Iyo muganga akubwiye ko umwana wawe afite Down Syndrome, ushobora kumva ufite ubwoba bwinshi no gutungurwa. Ibyo ni ibisanzwe cyane. Ibibazo nka "Nkore iki ubu?" na "Ejo hazaza h'umwana wanjye hazaba hameze gute?" birashoboka ko biri mu bitekerezo byawe. Wihangayika. Tuzaganira kuri byose mu buryo bworoshye cyane ushobora gusobanukirwa. Nurangiza gusoma iyi nkuru, uzaba umaze gusobanukirwa neza iyi ndwara.
Mu magambo make, Down syndrome ni iki?
Kugira ngo tubisobanukirwe neza, reka dutangire ku kintu cy'ibanze mu mubiri wacu. Umubiri wacu ugizwe n'uturemangingo duto tubarirwa muri za miriyoni. Muri buri turemangingo harimo "amabwiriza" arimo amakuru yose yerekeye uko umubiri wacu ugomba gukora, uko tugaragara, uburebure bwacu, n'ibara ry'amaso yacu. Mu buvuzi, ibi bitabo by'amabwiriza twita chromosomes .
Ubusanzwe, buri karemangingo mu muntu muzima gafite ibice 23 by'izi chromosomes, byose hamwe bikaba 46. Ikiba ku mwana urwaye Down syndrome ni uko haba hari kopi y'inyongera ya chromosome 21. Ibi bivuze ko uturemangingo tw'umwana tuba dufite chromosomes 47 aho kuba 46.
Nk’uko amabwiriza amwe yo guteka yanditse kabiri ashobora guhindura uburyohe bw’ifunguro, ni nako iyi chromosome y’inyongera ishobora guhindura uburyo ubwonko bw’umwana n’umubiri we bikura. Down syndrome ni indwara iterwa n’uturemangingo.
Ese hari impamvu yihariye itera iyi ndwara? Ni nde uri mu kaga gakomeye?
Iki ni ikibazo ababyeyi benshi bibaza. "Ese iri ni ikosa ryacu?" Baribaza bati "Oya rwose. Down syndrome si indwara iterwa n'ibyo ababyeyi bakoze mbere cyangwa mu gihe cyo gutwita. Ibaho hafi rimwe na rimwe. Ni ukuvuga ko bibaho ku bw'amahirwe mu gihe cy'igabanyuka ry'uturemangingo bibaho iyo intanga n'igi bihuye mu gihe cyo gusama.
Ariko, ubushakashatsi bwagaragaje ko ibyago byo kubyara umwana ufite Down syndrome byiyongera gato uko imyaka y'umubyeyi yiyongera . Ibi byago ni byinshi cyane cyane ku bagore barengeje imyaka 35. Ariko, ibi ntibivuze ko iyi ndwara itabaho ku babyeyi bari munsi y'imyaka 35. Mu by'ukuri, kubera ko abagore bari munsi y'imyaka 35 babyara abana benshi, abana benshi bafite Down syndrome bavuka ku babyeyi bari munsi y'imyaka 35.
Ni ibihe bimenyetso bisanzwe by'umwana urwaye Down syndrome?
Abana bafite indwara ya Down syndrome bafite imiterere imwe n'imwe isanzwe y'umubiri, ubwenge n'imyitwarire. Ariko, si ko iyo mico yose igaragara kuri buri mwana.Tugomba kandi kwibuka ko imiterere y'iyo mico ishobora gutandukana bitewe n'umwana.
| Ubwoko bw'imiterere | Ibisobanuro |
|---|---|
| Imiterere y'umubiri (isura) |
|
| Imiterere y'ubwenge n'iterambere | Bishobora gufata igihe kirekire kurusha umwana usanzwe kugira ngo agere ku ntambwe zimwe na zimwe z'iterambere.
|
| Ibiranga imyitwarire | Kubera ko abana bamwe badashobora kugaragaza ibyo bakeneye neza, bashobora kugaragaza imyitwarire nk'iyi:
|
Uretse ibi bimenyetso, hari n'izindi ngorane z'ubuzima zishobora kuvuka uko umwana akura. Urugero, indwara zo mu matwi, ibibazo byo kutabona, ibibazo by'amenyo, indwara yo kubura umwuka wo gusinzira, ndetse n'abana bamwe bashobora kuba bafite indwara z'umutima bavukanye . Kubwibyo, muganga azahora asuzuma abo bana.
