Ese umwana wawe afite ibi bimenyetso? Reka tuvuge kuri Down Syndrome

Ese wigeze ubona ko hari abana bamwe bitwara mu buryo butandukanye n’ubw’abandi, kandi uko bagaragara bigatandukana gato? Wenda nawe wigeze utekereza kimwe ku mwana wawe. Muri ibyo bihe, ikibazo kimwe kiza mu mutwe wacu ni iki: "Iki ni iki?" Uyu munsi tugiye kuvuga ku ndwara isaba kwitabwaho by’umwihariko, ari yo Down Syndrome. Ntugahangayike, tuzavuga kuri ibi mu buryo bworoshye, mu buryo ushobora kumva.

Down Syndrome ni iki? Mu magambo make...

Down Syndrome ni indwara iterwa na genetiki. Ni ukuvuga ko iterwa na chromosome y'inyongera mu mubiri w'umwana iyo akivuka. Noneho ushobora kuba wibaza ibyo chromosomes ari byo. Mu tunyangingo duto cyane mu mibiri yacu, hari ibintu bisa n'udupira duto tw'imigozi. Ibyo ni byo twita chromosomes. Ibi ni byo bigena ibintu byinshi ku isura yacu, uburebure, ibara, n'ubushobozi bwacu.

Ubusanzwe, twese dufite chromosomes 23 muri buri selile. Ni ukuvuga chromosomes 46 muri rusange. Ariko, umwana ufite Down syndrome aba afite kopi y'inyongera ya chromosome 21, bivuze indi imwe. Hanyuma umubare wose wa chromosomes mu turemangingo twe uba 47. Ni ukubera iyi chromosome y'inyongera ubwonko n'umubiri by'umwana bikura mu buryo butandukanye gato.

Ni nde ushobora kurwara Down Syndrome?

Down syndrome ishobora kwibasira umuntu uwo ari we wese. Ni indwara iterwa n’uturemangingo kandi ntiterwa n’ikintu cyose umubyeyi cyangwa se akora mbere cyangwa mu gihe atwite. Akenshi, bibaho ku buryo butunguranye, bivuze ko bibaho ubwabyo. Akenshi ihererekanywa kuva ku gisekuru kijya ku kindi iyo intanga n’intanga bihuye.

Ni ibihe bintu bishobora gutera indwara ya Down Syndrome?

Ibi biracyakorerwa ubushakashatsi. Icyakora, ubushakashatsi bwagaragaje ko ibyago byo kubyara umwana ufite Down syndrome bishobora kwiyongera gato uko umubyeyi agenda akura . Ababyeyi barengeje imyaka 35 bafite amahirwe menshi yo kubyara umwana ufite Down syndrome cyangwa izindi ndwara zikomoka ku ngirabuzimafatizo.

Ariko ibi ntibivuze ko ababyeyi bakiri bato batarwara iyi ndwara. Kubera ko igipimo cyo kubyara kiri hejuru ku babyeyi bari munsi y'imyaka 35, abana benshi bafite indwara ya Down syndrome mu by'ukuri bavuka ku babyeyi bari munsi y'imyaka 35. Kubwibyo, imyaka si yo yonyine itera ikibazo.

Indwara ya Down Syndrome ikunze kugaragara gute?

Ugereranije n'ibihugu nka Amerika, Down Syndrome ni indwara ikunze kugaragara mu maraso. Abana bagera ku 6.000 bavukana iyi ndwara buri mwaka. Ibyo bivuze ko umwana umwe muri 700 bavuka ashobora kugira iyi ndwara. Muri Sri Lanka hari abana bafite iyi ndwara, bityo rero ni ngombwa cyane kubimenya.

Ni ibihe bimenyetso by'umwana ufite Down Syndrome?

Indwara ya Down syndrome ishobora gutera ibimenyetso by’umubiri, ubwenge, n’imyitwarire. Ariko, si buri mwana wese ufite ibi bimenyetso byose, kandi imiterere y’ibimenyetso ishobora gutandukana bitewe n’umwana umwe.

Imiterere y'umubiri (impinduka mu miterere)

Ibi bimenyetso bikunze kugaragara umwana akivuka, kandi bishobora kugaragara cyane uko umwana agenda akura.

