He aha te Ahuwhenua o Down? Ngā Tōmhanga, Ngā Take, me te Maimoatanga

Ko te ahuwhenua o Down tētahi āhuatanga ira tupu e puta ana ina whānau mai te tangata me te kape atu o te karōmu 21. Ka whakarereke tēnei rauemi ira tupu atu te whanaketanga o te tinana me te roro o te pēpi, ā, ka āhei ai ngā rerekētanga tinana me ngā hinengaro.

E pā ana ki te 1 o ia 700 o ngā pēpi i te United States e whānau ana me te ahuwhenua o Down, ā, koinei te āhuatanga karōmu tino noa. Ka taea e ngā tāngata e whai ana i te ahuwhenua o Down te noho ora whai hua, motuhake me te tautoko me te tiaki tika.

He aha te Ahuwhenua o Down?

Ka puta te ahuwhenua o Down ina 47 ngā karōmu o ngā pūtau, kāore ko ngā 46 noa iho. Ka pā te karōmu 21 atu ki te tipu me te mahi o te tinana mai i te wā whānau.

I whakaahuatia tuatahitia tēnei āhuatanga e te Dr. John Langdon Down i te 1866, ā, koia te take i huaina ai ki tōna ingoa. I tēnei rā, e mōhio ana tātou he rerekētanga ira tupu tūturu tēnei e taea ana te puta ki tetahi whānau, ahakoa te iwi, te momo, te tūāhua whānau rānei.

He rite ngā āhuatanga tinana o ngā tāngata e whai ana i te ahuwhenua o Down, engari he motuhake ia tangata me tōna ake tuakiri, āheinga, me te kaha. He tokomaha e ora ana motuhake, e mahi ana, e whakawhanaunga ana, ā, e whai hua ana ki ō rātou hapori.

He aha ngā Momo o te Ahuwhenua o Down?

E toru ngā momo matua o te ahuwhenua o Down, ā, ko ia momo i puta mai i ngā rerekētanga ira tupu rerekē. Ko te momo tino noa e pā ana ki te 95% o ngā tāngata e whai ana i te āhuatanga.

Trisomy 21 ko te momo tino noa, kei ia pūtau o te tinana e toru ngā kape o te karōmu 21, kāore ko ē rua. Ka puta tēnei i te wā e hangaia ana ngā pūtau whakaū, ā, koinei te nuinga o ngā take.

Translocation Down syndrome ka puta ina piri tetahi wāhanga o te karōmu 21 ki tētahi atu karōmu. Ko tēnei momo e pā ana ki te 3-4% o ngā tāngata e whai ana i te ahuwhenua o Down, ā, ka taea pea te whakawhiwhi mai i te mātua.

Mosaic Down syndrome ko te momo tino onge, e pā ana ki te 1-2% o ngā tāngata. I roto i tēnei momo, kei ētahi pūtau te karōmu 21 atu, engari kāore i ētahi atu, ā, ka taea pea te hua i ngā tohumānga ngawari.

He aha ngā Tōmhanga o te Ahuwhenua o Down?

Ka pā te ahuwhenua o Down ki ngā tāngata i ngā huarahi rerekē, engari he āhuatanga tinana me ngā whanaketanga noa e taea ana e koe te kite. Kāore ia tangata e whai i ēnei āhuatanga katoa, ā, ka taea te rereke mai i te ngawari ki te kitea ake.

Ko ngā āhuatanga tinana e whakaatu pinei:

• Ngā kanohi āporo-āhua e piko ana ki runga
• Te mata papatahi me te ihu pōro
• Ngā taringa iti me te waha
• Te arero pūta
• Te kaki poto me te teitei poto
• Ngā ringa iti me tetahi kōwae kotahi i runga i te ringa
• Te ngākau ngawari (e kiia nei ko te hypotonia)
• Ngā hononga ngawari

Ko ēnei āhuatanga tinana he kore kino te nuinga, ā, he wāhanga noa iho o te āhua o te pānga o te ahuwhenua o Down. Engari, ko te ngākau ngawari ka pā ki te nekehanga me te whanaketanga i ngā tau tuatahi.

