore itaragera .
• Indwara zo mu mutwe .

Wibuke ko atari buri wese uzagira ibi bimenyetso byose. Hari abantu bashobora kugira kimwe cyangwa bibiri, abandi ntibagire na kimwe.

Ni iki gitera indwara ya triple X?

Indwara ya Triple X ni indwara iterwa no kuba hari chromosome ya gatatu ya X. Nubwo ari chromosome, akenshi ntabwo iragwa n'ababyeyi b'umuntu . Akenshi, ibaho ku bw'amahirwe. Ni ukuvuga ko chromosome ya X y'inyongera iterwa n'ikosa mu igabanywa rya chromosome mu gihe cy'iremwa ry'intanga ngabo za nyina cyangwa intanga ngabo za se. Iyi ni indwara ibaho rimwe na rimwe.

Ariko, bivugwa ko iyo umubyeyi arengeje imyaka 35 igihe umwana avuka, umwana ashobora kugira ibyago byinshi byo kurwara indwara ya triple X.

Ubimenya ute?

Mu by’ukuri, niba nta kibazo cy’uburwayi ufite cyangwa utinze mu mikurire yawe, birashoboka cyane ko iyi ndwara itazamenyekana. Ariko, niba muganga akeka ko wowe (cyangwa umwana wawe) ufite indwara ya trisomy X, azakugira inama yo gupima imiterere y’uturemangingo. Iki kizamini kandi cyitwa karyotype cyangwa microarray ya chromosome .

Hari abantu bamenya ko bafite indwara ya triple X iyo bipimishijwe kubera ibibazo byo kubyara.

Niba utwite, kandi ufite imyaka irenga 35, cyangwa niba nawe ufite indwara ya triple X syndrome, muganga wawe ashobora kukugira inama yo gupima imiterere y’umubiri w’umwana utwite, kuko umwana wawe ukiri mu nda aba afite ibyago byinshi byo kurwara iyi ndwara. Ibi bishobora kuba birimo gupima imiterere y’umwana utwite (NIPT ), amniocentesis , cyangwa gupima chorionic villi (CVS ). Ushobora kandi kumenya imiterere y’indwara ya triple X ku bw’amahirwe iyo urimo gukora ibindi bipimo kugira ngo umenye byinshi ku mwana wawe. Nubwo gupima imiterere y’umwana utwite byaba bigaragaza ko ari indwara ya triple X syndrome, ni ngombwa ko upima imiterere y’umubiri w’umwana wawe nyuma yo kuvuka kugira ngo wemeze ko arwaye .

Ivurwa ite?

Nta muti wihariye wa triple X syndrome. Ariko, gusuzuma no gufata ingamba hakiri kare bishobora gufasha cyane, cyane cyane ku bana bagira ibibazo byo gukura nabi.

Nyuma yo gusuzuma indwara, muganga wawe ashobora gutegeka ko hakorwa ibindi bipimo byinshi, urugero:

• Ultrasound y'impyiko kugira ngo harebwe imiterere y'impyiko zawe.
• Shaka abaganga b'indwara z'umutima cyangwa upime EKG cyangwa echocardiogram kugira ngo urebe uko umutima wawe umeze.
• Inama ku buvuzi bw'imitsi n'ibizamini by'imitsi .

Byongeye kandi, abaganga bawe bashobora kugufasha kwihanganira ibimenyetso byose bijyanye na syndrome ya triple X. Bashobora kukwohereza ku baganga b'inzobere nka:

• Inzobere mu bijyanye n'imikorere y'umubiri (endocrinology) (ibibazo bifitanye isano n'imisemburo).
• Ubuvuzi bw'umubiri (ku bintu nk'intege nke z'imitsi).
• Ubuvuzi bw'akazi (bufasha mu mirimo ya buri munsi).
• Ubuvuzi bw'imvugo (ku bibazo byo kuvuga).
• Imitekerereze y'abantu (ku bibazo by'ubuzima bwo mu mutwe).
• Inzobere mu bijyanye n'uburumbuke ikora ubujyanama ku bijyanye no kubyara no kuboneza urubyaro.
• Ubujyanama ku bijyanye n'imiterere y'umubiri niba ushaka kubyara umwana.

Niba ugize ikibazo cy’intanga ngore imburagihe, muganga wawe azakubwira ibyiza n’ibibi byo gufata imiti ya estrogen .

