Kua whakaaro kē koe he aha te āhua o te kite i te ao i roto i te pango, te mā, me ngā atarangi hina anake, kāore he tae? Ki ētahi tāngata, koinei te āhua o ia rā. I tēnei rā, kei te kōrero tātou mō tētahi mate tirohanga onge engari he mea nui e mōhiotia ana ko te Achromatopsia. Kaua e mataku; me wehewehe ngātahi tātou i tēnei.
He aha te Achromatopsia?
He whakarāpopototanga noa iho, he mate tirohanga whānau mai, he mate ira te Achromatopsia. Ko te nuinga o te wā ka pā ki tō kaha ki te kite i ngā tae. He āhua pumau tēnei mate, arā, kāore e kino haere i roto i te wā. He mea whakamarie tēnei, kāore?
Whakaarohia te kore e taea te wheako i ngā putiputi kanapa, i te rangi kikorangi hohonu, i ngā tae e whitu o te āniwaniwa e kore nei e arohia e tātou. He ngāwari te kite i te pānga o tēnei ki te oranga o ia rā.
He momo rerekē?
Āe, e rua ngā momo matua o te Achromatopsia:
- Te Achromatopsia Katoa: Ko te pango, te mā, me ngā atarangi hina anake te mea e kitea ana e koe, he rite tonu ki te mātakitaki i te ao mā roto i tētahi kiriata pango-mā tawhito.
- Te Achromatopsia Kore-oti: I konei, tera pea ka kitea e koe ētahi tae, engari he ahua ngoikore, he memeha, he koretake rānei—pēnei i tētahi whakaahua kua whakaitihia te tae. He uaua tonu te wehewehe i waenga i ngā tae rerekē.
He aha te rerekētanga i waenga i te Achromatopsia me te Matapo Tae?
He tokomaha e whakapoauau ana i ngā mea e rua, engari he rerekētanga nui kei te taha hauora.
Ko te matapo tae e pā ana ki te hunga he tino koi te tirohanga; ka kite mārama rātou i ngā mea engari he uaua ki te wehewehe i ngā tae motuhake, pērā i te whero me te kakariki.
Heoi, he uaua ake te Achromatopsia . Haunga te korenga o te tirohanga tae, he maha ngā wā ka heke te mārama o te tirohanga a te hunga e pāngia ana, arā, ka pōuri pea ō rātou tirohanga. Hei tāpiri, ka puta pea ngā nekehanga tere o ngā kanohi e mōhiotia ana ko te nystagmus , ka uaua ai ngā mahi o ia rā.
Hei whakarāpopototanga: mēnā he rite te matapo tae ki tētahi tātari tae hē, he rite tonu te Achromatopsia ki ētahi raruraru huna o te pūnaha kāmera katoa.
He aha te tūponotanga ka pā mai tēnei mate ki ahau?
Ka tukuna te Achromatopsia mā roto i ō ira. Mena kei roto i tō whānau tētahi o tō whānau—i te taha o tō whaea, o tō pāpā rānei—tērā pea ka mau i a koe te āhuatanga. Ina koa, mena kei ngā mātua e rua te whakarerekētanga ira, kotahi i roto i te whā (25%) te tūponotanga ka whānau mai ia tamaiti me te āhuatanga. Ahakoa kāore e pāngia ana ia tamaiti katoa, kei reira tonu te mōrearea ira.
He aha te take o te Achromatopsia?
E ai ki te kōrero, he mate ira tēnei. Kei muri o tō kanohi te retina, e mahi ana pērā i te kiriata i roto i te kāmera. Kei roto i te retina ngā pūtau motuhake e aro ana ki te mārama e kiia nei ko ngā photoreceptors e tuku ana i ngā mōhiohio tirohanga ki te roro.
E rua ngā momo matua o ngā kaiwhakarongo whakaahua:
- Ngā Kone: Koinei ō "tohunga tae." Ka āwhina rātou i a koe ki te kite i ngā tae, ā, ka whakarato tirohanga koi i ngā āhuatanga mārama o te awatea.