Ko ngā rerekētanga whanaketanga e whakaatu pinei:

• Te ngoikoretanga hinengaro mai i te ngawari ki te waenga
• Te whakaroa o te whanaketanga o te kōrero me te reo
• Te whakaroa o te whanaketanga o ngā pūkenga motuka (te noho, te haere, ngā pūkenga motuka pai)
• Ngā rerekētanga ako e pā ana ki te mahara me te tukatuka
• Ngā raruraru aro

Kia mahara ko ēnei wero kāore e whakatau i te kaha o te tangata. Me te tautoko tika, te rongoā, me te mātauranga, ka taea e ngā tāngata e whai ana i te ahuwhenua o Down te whakatutuki i ngā mea whakamiharo, ā, te ora whai hua.

He aha ngā Take o te Ahuwhenua o Down?

Ka puta te ahuwhenua o Down nā te he i te wā e wehewehea ana ngā pūtau, ā, ka hua ai te karōmu 21 atu. Ka puta tēnei i te mutunga o te wā, ā, he tūturu i te wā e hangaia ana ngā pūtau whakaū.

Ko te take tino noa e kiia ana ko te "nondisjunction," ko te tikanga kāore ngā karōmu e wehe tika i te wā e wehewehea ana ngā pūtau. Ina puta tēnei i te hua manu wahine, te purapura rānei, ka mutu te pēpi me te toru ngā kape o te karōmu 21, kāore ko ngā rua noa iho.

He tino mutunga ke tēnei rerekētanga ira tupu, kāore i puta mai i tetahi mea i mahitia e ngā mātua, kāore rānei i mahi. Kāore e pā ki te kai, te noho, ngā āhuatanga taiao rānei, tetahi mea rānei i puta i te wā hapu.

I roto i ngā take onge e pā ana ki te translocation Down syndrome, ka taea pea te kawe i tetahi mātua i te karōmu i whakarereketia e whakapiki ana i te tupono o te whānau i te tamaiti me te ahuwhenua o Down. Engari, ko te nuinga o ngā take ka puta mai i te koretake, kāore he hītori whānau.

He aha ngā Tohutohu Morearea mō te Ahuwhenua o Down?

Ko te tohutohu morearea matua mō te ahuwhenua o Down ko te tau o te whaea, ahakoa ngā pēpi e whai ana i tēnei āhuatanga e whānau ana ki ngā whaea o ngā tau katoa. Ko te mōhiotanga ki ēnei take ka taea te āwhina i a koe ki te whakatau i ngā whakatau mō te tiaki i mua i te whānau.

Ko ngā tohutohu morearea matua e whakaatu pinei:

• Te tau o te whaea neke atu i te 35 (ka piki haere te morearea me te tau)
• Te tamaiti o mua me te ahuwhenua o Down
• Ko te kaimau o te translocation ira tupu (onge)
• Te tau o te matua neke atu i te 40 (te piki iti o te morearea)

He mea nui te mōhiotanga kei ngā tohutohu morearea kāore e tikanga ka tino whai to pēpi i te ahuwhenua o Down. He tokomaha ngā pēpi e whai ana i te ahuwhenua o Down e whānau ana ki ngā whaea kōhungahunga, ā, ko te nuinga o ngā whaea pakeke e whai ana i ngā pēpi kāore he āhuatanga karōmu.

Ka piki te morearea me te tau o te whaea, nā te mea ko ngā hua manu wahine pakeke ka tino he i te wā e wehewehea ana ngā pūtau. I te tau 35, ko te morearea e pā ana ki te 1 i roto i te 350, i te tau 45, e pā ana ki te 1 i roto i te 30.

He aha ngā Wero pea i roto i te Ahuwhenua o Down?

Ka taea e ngā tāngata e whai ana i te ahuwhenua o Down te whai i ētahi wero hauora i o rātou oranga katoa, engari ka taea te whakahaere pai i te nuinga o ēnei me te tiaki hauora tika. Ko ngā tirotiro noa me te whakauru wawe ka whakarereke nui.

