Kei te āhua pakeke ake koe i tō tau? Ahakoa he mea noa te pēnei i ētahi wā, ko te koroheketanga wawe, te tere rānei o te koroheketanga o te tinana, ka puta pea i tētahi mate ira onge. Ko tētahi o aua mate ko te Werner Syndrome. Me kōrero taipitopito atu tātou mō tēnei i tēnei rā, he mea nui rawa hoki kia mōhio ki tēnei.
He aha te Mate Werner?
He whakarāpopototanga noa iho, ko te Werner Syndrome he mate ira onge e tere ake ai te koroheketanga o tō tinana i te mea e whakaarohia ana. E kiia ana e ētahi ko te 'adult progeria'. Kāore e puta ngā tohu tae noa ki te pakeketanga. Ko te tikanga ka tīmata koe ki te kite i te rerekētanga ina mutu tō tipu tere pērā i ō hoa. Kātahi, i ō tau 20, ka tīmata koe ki te pāngia e ngā tohu o te koroheketanga - me te roanga o te wā, ngā mate e pā mai ana me te koroheketanga.
Engari ehara i te mea ko te makawe hina me te kiri e heke ana anake te take. Ehara i te mea ko te huringa āhua anake te take o te koroheketanga. He maha ngā tāngata e pāngia ana e te Werner Syndrome ka pāngia e ngā raruraru morearea i roto i ō rātou tau 40 me te 50.
He aha ēnei tohu?
Ina pāngia koe e te Werner Syndrome, ka kitea nuitia ngā tohu i a koe e pakeke haere ana. Tērā pea ka tīmata koe ki te kite i ngā tohu o te koroheketanga i mua atu i ētahi atu o tō tau, i roto i ō tau 20. Anei ētahi o aua tohu:
Ngā panonitanga o te āhua
- Te hina o te makawe me te ngaro o te makawe: Ehara i te mea ko te makawe o te mahunga anake te mea kei roto, engari ko ngā tukemata me ngā kamo kanohi hoki.
- Te piki haere o te reo, te pāorooro rānei.
- Te hekenga o te kiko ngako o raro i te kiri: Ka puta te ahua o te kiri he piko.
- Te memeha o te uaua.
- Te pirau o ngā niho i te wā o mua.
- Te pōuriuri o ētahi wāhi o te kiri (te pikinga o te tae) te mārama rānei o ētahi wāhi (te kore pikinga o te tae).
- Te whero o te kiri nā te whānui o ngā oko toto.
- Te matotoru, te whakapakeke rānei o te kiri: He rite tonu tēnei ki tētahi āhuatanga e kiia nei ko te scleroderma.
- He āhua kanohi pōuri, mamae.
Ētahi atu raruraru hauora e puta mai ana i roto i te tinana
I te Werner Syndrome, ehara i te mea ko te āhua kaumātua anake tō āhua. Ka tere ake te koroheketanga o tō tinana i tō tau tūturu. Ko te tikanga, tera pea ka pāngia koe e ētahi atu raruraru hauora i mua atu i te wā e whakaarohia ana. Ko ētahi o ēnei ko:
- Mate huka momo 2: Inaa, tata ki te 7 i roto i te 10 o ngā tāngata whai Werner Syndrome ka pāngia e te mate huka momo 2 i te 35 o ō rātou tau.
- Te ngoikore o te kōpū (te kore e taea te mahi i roto i ngā ovaries me ngā testicles).
- Ngā mate kiri.
- Te osteoporosis (te angiangi o ngā wheua).
- Te toto toto tiketike (Atherosclerosis).
- Te katarata, te pirau kanohi rānei.
- Mamae o te uma (angina).
- Te mate pāwera o te ngākau.
- Te ngoikore o te ngākau `(te ngoikore o te ngākau)`.
Te mōrearea o te mate pukupuku
He nui ake te tūponotanga o te hunga whai Werner Syndrome ki te pāngia e ētahi momo mate pukupuku. Hei tauira:
- Te mate pukupuku o te tairoi.