- Ngā tokotoko: Ka mahi ēnei hei "kaitiaki pō," hei āwhina i a koe ki te kite i ngā taiao iti te mārama, ahakoa kāore e kitea te tae.
I roto i te hunga whai Achromatopsia, kāore e mahi tika ngā koeko .
- I te Achromatopsia katoa, ka whakawhirinaki katoa te tirohanga ki ngā tokotoko, koia te take kāore he tae.
- I roto i te Achromatopsia kāore i oti, ka mau tonu ētahi mahi toenga o ngā koeko i te taha o ngā tokotoko, ka hua ake he ngoikore, he ngoikore te kitenga o te tae.
Kua tautuhia e te pūtaiao ētahi whakarerekētanga ira e whakararuraru ana i te mahi a te koeko.
He aha ngā tohu o te Achromatopsia?
He rerekē ngā tohu i ia tangata, i ia tangata, engari ko te nuinga o te wā ko:
- Scotomas: Ngā ira pōuri, ngā ira matapo rānei i roto i tō tirohanga.
- Te tirohanga pōuri: He maha ngā wā ka puta tahi me te astigmatism.
- Matapo tae: Te kore e kite, e wehewehe rānei i ngā tae.
- Te tirohanga tawhiti rawa atu.
- Te aro nui ki te hihi o te rā, ki te mārama horihori rānei: Te tino aro ki te hihi o te rā, ki te māramatanga hangai rānei.
- Te Matapōuri: Te tirohanga tata.
- Te tirohanga kino, te tirohanga pōuri rānei: He uaua ki te kite i ngā taipitopito iti.
- Nystagmus: He nekehanga tere, auau, ā-koretake o ngā kanohi.
Āhea te nuinga o te wā ka puta mai ngā tohu i roto i ngā tamariki?
I te nuinga o te wā, ka kitea te tino aro ki te mārama (photophobia) i roto i ngā marama tuatahi o te oranga. Tērā pea ka kamo te pēpi, ka tangi, ka menemene rānei i te mārama kanapa. Ahakoa he maha atu ngā raruraru tirohanga kei te whānau mai, ka kite pinepine ngā mātua i ēnei raruraru i te pakeketanga o te tamaiti, nā te mea kāore pea i te tamaiti te kupu hei whakamārama i te kore e taea e ia te kite i ngā tae.
Me pēhea te tautuhi i te Achromatopsia?
Ka whakatauhia te mate e te tākuta kanohi. Ina toro atu koe, tāu tamaiti rānei ki te whare hauora, ka tīmata te tākuta me te tirotiro i te hītori whānau me te arotake i ngā tohu.
I te wā o te whakamātautau retina, tera pea te āhua noa o te tuara o te kanohi, koia pea ka tūtohu tō tākuta i ngā whakamātautau motuhake hei whakaū i te mate, pēnei i:
- Whakamātautau tirohanga tae: Ka ine tēnei i tō kaha ki te wehewehe i waenga i ngā tae rerekē.
- Te autofluorescence o te fundus: Ka whakamahia he mārama kikorangi motuhake hei tirotiro i ngā kiko o te retina i muri o tō kanohi.
- Te hiko o te kanohi: Ka aromatawaihia e tēnei te urupare a ō kanohi me ō rātou io ki te māramatanga.
- Ko tētahi wāhanga nui o tēnei ko te Electroretinography (ERG) . Mā tēnei ka ine i te urupare hiko o ngā pūtau kōne me ngā pūtau tokotoko ki te mārama, hei āwhina i a tātou ki te aromatawai tika i te pai o te mahi a ō pūtau kōne.
- Tomography honohono-ā-whatu (OCT): Mā tēnei ka puta he whakaahua whakawhiti-wāhanga o tō retina, he rite tonu ki te matawai mō te tātaritanga taipitopito.
- Whakamātautau mara tirohanga: Mā tēnei ka tautuhia mēnā he ira matapo kei a koe, ā, mēnā he ira matapo, ka whakatauhia tōna rahi me tōna pānga ki tō tirohanga.