Ko ngā take hauora noa e whakaatu pinei:

• Ngā ngoikoretanga ngākau (kei te 40-50% o ngā pēpi)
• Ngā raruraru whakarongo me ngā mate taringa noa
• Ngā raruraru tirohanga tae atu ki ngā cataracts me ngā hapa whakarite
• Te apnea moe nā te rerekētanga o te ara hau
• Ngā raruraru thyroid
• Ngā raruraru pūnaha kai penei i te mate pūkeko rānei te mate celiac
• Te piki o te tūponotanga ki ngā mate

Ko ēnei āhuatanga e rangona ana he awangawanga, engari kia mahara ka taea te whakaora pai i te nuinga. Hei tauira, ko ngā ngoikoretanga ngākau ka taea te whakatika me te pokanga, ka taea ai e ngā tamariki te ora ora, hauora.

Ko ngā wero onge ake, engari nui ake te kino pea e whakaatu pinei:

• Te ngoikoretanga hinengaro nui
• Te mate leukemia (te piki iti o te morearea)
• Te mate Alzheimer (te piki o te morearea i ngā pakeke pakeke)
• Te koretake atlantoaxial (te koretake o te tuaiwi kaki)
• Ngā ngoikoretanga ngākau nui e hiahia ana ki ngā pokanga maha

Ko te tirotiro hauora noa ka āwhina ki te hopu i ēnei take i te wā wawe ina tino taea te whakaora. Ka hanga to rōpū hauora i tētahi mahere tiaki motuhake hei whakautu ki ngā hiahia motuhake o tō tamaiti.

Me pēhea te Whakatau i te Ahuwhenua o Down?

Ka taea te kite i te ahuwhenua o Down i mua i te whānau mā ngā whakamātautau matawai, mā ngā whakamātautau whakamārama rānei. I muri i te whānau, ka taea e ngā tākuta te kite i te āhuatanga i runga i ngā āhuatanga tinana me ngā tauira whanaketanga, ā, ka whakamana mā te whakamātautau ira tupu.

I te wā hapu, ka taea e ngā whakamātautau matawai te tohu i te piki o te morearea, engari kāore e taea te whakatau i te ahuwhenua o Down. Kei roto i ēnei ngā whakamātautau toto e ine ana i ētahi pūmua me ngā homoni, me ngā whakamātautau ultrasound e titiro ana ki ngā tohu tinana.

Ko ngā whakamātautau whakamārama e homai ana ngā whakautu tika mā te tirotiro tika i ngā karōmu. Ko te amniocentesis me te chorionic villus sampling (CVS) ka taea te whakamana i te ahuwhenua o Down i te wā hapu, ahakoa he iti te morearea o te ngaronga.

I muri i te whānau, ka whakaaro pea ngā tākuta ki te ahuwhenua o Down i runga i ngā āhuatanga tinana me ngā tauira whanaketanga. Ka taea e te whakamātautau toto ngāwari e kiia nei ko te karyotype te whakamana i te whakatau mā te whakaatu i te karōmu 21 atu.

He aha te Maimoatanga mō te Ahuwhenua o Down?

Ahakoa kāore he rongoā mō te ahuwhenua o Down, ko te whakauru wawe me ngā rongoā tautoko ka taea te āwhina i ngā tāngata ki te tae ki tō rātou kaha katoa. Ko te maimoatanga e aro ana ki te whakautu ki ngā hiahia hauora motuhake me te tautoko i te whanaketanga.

Ko ngā ratonga whakauru wawe e whakaatu pinei:

• Te rongoā tinana hei whakapai ake i te ngākau me ngā pūkenga motuka
• Te rongoā kōrero hei tautoko i te whanaketanga o te whakawhitiwhiti kōrero
• Te rongoā mahi mō ngā pūkenga ora o ia rā
• Ngā kaupapa mātauranga motuhake e rite ana ki ngā hiahia ako
• Te whakahaere hauora o ngā āhuatanga hauora e hono ana

Ko ēnei ratonga e mahi pai ana ina tīmata wawe, i te wā pēpi. He maha ngā hapori e whakarato ana i ngā kaupapa whakauru wawe whānui e hoahoa motuhake ana mō ngā tamariki e whai ana i te ahuwhenua o Down.