Ese indwara ya Triple X ishobora kwirindwa?

Dukurikije amakuru ariho ubu, nta buryo bwo kwirinda indwara ya triple X. Niba ufite ibyago byinshi byo kubyara umwana ufite indwara ya triple X (urugero, niba ufite imyaka irenga 35), ni byiza kuganira na muganga wawe ku birebana n'ubujyanama ku bijyanye n'imiterere y'umubiri ndetse no gupima imiterere y'umubiri w'umwana utwite.

Ni iki cyizere cy’ababana n’iyi ndwara?

Ku bantu benshi, indwara ya triple X ntabwo igira ingaruka zikomeye ku buzima bwabo. Muri rusange, gusuzuma indwara hakiri kare no kuyivura bishobora gufasha kugabanya ingaruka z'ubutinda bw'imikurire . Abana bagomba kwisuzumisha buri gihe kugira ngo bakurikirane imikurire yabo n'imikurire yabo. Kubera ko ibimenyetso bishobora gutandukana cyane bitewe n'umuntu ku wundi, ni ngombwa kugira isuzuma ryuzuye kugira ngo hamenyekane ibyo ukeneye byihariye.

Ubuzima bw'umuntu bumeze bute?

Indwara ya Triple X ntabwo igira ingaruka ku buzima bwayo. Ariko, zimwe mu ngaruka mbi zijyana nayo zishobora kugira ingaruka. Akenshi, abantu barwaye triple X babaho ubuzima busanzwe, nk'abantu bafite chromosomes ebyiri za X.

Ese ubu ni ubumuga?

Oya, indwara ya triple X si ubumuga ubwayo. Ariko, zimwe mu ndwara zijyana nayo (urugero: ingorane zikomeye mu myigire, ibibazo by'ubuzima bwo mu mutwe) zishobora kugabanya ubushobozi bwawe bwo kubona no kuguma ku kazi. Niba ari uko bimeze, mu bihugu bimwe na bimwe ushobora gusaba amafaranga nk'ay'ubwishingizi bw'izabukuru ku bafite ubumuga. Muri Sri Lanka, niba ufite ikibazo cyo kubona akazi, ushobora kandi gushaka uburyo bwo kubona inkunga iturutse kuri leta cyangwa izindi nzego.

Ni gute indwara ya triple X igira ingaruka ku bwonko?

Kubera ko indwara ya triple X ari indwara idakunze kugaragara, nta bushakashatsi bwinshi bwakozwe ku bwonko bw'abantu bayirwaye. Mu bushakashatsi buto bwakorewe ku bana 35 barwaye trisomie X, abashakashatsi basanze ubwonko bwabo bwari buto ugereranyije n'ubw'abana bafite imyaka isanzwe n'igitsina. Ibice by'ubwonko bigira uruhare mu ndimi no mu mikorere y'umubiri nibyo byagizweho ingaruka cyane. 40% by'aba bana nabo bari bafite ikibazo cy'ubuzima bwo mu mutwe cyitwa anxiety. Ariko, hakenewe ubushakashatsi bunini kugira ngo byemezwe ibi byavumbuwe.

Icyo tugomba kwigira kuri ibi (Ubutumwa bwo kujyana mu rugo)

Wenda umwana wawe nta gaciro afite, cyangwa afite ikibazo cyo kugira inshuti. Cyangwa se wenda umaze igihe kinini ugerageza kubyara ariko ntugire icyo ugeraho. Nubwo wahoraga wumva utandukanye gato n'abandi bose, kumenya ko ufite indwara ya genetiki bishobora kuba ikibazo gikomeye. Hari igihe kubona isuzuma bishobora kugufasha, nko kuvuga uti "Oh, ibi nibyo bimaze igihe kinini bibaho." Ibindi bihe, bishobora gutera ubwoba, cyangwa se bigasa nkaho byose byarangiye.

Ariko, gusuzuma indwara ni amakuru utari uzi mbere. Bifata igihe kugira ngo ubyimenyere kandi ubihuze. Mu gihe wibaza igihe n'uburyo bwo kubibwira umwana wawe, vugana na muganga w'umwana wawe. Bashobora kuguhuza n'amatsinda y'abaterankunga n'izindi nzego. Wibuke ko utari wenyine. Ikintu cy'ingenzi ni ukumenya ibi bibazo no kubona ubufasha ukeneye.

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