• Ikiraro cya Nahe ni gito cyane .
• Amaso asa n'aho ahengamye hejuru .
• Ijosi ni rigufi gato .
• Amatwi, amaboko n'ibirenge bito ugereranije n'ibisanzwe .
• Kugira intege nke z'imitsi (kubyimba kw'imitsi) igihe cyo kuvuka.
• Urutoki ruto rw'ikiganza rurembeye imbere (rwerekeza ku gikumwe) .
• Kuba hari umurongo umwe w’uburebure ku kiganza (palmar crease).
• Kuba uri munsi y'uburebure busanzwe .

Uko umwana wawe akura, ibimenyetso by'inyongera bishobora kugaragara bitewe n'uburyo umubiri we wakuze akiri mu nda. Urugero:

• Udukoko two mu matwi cyangwa kubura amatwi.
• Ibibazo byo kutabona cyangwa indwara z'amaso .
• Ibibazo by'amenyo .
• Kurwara indwara cyangwa indwara nyinshi.
• Kubura umwuka wo mu gihe cyo gusinzira, ni indwara ituma guhumeka bihagarara mu gihe cyo gusinzira.
• Indwara y'umutima yavukanye .

Muganga wawe azahora asuzuma indwara nk'izi.

Imiterere y'ubwenge n'iterambere

Umwana wawe urwaye Down syndrome ashobora kugira imbogamizi mu iterambere ry’ubwenge bitewe na chromosome yinyongera. Ibi bishobora gutera ubumuga bw’ubwenge cyangwa iterambere ry’umubiri . Umwana wawe ashobora kudashobora gukora ibintu agomba gukora mu myaka runaka, ni ukuvuga ko ashobora kudashobora kugera ku ntambwe z’iterambere nk’iz’abandi bana. Urugero:

• Kugenda no kugenda (ubuhanga busesuye kandi bwiza bwo gutwara imitsi).
• Kuvuga (ubuhanga mu guteza imbere ururimi).
• Kwiga (ubuhanga mu mitekerereze).
• Gukina (ubuhanga mu mibanire n'abandi no mu byiyumvo).

Kubera ibi, bishobora gufata umwana wawe igihe kirekire kugira ngo akore ibi bintu:

• Gutoza ubwiherero.
• Kuvuga amagambo ya mbere.
• Gutera intambwe ya mbere.
• Kurya wenyine.

Tekereza nawe, abana bamwe bagenda bafite umwaka umwe, abandi bafite umwaka umwe n'igice. Umwana urwaye Down syndrome ashobora kudatangira kugenda atarageza ku myaka ibiri. Ibi ni bimwe mu bigize imikurire ye.

Ibiranga imyitwarire

Umwana urwaye Down syndrome ashobora kugaragaza imiterere imwe n'imwe y'imyitwarire. Ibi bishobora guterwa n'uko adashobora kukubwira neza ibyo akeneye wowe cyangwa abamurera. Ushobora kubona iyi mico:

• Kudakomera no kwirakaza .
• Kugorwa no kwibanda ku bintu .
• Imyitwarire yo gukabya cyangwa iy'ubusa ni ingeso yo kuba umuntu ukunda ibintu bimwe cyangwa gusubiramo ibintu bimwe .

Ni iki gitera indwara ya Down Syndrome?

Nkuko twabivuze mbere, impamvu nyamukuru itera Down syndrome ni ukuba hari chromosome y'inyongera . By'umwihariko, iterwa n'impinduka mu buryo uturemangingo twigabanyamo kabiri kuri chromosome 21. Umuntu wese ufite Down syndrome afite chromosome 21 y'inyongera muri zimwe mu turemangingo twabo cyangwa zose.

Hariho ubwoko butatu bwa Down syndrome, buri bumwe bufite impamvu zitandukanye.

• Trisomie 21 `(Trisomie 21)`
• Kwimura
• Ubumozayike

Trisomie 21 ni iki?

Ubu ni bwo bwoko bukunze kugaragara bwa Down Syndrome. "Trisomie" bivuze kugira kopi y'inyongera ya chromosome. Muri Trisomie 21, buri selile iri mu nda ikura ifite kopi eshatu za chromosome 21. Ubusanzwe, hari ebyiri gusa. Ubwo bwoko bugizwe na 95% by'abantu bafite Down Syndrome.

Indwara ya Translocation Down ni iki?