Ko te maimoatanga hauora e whakautu ana ki ngā take hauora motuhake i te wā e puta mai ana. Ka taea pea tēnei te pokanga ngākau mō ngā ngoikoretanga ngākau, ngā taputapu whakarongo mō te ngaro o te whakarongo, te rongoā thyroid rānei mō ngā raruraru thyroid.

I te ora katoa, ka whai hua ngā tāngata e whai ana i te ahuwhenua o Down i te tautoko tonu i te mātauranga, te mahi, me ngā pūkenga noho motuhake. He tokomaha ngā pakeke e whai ana i te ahuwhenua o Down e mahi ana, e noho ana motuhake, e whakawhanaunga ana, ā, e pupuri ana i ngā hononga whai hua.

Me pēhea te Tikanga Whare i te Wā Ahuwhenua o Down?

Ko te tiaki i te tamaiti e whai ana i te ahuwhenua o Down i te kāinga e whakauru ana i te hanga i tētahi taiao tautoko, whakaohooho e whakaohooho ana i te whanaketanga me te whakatau i ō rātou hiahia motuhake. Ko tō aroha me tō pumau te mea nui rawa.

Aro atu ki te whakatū i ngā mahi e āwhina ana i tō tamaiti ki te noho haumaru me te whakapono. Ko ngā tamariki e whai ana i te ahuwhenua o Down e tino ora ana me ngā kaupapa whakataurite me ngā tumanakohanga mārama.

Whakaohooho i te motuhake mā te wehewehe i ngā mahi ki ngā kaupae iti, ngāwari. Kia koa ki ngā wikitoria iti, ā, kia manawanui ki te tukanga ako, i te mea ka taea pea te whanaketanga atu i te tere, engari he ahunga whakamua tonu.

Noho hono atu ki tō rōpū hauora me ngā kaiwhakarato rongoā. Ko te whakawhitiwhiti kōrero noa e āwhina ana ki te whakarite kei te whiwhi to tamaiti i te tiaki pumau i ngā āhuatanga katoa.

Kaua e wareware ki te tiaki i a koe me tō whānau. Ko te tiaki i te tamaiti e whai ana i ngā hiahia motuhake ka taea te whakahau, ā, ko te rapu tautoko mai i ētahi atu whānau, ngā rōpū tautoko, ngā ratonga tiaki wātea rānei he mea noa, ā, he whai hua.

Nōhea te Kite i te Tākuta mō te Ahuwhenua o Down?

Mēnā kei te whakaaro koe pea kei tō tamaiti te ahuwhenua o Down, he mea nui te kōrero ki ō kōrero ki tō tākuta tamariki i te wā wawe. Ko te whakatau wawe ka āhei ai ngā hua pai ake mā ngā ratonga whakauru tere.

Rapua te tiaki hauora tere mēnā kei tō tamaiti e whai ana i te ahuwhenua o Down ngā tohu o ngā wero nui penei i te uaua o te manawa, te ngenge nui, ngā huringa āhua rānei e tohu ana pea i ngā raruraru ngākau.

Ko ngā tirotiro noa he mea nui mō te tirotiro i te tipu, te whanaketanga, me te matawai mō ngā āhuatanga hauora e hono ana. Ka tūtohu tō tākuta i tētahi kaupapa motuhake i runga i ngā hiahia o tō tamaiti.

Whakapa atu ki tō kaiwhakarato hauora mēnā ka kite koe i ngā tohumānga hou, te whakatairanga whanaketanga, te uaua atu rānei o tō tamaiti i te noa ki ngā mahi o ia rā.

Me pēhea te Whakarite mō tō Hui Tākuta?

Ko te whakarite mō ngā hui hauora e āwhina ana ki te whakarite kei te whiwhi koe i te nuinga mai i tō wā me ngā kaiwhakarato hauora. Kawe mai tētahi rārangi o ngā rongoā o nāianei, ngā tohumānga hou, me ētahi pātai e hiahia ana koe ki te kōrero.