- Melanoma (matepukupuku kiri).
- Osteosarcoma (matepukupuku wheua).
- Te sarcoma kiko ngohengohe.
He aha te take o te Werner Syndrome?
He mate ira tēnei. Arā, nā ngā whakarerekētanga ira i roto i ō tātou ira i puta ai. Ka puta te Mate Werner i roto i te hunga he rua ngā hapa o te ira WRN. I te nuinga o te wā, ka riro tētahi o ēnei ira hapa e rua i te whaea, ā, ko tētahi i te pāpā.
Me pēhea te kimi i tēnei? (Tauātanga)
Ka rapua e tō tākuta ētahi paearu hei tautuhi i te mate Werner Syndrome. Tērā pea ka tonoa e rātou ēnei whakamātautau:
- Ngā whakamātautau ira: Tirohia mēnā he panoni kei roto i te ira e hua ai te Werner Syndrome.
- Ngā hihi-X: Tirohia mēnā he huringa wheua, he pukupuku rānei.
I ētahi wā ka taea e ngā tākuta te tātaritanga i te Mate Werner i te 15 tau te pakeke. Heoi, he maha ngā wā ka kitea te tātaritanga i te 30, 40 rānei tau te pakeke. Nā te mea ka roa te puta o ētahi o ngā tohu motuhake o te mate.
He aha ngā maimoatanga?
Ka rongoatia te Werner Syndrome i runga i ngā tohu e puta mai ana. Ko te tikanga, kāore e pai te maimoatanga kotahi mō te katoa. Tērā pea ka mahi tahi ētahi tohunga ki te whakarite i tāu mahere maimoatanga. Hei tauira:
- Ngā endocrinologists (ngā tohunga homoni).
- Ngā tohunga kanohi ( ngā tohunga kanohi).
- Ngā tohunga wheua me ngā hononga (ngā tohunga wheua me ngā hononga).
Ko ngā maimoatanga ka whiwhi koe ko:
- Rongoā mate huka: Whakahaerehia ō taumata huka toto.
- Ngā mōhiti, ngā karaihe whakapā rānei: Whakatikahia ngā raruraru tirohanga.
- Ngā rongoā mō te mate ngakau:Whakaitihia te mōrearea o ngā raruraru mā te whakahaere i te atherosclerosis.
- Pokanga: Mena he pukupuku matepukupuku, tangohia.
Ka taea te ārai i te Werner Syndrome?
Nā te mea he mate ira tēnei, kāore e taea te ārai i te Werner Syndrome.
Heoi, ki te mea ko kōrua ko tō hoa rangatira te kaikawe i te ira mō tēnei mate, ā, e hiahia ana hoki kōrua ki te whānau tamariki, me whakaaro pea koe ki tētahi tikanga e kiia nei ko te whakamātautau ira i mua i te whakatōnga (PGT). Ko te PGT he huinga o te whakamātautau ira me te whakatōnga in vitro (IVF). Kei roto i tēnei ko te whakamātautau i ngā kukune i mua i te whakatōnga ki roto i te kōpū hei whakaiti i te tūponotanga ka riro mai i ngā tamariki ēnei hapa ira. Heoi, he uaua ake ēnei tikanga, nō reira me whakatau noa i runga i te tohutohu a te rata.
He aha atu anō tāu e hiahia ana ki te pātai atu ki tō tākuta?
Mena kei a koe te Werner Syndrome, he mea nui kia pātai atu koe ki tō tākuta i ō pātai katoa. Hei tauira, ka taea e koe te pātai i ngā mea penei:
- He mea pai kia whakamātauria he whakamātautau ira mō te Werner Syndrome?
- He aha ngā kōwhiringa maimoatanga mō te Werner Syndrome?
- Me aha ahau hei whakaiti i te mōrearea o te mate pukupuku?