Muri ubu bwoko, chromosome 21 yose cyangwa igice cyayo kiba gifatanye n'indi chromosome. Bitandukanye na trisomie 21, aho kugira kopi y'inyongera ya chromosome 21 ubwayo, iba ifatanye na chromosome ifite umubare utandukanye. Ubu bwoko bugaragara mu bantu bari munsi ya 4% bafite Down syndrome.

Indwara ya Mosaic Down ni iki?

Ubu ni bwo bwoko bwa Down Syndrome budasanzwe . Buboneka munsi ya 1% by'indwara zose. "Mosaicism" bivuze ko uturemangingo tumwe na tumwe dufite chromosomes 46 zisanzwe, mu gihe utundi dufite chromosomes 47 (harimo na chromosome 21 y'inyongera). Busa nka mosaic ikozwe mu mabuye y'amabara atandukanye. Niyo mpamvu bwitwa mosaic.

Ni gute indwara ya Down syndrome yasuzumwa mbere yuko umwana avuka?

Ibizamini bimwe na bimwe byakozwe mu gihe utwite bishobora gutera amakenga abaganga ku bijyanye na Down syndrome. Ibindi bizamini nabyo bishobora kwemeza iyo ndwara.

Ibizamini byo gupima mbere yo kubyara

Ibi bizamini bireba gusa niba umwana wawe afite ibyago byo kurwara Down syndrome. Ntabwo bishobora kwemeza .Ibi bishobora kuba birimo gupima amaraso cyangwa gupima umubyeyi hakoreshejwe ultrasound. Mu gihe cyo gupima, muganga areba ibimenyetso by'ikintu kimeze nk'amazi menshi inyuma y'ijosi ry'umwana. Hari igihe, nubwo ibi bizamini bya mbere byaba ari ibisanzwe, umwana ashobora kuba afite indwara ya Down syndrome.

Ibizamini byo gusuzuma indwara mu gihe cyo gutwita

Ibi bizamini bishobora kwemeza Down Syndrome. Ibi bikunze gukorwa iyo ibizamini byavuzwe haruguru byerekanye ko hari ibyago. Kubera ko ibi bizamini bishobora guteza akaga gato ku mubyeyi n'umwana uri mu nda, muganga abisaba gusa nyuma yo kubisuzuma neza. Ingero:

• Amniocentesis: Ikizamini gisaba gufata amazi make hafi y'uruhinja.
• Gufata ingero za chorionic villus (CVS): Uburyo bwo gufata agace gato k'ingobyi y'umwana no gusuzuma.
• Gupima amaraso yo mu nda y'umura (PUBS): Ni ikizamini gisaba gufata amaraso make mu nda y'umura.

Ibi bizamini bishobora kumenya neza impinduka muri chromosomes.

Ni gute indwara ya Down Syndrome ipimwa nyuma yo kuvuka k'umwana?

Nyuma yo kuvuka k'umwana, abaganga basuzuma umwana ibimenyetso byavuzwe haruguru. Kugira ngo bemeze ko arwaye, hari ikizamini cyihariye gifata amaraso y'umwana, cyitwa ikizamini cya karyotype . Ibi bikubiyemo gufata icyitegererezo cy'amaraso y'umwana no kuyareba hifashishijwe mikorosikopi kugira ngo barebe niba umwana afite chromosome ya 21 y'inyongera.

Wakora iki iyo umenye ko umwana wawe uri mu nda afite indwara ya Down Syndrome?

Kumenya ko umwana wawe afite Down syndrome bishobora kuba icyemezo kigoye cyane. Ariko ibuka ko utari wenyine. Muganga wawe azagufasha kubona ibikoresho, serivisi z'ubujyanama, n'amatsinda y'ubufasha ukeneye.

Mu bihe nk'ibi, birafasha cyane kubona inama, cyangwa kujya mu itsinda ry'abaterankunga aho abandi babyeyi b'abana bafite indwara ya Down syndrome bahurira. Aho, ushobora gusangira ubunararibonye bwabo, ukabona inama zifatika, kandi ukarushaho kugira imbaraga. Ni nk'aho iyo hari ikibazo mu mudugudu wacu, buri wese ahurira hamwe kugira ngo afashe.

Ni ubuhe buryo bwo kuvura indwara ya Down Syndrome?