Ahakoa te ahua uaua o ēnei whakamātautau, kaua e mataku. Ka whakamahia e tā mātou tīma hauora ēnei aromatawai hei whakaū tika i tō mate, hei whakarato hoki i te mahere tiaki pai rawa atu ki a koe.
He rongoā anō kei te wātea mō te Achromatopsia?
He mea nui kia kōrero tika: kāore anō kia kitea he rongoā mō te Achromatopsia i tēnei wā. Kāore he rongoā, he pokanga rānei e wātea ana hei whakakore i tēnei mate.
Heoi, ehara tēnei i te kī kāore e taea e koe te ora i tētahi oranga whai hua, kounga teitei hoki. Kāore rawa!
Ahakoa tēnei mate, ka taea e koe te noho motuhake mā te whakanui ake i tō tirohanga e toe ana, te whakamahi i te tautoko pāpori, me te whakahaere pai i ō tohu. Ko te taahiraa nui ko te mārama ki tō mate me te whakarerekē i tō momo noho kia rite ki ō hiahia.
Ko te arotahi matua o te maimoatanga ko te whakahaere i ngā tohu me te whakarei ake i tō whakamarie o ia rā me ō pūkenga mahi.
Ngā karu motuhake
Ko tētahi rautaki whakahaere noa ko te whakamahi i ngā karaihe pouriKa tātarihia e ēnei karāhe ngā roangaru mārama kino, kāore rānei i te pai, ā, ka āwhina nui tēnei ki te whakaiti i ngā tohu o te photophobia (te aro ki te mārama). Ko ētahi anga kua hangaia kia toro atu ki ngā taha hei whakarato i te taupoki mōrahi, ā, ko ētahi pea he ārai. Ahakoa he āhua rite ki ngā mōhiti kanohi, he taputapu hauora motuhake ēnei kua whakaritea mō ō hiahia.
Te rongoā mō te tirohanga iti
He wāhanga nui tēnei o tō tiaki. Mā te rongoā tirohanga iti koe e ako ki te whakahaere i ngā mahi o ia rā me te haumaru, me te ngāwari hoki. Ko ētahi tauira:
- Te whakamahi i ngā taputapu whakanui hiko hei pānui pukapuka, tuhinga me ētahi atu rauemi me te ngāwari.
- Te ako ki te whakamahi i te tokotoko roa ma hei whakatere haumaru i a koe e neke ana i ngā taiao tauhou.
- Te whakawhanake i ngā rautaki hei tautuhi me te karo i ngā tūponotanga mōrearea ka hinga i tō taiao.
- Te urutau ki te kawe waka a te iwi mēnā kāore e taea e koe te taraiwa.
- Mā te whakamahi i ngā rauemi tino rerekē ; hei tauira, mā te whakamahi i te tuhinga pango i runga i te pepa mā ka māmā ake te pānui.
Mā tēnei whakangungu, ka taea e koe te pupuri i tētahi taumata teitei o te tū motuhake i roto i tō oranga o ia rā.
Ka taea te ārai i te Achromatopsia?
Nā te mea he mate ira tēnei, kāore e taea te ārai. Kāore he mea i roto i tō kai, i tō momo noho rānei e taea te ārai i tēnei mate kei puta.
Heoi, ki te mea kei roto i tō whānau tēnei āhuatanga, ā, kei te āwangawanga koe mō te tuku i te ira ki āu tamariki, ka taea e koe te whakaaro ki te whakamātautau ira . Ka taea e ngā hua te āwhina i a koe ki te mārama ki te tūponotanga ka riro mai i āu tamariki te āhuatanga, he mea nui pea tēnei i roto i tō whakamahere whānau.
He aha te tirohanga mō te tangata whai Achromatopsia?
Ahakoa he āhua whakamataku pea, he pai te matapae mō te hunga whai Achromatopsia.