Hariho ubwoko butatu bw'ingenzi bwa Down syndrome.
Down syndrome igabanyijemo ubwoko butatu bw'ingenzi, bitewe n'uburyo iyo chromosome ya 21 y'inyongera iherereye mu turemangingo.
1. Trisomie 21: Ubu bwoko ni bwo bukunze kugaragara cyane . Bufata 95% by'abantu bafite Down syndrome. Ubu bwoko burangwa no kuba hari kopi eshatu za chromosome 21 muri buri selile y'umubiri, aho kuba ebyiri.
2. Translocation Down Syndrome: Ibi ni gake cyane. Hafi 4% by'abarwayi ba Down syndrome bari muri ubwo bwoko. Ikibaho hano ni uko chromosome yose cyangwa igice cyayo 21 yimukira mu yindi chromosome ikayifata.
3. Mosaic Down Syndrome: Iyi ni yo ndwara idakunze kugaragara cyane (munsi ya 1%). Ikigaragara hano ni uko chromosome ya 21 y'inyongera iba mu tunyangingo tumwe na tumwe tw'umubiri gusa. Izindi selile ubusanzwe zigira chromosome 46. Kubera iyo mpamvu, ibimenyetso by'aba bana bishobora kuba bikeya gato ugereranyije n'ibisanzwe.
Ni gute wamenya iyi ndwara?
Down syndrome ishobora gupimwa mbere cyangwa nyuma yo kuvuka.
Mbere y'uko umwana avuka (mu gihe cyo gutwita)
Hari ubwoko bubiri bw'ibizamini bikorerwa mu gihe cyo gutwita.
- Ibizamini byo gusuzuma: Ibi bikoreshwa mu kumenya ibyago byo kurwara Down syndrome. Ibi bikorwa binyuze mu gupima amaraso ya nyina no gupima ultrasound. Gupima ibintu nk'ingano y'amazi ari inyuma y'ijosi ry'umwana. Niba iki kizamini cyerekanye ko hari ibyago, uzoherezwa gukorerwa isuzuma rirambuye kugira ngo byemezwe.
- Ibizamini byo gusuzuma indwara: Ibi ni ukuri 100% mu kumenya niba umwana afite Down syndrome. Ibizamini by'ingenzi kuri ibi ni Amniocentesis na Chorionic Villus Sampling (CVS) . Ibi bikubiyemo gufata urugero ruto rw'amazi ya amniotic cyangwa placenta ikikije umwana no gupima chromosomes.
Nyuma y'uko umwana avutse
Umwana akivuka, abaganga bazasuzuma uko umwana asa. Bazareba ibintu bisanzwe twavuze mbere. Iyo hakekwa ko Down syndrome ihari, hakorwa ikizamini cy'amaraso cyitwa karyotype kugira ngo byemezwe. Amaraso mato yafashwe ku mwana ashobora gusuzumwa hifashishijwe mikorosikopi kugira ngo hamenyekane neza niba hari kopi y'inyongera ya chromosome 21.
Ubuvuzi n'ubufasha - ni gute wafasha umwana?
Indwara ya Down si indwara ikira burundu. Ni indwara ibaho ubuzima bwose. Ariko, iyo umwana avuwe neza, agahabwa ubuvuzi bukwiye, kandi agafashwa mu buryo bwuje urukundo, ashobora gufashwa kubaho ubuzima bwiza kandi bushimishije mu buryo bwuzuye bushoboka.
Igikuru ni ugufata ingamba hakiri kare . Ni ukuvuga gutangira serivisi z'ubuvuzi zikenewe kugira ngo umwana akure neza hakiri kare.
Uburyo bwo kuvura burimo:
- Ubuvuzi bw'umubiri: Bufasha gukomeza imitsi no kunoza ubuhanga bwo kugenda nko kugenda no koga.