Nta muti uhari wa Down Syndrome. Ariko, hari uburyo bwinshi bwo kuvura n'ubufasha bufasha umwana wawe gukura neza no kubaho ubuzima bwiza. Ubu buryo bwo kuvura bugamije gufasha umwana gukura neza ku mubiri no mu mutwe. Ingero zirimo:

• Ubuvuzi bw'umubiri cyangwa ubuvuzi bw'akazi .
• Ubuvuzi bw'imivugire.
• Ku ishuriKwitabira gahunda z'uburezi bwihariye.
• Kuvura izindi ndwara zishingiye ku buzima .
• Kwambara indorerwamo z'abafite ibibazo byo kutabona cyangwa gukoresha ibyuma by'ubutabazi bw'amatwi ku bafite ubumuga bwo kutumva.

Ni nde wagombye kuba mu itsinda ryita ku mwana wanjye?

Niba umwana wawe afite indwara ya Down syndrome, azakenera kubonana n'inzobere zitandukanye kugira ngo barebe neza ko afite ubuzima bwiza. Iri tsinda rishobora kuba rigizwe na:

• Abatanga serivisi z'ibanze : Kwita ku mikurire y'umwana wawe, imikurire ye, inkingo ze, n'ibibazo by'ubuzima muri rusange.
• Abaganga b'inzobere bakurikije ibyo umwana akeneye: Urugero, inzobere mu ndwara z'umutima, inzobere mu ndwara z'imitsi, inzobere mu by'uturemangingo, n'inzobere mu by'amaso.
• Abavuzi b'imivugire : Fasha umwana kuvugana n'abandi.
• Abavuzi b'umubiri : Komeza imitsi no kunoza ubuhanga bwo gukora imyitozo ngororamubiri.
• Abavuzi b'akazi: Guteza imbere ubumenyi bukenewe kugira ngo ukore imirimo ya buri munsi byoroshye.
• Abavuzi b'imyitwarire: Bafasha mu guhangana n'ibibazo by'amarangamutima bizanwa n'indwara ya Down syndrome.

Ni izihe ndwara zindi zishobora gutera Down Syndrome?

Abantu bafite Down syndrome bashobora kurwara izindi ndwara zibaho igihe cyo kuvuka cyangwa zikagenda zikura uko igihe kigenda gihita. Muganga ashobora kugufasha wowe n'umwana wawe guhangana n'izi ndwara. Indwara zikunze kugaragara cyane ni izi:

• Ibibazo by'umutima .
• Ibitagenda neza bya tiroyide .
• Ibibazo by'igogora : impatwe, gusubira inyuma mu gifu, n'indwara ya celiac.
• Ubwenge bwo mu mutwe : Imbogamizi zijyanye n'ubuhanga mu mibanire n'abandi, itumanaho, n'imyitwarire isubiramo.
• Indwara ya Alzheimer (uko ugenda usaza).

Ese abantu bafite Down syndrome bari mu kaga gakomeye ko kurwara indwara ya Alzheimer?

Yego, abantu bafite Down syndrome baba bafite ibyago byinshi byo kurwara indwara ya Alzheimer uko bagenda bakura. Ubushakashatsi bwagaragaje ko abantu bagera kuri 30% bafite Down syndrome bari mu kigero cy'imyaka 50 na hafi 50% by'abantu bari mu kigero cy'imyaka 60 bashobora kuyirwara.

Bivugwa ko chromosome 21 y’inyongera ari yo nyirabayazana w’iyi ngaruka mbi. Ibi biterwa nuko utunyangingo turi kuri chromosome 21 dukora poroteyine yitwa amyloid precursor protein, ari nayo ituma habaho impinduka zigaragara mu bwonko bw’abarwayi ba Alzheimer.

Ese indwara ya Down syndrome ishobora kwirindwa?

Down syndrome ni indwara iterwa n'uturemangingo, bityo ntishobora kwirindwa . Niba ushaka kumenya ibyago byo kubyara umwana ufite iyi ndwara, vugana na muganga wawe ku birebana n'ubujyanama mu by'uturemangingo.

Ni iki wakwitega niba ufite umwana urwaye Down Syndrome?

Iyo abana bafite indwara ya Down syndrome bafashijwe neza kandi bagakundwa, bashobora kubaho ubuzima bwiza kandi bushimishije . Ubuvuzi n'ubuvuzi bishobora kubafasha gutsinda intambwe z'iterambere, kwiga hamwe n'abandi bana bo mu kigero cyabo, kugira inshuti no kugira akazi keza.