Pupuri i te rekoata o ngā tohu whanaketanga o tō tamaiti, ahakoa ka oti i muri i te noa. Ko tēnei mōhiohio e āwhina ana i ngā tākuta ki te aroturuki i te ahunga whakamua me te whakarereke i ngā mahere maimoatanga.

Kaua e whakaroa ki te ui pātai mō tetahi mea kāore koe e mōhio. Tonohia ngā mōhiohio tuhituhi, ngā rauemi rānei e taea te āwhina i a koe ki te tautoko pai ake i tō tamaiti i te kāinga.

Whakaarohia te kawe mai i tētahi mema whānau, hoa rānei mō te tautoko, ina koa i ngā hui nui, i te wā e kōrero ana rānei mō ngā kōwhiringa maimoatanga.

Me pēhea te Ārai i te Ahuwhenua o Down?

Kāore e taea te ārai i te ahuwhenua o Down, nā te mea ka puta mai i tetahi kaupapa ira tupu i te wā e hangaia ana ngā pūtau. Engari, ko te mōhiotanga ki ngā tohutohu morearea ka taea te āwhina i a koe ki te whakatau i ngā whakatau mō te whakarite whānau me te tiaki i mua i te whānau.

Ko te tohutohu ira tupu i mua i te hapu ka taea te āwhina i a koe ki te mōhio ki ō tohutohu morearea whaiaro me te kōrero mō ngā kōwhiringa matawai e wātea ana. He mea nui tēnei, ina koa mēnā he hītori whānau tōu mō ngā āhuatanga karōmu.

Mēnā kei te whakaaro koe ki te hapu, ko te pupuri i te hauora pai mā te kai tika, ngā huaora i mua i te hapu, me te tiaki hauora noa e tautoko ana i te hua hapu pai rawa.

Kia mahara ko te nuinga o ngā pēpi e whai ana i te ahuwhenua o Down e whānau ana ki ngā mātua kāore he tohutohu morearea e mohiotia ana, ā, ko te whai i ngā tohutohu morearea kāore e whakamana ka whai tō pēpi i te āhuatanga.

He aha te Tango Matua mō te Ahuwhenua o Down?

Ko te ahuwhenua o Down tētahi āhuatanga ira tupu e pā ana ki te whanaketanga me te ako, engari kāore e ārai i ngā tāngata ki te ora ora whai hua. Me te tautoko tika, te tiaki hauora, me ngā wāhi mātauranga, ka taea e ngā tāngata e whai ana i te ahuwhenua o Down te whakatutuki i ngā mea whakamiharo.

Ko te whakauru wawe me te tautoko tonu te mea nui rawa i ngā hua. Ko te tīmatanga wawe o ngā ratonga, ko te pai ake te tupono o tō tamaiti ki te whanaketanga o tōna kaha katoa.

He motuhake ia tangata e whai ana i te ahuwhenua o Down, me ōna ake kaha, wero, me te tuakiri. Aro atu ki te ahunga whakamua motuhake o tō tamaiti, kāore ki te whakarite ki ētahi atu.

Kia mahara kāore koe i te kotahi i roto i tēnei haerenga. He maha ngā rauemi, ngā rōpū tautoko, me ngā tohunga e rite ana ki te āwhina i a koe me tō whānau ki te ora tahi.

Ngā Pātai Nōkua e Pā ana ki te Ahuwhenua o Down

P1: He aha te roa o te ora mō ngā tāngata e whai ana i te ahuwhenua o Down?

Kua tino pai ake te roa o te ora mō ngā tāngata e whai ana i te ahuwhenua o Down i ngā tekau tau kua pahure. I tēnei rā, he tokomaha ngā tāngata e whai ana i te ahuwhenua o Down e ora ana ki ō rātou tau 60 me neke atu, ā, kei ētahi e tae ana ki ō rātou tau 70, 80 rānei. Ko te whakapainga i puta mai i te tiaki hauora pai ake, te whakauru wawe, me te maimoatanga o ngā āhuatanga hauora e hono ana penei i ngā ngoikoretanga ngākau. Ko te roa o te ora takitahi e whakawhirinaki ana ki te hauora whānui, te whai i ngā wero, me te uru atu ki te tiaki hauora kounga i te ora katoa.