- Ubuvuzi bw'akazi: Buteza imbere ubumenyi bukenewe kugira ngo umuntu akore imirimo ya buri munsi mu buryo bworoshye, nko kwambara imyenda, kurya no gufata ikaramu.
- Ubuvuzi bwo kuvuga: Bugufasha kuvuga neza, kumva icyo abandi bavuga, no kugaragaza icyo wibwira.
- Gahunda z'uburezi bwihariye: Ibikorwa byo kwigisha bikorwa ku ishuri mu buryo bujyanye n'ubushobozi bw'umwana bwo kwiga.
- Ubuvuzi bw'izindi ngorane z'ubuzima: Niba hari indwara nk'indwara z'umutima cyangwa ibibazo bya tiroyide, tanga ubuvuzi bukenewe.
Ingingo zihariye zigomba kwitabwaho ku bijyanye n'ubuzima bw'umwana
Abana bafite Down syndrome bafite ibyago byinshi byo kugira ibibazo bimwe na bimwe by'ubuzima, bityo ni ngombwa kubimenya.
- Indwara z'umutima: Abana benshi bashobora kurwara indwara z'umutima bavukanye. Bamwe muri bo bakeneye kubagwa.
- Ibibazo bya tiroyide: Urugero rw'imisemburo ya tiroyide rushobora kuba ruri hasi cyangwa hejuru.
- Ibibazo by'igogora: Indwara nko kutagira impatwe na gastritis ni ibisanzwe.
- Indwara ya Alzheimer: Abantu bafite Down syndrome bafite ibyago byinshi byo kurwara indwara ya Alzheimer, indwara itera gutakaza kwibuka, uko bagenda bakura. Byagaragaye ko gene iri kuri chromosome 21 igira uruhare muri ibi.
Bityo rero, ni ngombwa gushaka inama za muganga buri gihe ku bijyanye n'imikurire n'ubuzima bw'umwana.
Inkunga uhabwa nk'ababyeyi
Ntugahangane n'amarangamutima wumva uri wenyine iyo umenye ko umwana wawe afite indwara ya Down syndrome. Ntabwo uri wenyine.
- Abaganga n'abavuzi: Bagana itsinda ry'ubuzima bw'umwana wawe. Baza ibibazo.
- Ubujyanama: Ushobora gushaka inama kugira ngo uganire ku bwoba bwawe n'impungenge ufite.
- Amatsinda yo gushyigikira: Jyana n'abandi babyeyi bafite abana bafite indwara ya Down syndrome. Ushobora kwigira byinshi ku byo banyuzemo. Ni inkunga ikomeye kandi kumenya ko atari wowe wenyine unyuze muri uru rugendo.
Kwita ku mwana urwaye Down syndrome bishobora kuba ingorabahizi. Ariko kandi ni ibintu bihindura ubuzima kandi byuje urukundo. Aba bana bakunda cyane kandi bifuza kugira ibyishimo. Iyo bafashijwe neza, nabo bashobora kujya ku ishuri, kugira inshuti, kubona akazi no kubaho ubuzima bwiza.
Ubutumwa bwo kujyana mu rugo
- Down syndrome ni indwara iterwa na chromosome ya 21 y'inyongera. Si indwara.
- Ibi ntibiterwa n'ikosa ry'ababyeyi. Ni ikintu gitunguranye.
- Nubwo nta muti wuzuye uhari, uburyo bwo kuvura nk'imitsi, imyitozo ngororamubiri, n'imivugire bushobora gufasha umwana guteza imbere ubushobozi bwe mu buryo bwuzuye.
- Ni ingenzi cyane gutanga serivisi zo gukurikirana neza abaganga no kuvura kuva bakiri bato.
- Abana n'abantu bafite Down syndrome bashobora kubaho ubuzima bwiza kandi bufite intego iyo bahawe urukundo, inkunga n'amahirwe akwiye.
- Ntabwo uri wenyine. Hari abaganga benshi, abavuzi, n'amatsinda y'ubufasha aboneka kugira ngo agufashe wowe n'umwana wawe. Vugana na muganga wawe ku mugaragaro kuri ibi.











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