- He aha ngā whakamātautau me mahi hei ārai i ngā raruraru o te Werner Syndrome?
- He aha ngā tūponotanga ka riro mai i aku tamariki te Werner Syndrome i ahau?
- He aha ngā tūponotanga ka whānau mai anō he tamaiti māku me te Werner Syndrome?
He aha atu ngā āhuatanga he rite ngā tohu?
Haunga te Werner Syndrome, he maha atu anō ngā āhuatanga e hua ai te poto o te tinana me te koroheketanga wawe. Kei roto i ēnei ko:
- Te mate De Barsy
- Te mate Gottron
- Te mate Hutchinson-Gilford (koinei te momo Progeria e pā ana ki ngā tamariki nohinohi)
- Te mate Mulvihill-Smith
- Te mate Rothmund-Thomson
- Te mate awha
He onge katoa ēnei āhuatanga, nō reira he mea tino nui kia tika te tautuhi i te mate.
He kōrero poto mō te Werner Syndrome, ā, he pēhea te noa o tōna pānga?
I kitea tuatahitia te Mate Werner i ngā tau tōmua o te rautau 1900 e tētahi tākuta ko Otto Werner tōna ingoa. Ko ngā tohu e rua i kitea tuatahitia e ia i roto i ngā tūroro taitamariki ko te katarata me ngā wāhi kanapa, mangu i runga i te kiri.
He tino onge tēnei mate. Mai i te wā i whakaputaina ai te pūrongo tuatahi mō te mate i te tau 1904, tata ki te 800 noa iho ngā kēhi kua pūrongohia i roto i ngā puka hauora.
I te Hononga o Amerika, e ai ki ngā tohunga, tata ki te kotahi i roto i te 200,000 tāngata ka pāngia e te Werner Syndrome. I te ao whānui, he iti noa iho te auau o te mate, arā, kotahi i roto i te miriona.
Heoi, he nui ake te kitea i Hapani me te rohe o Sardinia i Itari. I reira, tata ki te kotahi i roto i te 30,000, 50,000 rānei ngā tāngata e pāngia ana e tēnei mate. Ko te take o tēnei, he tokomaha ngā tāngata i aua rohe kua riro mai i a rātou tētahi whakarerekētanga ira i puta i ngā whakatipuranga kua pahure.
He uaua te mōhio kei te pāngia koe, tō hoa aroha rānei e te mate Werner Syndrome. He mea whakarihariha pea nā te mea kāore he rongoā. Heoi, mā te maimoatanga ka taea te whakaiti i te tūponotanga o ngā raruraru e morearea ai te ora.
Hei whakamutunga, ko te karere kawe ki te kāinga
He tino uaua te mate Werner Syndrome, engari kia maumahara, ehara i te mea ko koe anake.
- Whiwhi maimoatanga hauora me ngā tohutohu tika: Mā tēnei koe e āwhina ki te whakahaere i ō tohumate me te whakapai ake i te kounga o tō oranga.
- Whai i tētahi momo noho hauora: Kia nui te moe, kai i ngā kai whai kiko, whakamahia he pare rā ina haere koe i waho i te rā, ā, ngana ki te whakaiti i te ahotea. Mā ēnei mea koe e āwhina kia noho hauora.
- Rapua he tautoko: Pātai atu ki tō rōpū hauora mō ngā rōpū tautoko. Kāore pea koe e tino pāngia ana e te taumahatanga i tēnei wā, engari kia mau tonu aua mōhiohio. Tērā pea ka whai hua ā muri ake nei.
Ehara i te mea ngāwari te noho me tēnei mate onge. Engari mā te mātauranga tika, te tautoko, me te waiaro pai, ka kitea e koe te kaha ki te whakatere i tēnei haerenga.
Te mate Werner, ngā mate ira, te koroheketanga wawe, te progeria pakeke, te ira WRN, ngā raruraru hauora, te mōrearea o te mate pukupuku
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