P2: Ka taea e ngā tāngata e whai ana i te ahuwhenua o Down te whānau tamariki?

Ae, ka taea e ētahi tāngata e whai ana i te ahuwhenua o Down te whānau tamariki, ahakoa he iti ake ngā reiti whakaū i te taupori whānui. Ka taea e ngā wāhine e whai ana i te ahuwhenua o Down te hapu me te whānau tamariki, ahakoa ka whai pea rātou i ngā morearea nui ake i te wā hapu, ā, kei ō rātou tamariki te 50% o te tupono o te whai i te ahuwhenua o Down. Ko ngā tāne e whai ana i te ahuwhenua o Down he kore hua te nuinga nā te iti o te whakaputa purapura. Me mahi tahi te tangata e whai ana i te ahuwhenua o Down e whakaaro ana ki te matua me ngā kaiwhakarato hauora ki te mōhio ki ngā morearea me te whiwhi i te tautoko tika.

P3: He aha te taumata o te motuhake ka taea e ngā tāngata e whai ana i te ahuwhenua o Down te whakatutuki?

Ko te taumata o te motuhake e rerekē ana i waenga i ngā tāngata e whai ana i te ahuwhenua o Down, engari ka taea e te tokomaha te whakatutuki i te motuhake nui me te tautoko tika. Kei ētahi e noho ana motuhake, e mahi ana, e whakahaere ana i ō rātou putea, ā, e pupuri ana i ngā hono. Kei ētahi pea e hiahia ana ki te tautoko atu ki ngā mahi o ia rā, engari ka taea tonu te whai wāhi whai hua ki ō rātou hapori. Ko ngā take matua ko te whakauru wawe, te mātauranga kounga, te tautoko whānau, me ngā āheinga takitahi. Ko te nuinga o ngā tāngata e whai ana i te ahuwhenua o Down ka taea te ako i ngā pūkenga tiaki whaiaro, te mahi i te mahi tautoko, me te koa ki ngā mahi whakangahau.

P4: He rongoā rānei he tāpiri e āwhina ana ki te ahuwhenua o Down?

I tēnei wā, kāore he rongoā e whakaora ana i te ahuwhenua o Down, engari ka taea e ngā maimoatanga maha te whakautu ki ngā āhuatanga hauora e hono ana. Hei tauira, ko te rongoā thyroid e whakaora ana i te hypothyroidism, ā, ko ngā rongoā ngākau e whakahaere ana i ngā take ngākau. Kei ētahi rangahau e tirotiro ana i ngā maimoatanga pea mō ngā tohumānga hinengaro, engari kāore he rongoā kua whakamanahia. Kia tupato ki ngā tāpiri, ngā maimoatanga rānei kāore i whakamanahia e hokona ana mō te ahuwhenua o Down. Me kōrero tonu ki tō kaiwhakarato hauora i mua i te tīmatanga o ētahi rongoā hou, tāpiri rānei.

P5: Me pēhea taku tautoko i tētahi mema whānau, hoa rānei e whai ana i te ahuwhenua o Down?

Ko te huarahi pai ki te tautoko i tetahi e whai ana i te ahuwhenua o Down ko te whakahaere i a rātou me te aro ki ō rātou āheinga, kāore ki ngā whakawhitinga. Whakauruhia rātou ki ngā mahi whānau me ngā hui hapori, whakawhitiwhiti tika me rātou, kāore mā ngā kaiwhakarato tiaki, ā, kia manawanui ki ngā rerekētanga whakawhitiwhiti kōrero. Tautokohia ngā āwhina mahi ina hiahiatia, engari kaua e whakaaro kei te hiahia rātou ki te āwhina ki te katoa. Akohia te ahuwhenua o Down hei mōhio pai ake ki ō rātou wheako, ā, kia koa ki ō rātou whakatutukitanga pēnei i tō mahi mō tetahi atu. Ko te mea nui rawa, tirohia te tangata tuatahi, kāore ko te āhuatanga.