- Tamariki: Ka taea e ēnei tamariki te haere ki ngā kura noa. Kāore te Achromatopsia e pā ki te kaha ako. Heoi, me tautoko pea rātou hei wikitoria i ngā wero e pā ana ki te tirohanga (hei tauira, te whakamahi i ngā tuhinga nui, te whakarerekē rānei i te rama o te akomanga). Mena he mōhio pai ngā kaiako me ngā mātua , kāore he arai ki te whiwhi mātauranga pai o te tamaiti.
- Ngā Pakeke: He maha ngā wā ka noho motuhake ngā pakeke whai Achromatopsia. Tērā pea ka hiahia tonu koe ki te tautoko tonu hei whakarerekē i tō taiao me ngā mahi o ia rā, engari ka taea e koe te whai i tētahi mahi me te whai wāhi kaha ki te hapori.
Ko te mea nui ko te whakarite kei a koe te tautoko, te māramatanga, me ngā rauemi e tika ana hei oranga mōu.
Te noho me te Achromatopsia: Ngā Tohutohu Hira
He maha ngā tikanga me ngā whakarerekētanga hei āwhina i a koe ki te whakanui ake i tō haumaru, tō whakamarie, me tō mana motuhake.
Te whakarerekē i te taiao o tō kāinga:
- Te whakaritenga o ngā taonga: Kia kore he raruraru i roto i tō wāhi noho hei ārai i ngā tukinga, i ngā hinganga rānei.
- Ārai matotoru: Whakamahia he ārai matotoru mō ō matapihi hei whakahaere i te nui o te mārama taiao e tomo mai ana ki roto i tō whare, nā te mea ka kore e pai te mārama o te rā.
- Whakaitihia te kanapa: Whakamahia ngā peita tae-matte ki ngā pakitara hei whakaiti i te kanapa.
- Te Whakaritenga: Puritia ngā taonga nui ki ngā wāhi ōrite, e ngāwari ai te uru atu, mā te whakamahi pea i ngā tapanga nui, mārama hoki hei āwhina i a koe ki te tautuhi i aua mea.
Ngā mahi o ia rā:
- Āta karohia te māramatanga kanapa: Whakamātauria te whakawhāiti i ngā mahi o waho i ngā wā tino pīrahi o te rā. Ki te mea me haere koe ki waho, mau tonu ō karu kanohi motuhake me te pōtae.
- Ngā kaipānui mata:Mena he āhuatanga whakararuraru te pānui i ngā whakaaturanga i runga i ngā rorohiko, i ngā waea rānei nā te kanapa, whakaarohia te whakamahi i tētahi pūmanawa pānui mata e pānui ana i ngā ihirangi me te reo nui.
- Hangarau āwhina: He tino whai hua ngā matawai ringaringa ka taea te tautuhi i te tae o ngā mea i roto i tō oranga o ia rā.
- Mauria he pōtae whai pari: Ina kei waho, ina koa i te rā, mauria he pōtae whai pari hei tiaki i ō kanohi mai i te mārama tika, kaha hoki.
Ngā whakaaro whakamutunga
He mate onge, he mate tuku iho te Achromatopsia, e pā ana ki te tirohanga tae me te kounga tirohanga whānui. Ahakoa he uaua ngā tohu i ētahi wā, kāore e hiahiatia kia whakawhāiti i tō pūmanawa.
Kia maumahara, mā te māramatanga tika, ngā karu motuhake, te whakangungu tirohanga iti , me te tautoko a te hunga e arohaina ana e koe, ka taea e koe te noho motuhake me te whai tikanga.
Mena kei te pāngia koe, tetahi atu rānei e mōhio ana koe, ko te huarahi pai ko te toro atu ki tētahi tākuta kanohi hei ārahi i a koe. Kāore he take e manukanuka ai koe, e whakama ai rānei. Ko te wawe o te tautuhi i ēnei āhuatanga, ko te wawe hoki o te whiwhi i te tiaki me te tautoko e hiahiatia ana e koe mai i Nirogi Lanka.
Achromatopsia, Tirohanga Tae, Whakararuraru Tirohanga, Ngā Mate Ira, Retina, Ngā Pūtau Kone, Ngā Pūtau Tokotoko