Hariho amatsinda menshi n'ibikoresho byinshi byo gufasha ababyeyi, imiryango, n'abarera abana.

Ese hari umuti wa Down Syndrome?

Oya. Down syndrome ni indwara ibaho ubuzima bwose kandi nta muti uhari . Ariko ibimenyetso birashobora gukemurwa, kandi hari uburyo bwo kuvura izindi ndwara zishobora kubaho.

Icyizere cy'ubuzima bw'abantu bafite Down Syndrome ni ikihe?

Muri iki gihe, imyaka isanzwe y’ubuzima ku muntu urwaye Down syndrome ni imyaka 60 cyangwa irenga . Ashobora gukenera ubufasha n’ubwitonzi mu buzima bwe bwose.

Ni izihe ngamba zihari ku bantu bafite Down syndrome n'imiryango yabo?

Hari uburyo bwinshi bwo gufasha abantu bafite Down syndrome n'imiryango yabo. Imiryango myinshi yifatanya n'amatsinda yo gushyigikira Down syndrome kugira ngo basangire ubunararibonye bwabo kandi baganire ku buryo bwo gufasha abana babo kubaho ubuzima bwiza kandi bushimishije.

Abantu bafite Down Syndrome bashobora gukenera ubufasha mu buzima bwabo bwose. Uretse ubuvuzi, bashobora no gukenera ubufasha mu bintu nk'uburezi, akazi, no kubaho mu bwisanzure. Hari imiryango itandukanye itanga ubumenyi n'imbaraga kuri abo bantu n'imiryango yabo. Hari imiryango na gahunda nk'izo muri Sri Lanka, bityo ushobora kubireba.

Ni ibihe bibazo ngomba kubaza muganga wanjye?

• Niba mfite amakenga ku ndwara ya Down Syndrome, ni gute nakwitegura ivuka ry'umwana wanjye?
• Nafasha nte umwana wanjye?
• Ese ushobora gutanga inama ku bikoresho bishobora gufasha imiryango?
• Ni nde wagombye kuba mu itsinda ryita ku mwana wanjye?

Ese abantu bafite Down Syndrome bashobora kubyara abana?

Yego, abantu bafite Down Syndrome bashobora kubyara. Abagore bagera kuri 50% barashobora kubyara. Abagabo bashobora kuba bafite igabanuka ry'uburumbuke. Ku mubyeyi ufite Down Syndrome, ibyago byo kwanduza abana be ni hagati ya 35% na 50%.

Ni ibisanzwe kumva ubabaye cyane iyo umenye ko umwana wawe afite indwara ya Down syndrome. Mu gihe ugerageza guhangana n'iyi nkuru, ibuka ko utari wenyine kandi ko chromosome y'umwana wawe iri mu bigize umwirondoro we. Ushobora kubona ubufasha buturutse ku itsinda ry'abaganga b'umwana wawe, cyangwa mu miryango n'amatsinda y'abamwitaho kugira ngo umenye byinshi kuri iyi ndwara kandi ufashe umwana wawe gutera imbere.

Ibintu by'ingenzi tugomba kwibuka (Ubutumwa bwo kujyana mu rugo)

Down Syndrome si ikintu cyo gutinya, ni ngombwa kumenya amakuru ahagije kuri yo.

• Iyi ni indwara iterwa n'uturemangingo, si ikosa ry'umuntu uwo ari we wese.
• Buri mwana aratandukanye, kandi abana bafite indwara ya Down syndrome bakura mu buryo bwabo bwihariye.
• Iyo aba bana bamenyekanye hakiri kare kandi bagahabwa ubufasha n'ubuvuzi bukenewe, bashobora no kubaho ubuzima bwiza kandi bufite intego.
• Ntabwo uri wenyine! Hari abantu benshi n'amikoro menshi yo kugufasha no kugushyigikira. Hanga iki kibazo ufite imyumvire myiza n'urukundo .

Wibuke ko buri mwana ari impano y'agaciro. Iyo ahawe urukundo, kwitabwaho, n'amahirwe akeneye, ashobora gutsinda isi!

` Down syndrome, chromosomes, indwara z'uturemangingo, imikurire y'umwana, ibibazo byihariye, uburezi bw'ubuzima, Sri Lanka