He puku iti kei roto i ētahi wāhanga o tō tinana? He iti rānei tō rongo, ā, he pōuri te ngākau? Ahakoa e whakaaro ana tātou he mea noa ēnei, i ētahi wā kei muri i ēnei mea he āhuatanga ira kāore anō kia rangona. I tēnei rā ka kōrero tātou mō tētahi o aua mate. Ko tēnei mate ko te Neurofibromatosis Type 2, ko te ingoa poto rānei e mōhiotia ana e tātou katoa ko te NF2 . Ahakoa he ahua uaua tēnei, kia mārama tātou ki tēnei mea.
He aha te NF2?
He mate ira te NF2 e pā ana ki tō tātou pūnaha io. Nā te panonitanga o tētahi ira i roto i tō tātou tinana, ka whiwhi te tinana i te tohu hē hei whakaputa i te maha rawa o ngā pūtau. Ka kohia ēnei pūtau taikaha, ka hanga he pukupuku.
Ko te mea pai rawa atu, he pai te nuinga o ēnei puku, ehara i te matepukupuku . Ko te tikanga, kāore e horapa ki ētahi atu wāhanga o te tinana. Heoi, i runga i te wāhi e puta ai ēnei puku, ka pāngia pea tātou e ngā raruraru maha.
Ko ngā wāhi tino noa ka puta ai ēnei puku:
- Ngā io puta noa i te tinana (ngā io ā-taha).
- Te kiriuhi i waenganui i te roro me te angaanga (meninges).
- Tuaiwi.
- Ko ngā io e hono ana i te roro me te taringa o roto, e āwhina ana ki te whakarongo me te taurite.
Ko te NF2 he mate nō tētahi rōpū mate e kiia nei ko te 'neurofibromatosis'. Ko te nuinga o tēnei rōpū mate ka pā ki tō tātou kiri me te pūnaha io.
He pēhea te noa o tēnei mate?
Ehara tēnei i te mate tino noa. E ai ki ngā tatauranga, kotahi i roto i te 33,000 tamariki i whānau puta noa i te ao e pāngia ana e te NF2. Tata ki te 3% o ngā tūroro neurofibromatosis katoa kua tautuhia he tūroro NF2.
He aha ngā tohu o te NF2?
Ka rerekē pea ngā tohu o te NF2 i ia tangata, i ia tangata. Ka whakawhirinaki ki te wāhi kei reira ngā pukupuku i roto i tō tinana me te rahi o aua pukupuku. Mō te tini o te tangata, ko ngā tohu tuatahi ka puta mai i ngā pukupuku i roto i ngā io e whakahaere ana i te whakarongo.
Ko ngā tohu tuatahi e puta mai ana ko ngā panonitanga o te tirohanga, o te whakarongo rānei. Mēnā ka pāngia koe e tētahi mea pēnei, me toro atu ki te tākuta.
Mā te ripanga i raro nei koe e āwhina ki te mārama ake i ēnei tohu.
| Momo tohu | Whakaahuatanga |
|---|---|
| Ngā tohu tōmua o ngā pukupuku io whakarongo | |
| Ngā raruraru taurite | Te pōuriuri, te kore e taea te pupuri i te taurite i te wā e hikoi ana. |
| Ngā uauatanga o te whakarongo | Te ngaromanga haere o te rongo i te taringa kotahi, i ngā taringa e rua rānei. |
| Te rongonga i te tangi i roto i ngā taringa (Tinnitus) | Te rongo tonu i tētahi tangi e tangi ana i roto i ngā taringa, ahakoa kāore he tangi. |
| Ngā tohu i puta mai i ngā pukupuku o ētahi atu io | |
| Ānini | Ngā mamae o te upoko e maha ana, kāore e whakaorangia e ngā rongoā whakamamae noa. |
| Te ngoikore o te uaua, te ngoikore rānei | Te ngenge, te ahua kore ora rānei i ngā wāhi pērā i ngā ringaringa, ngā waewae, te mata rānei. |
| Pararutiki kanohi | Te kore e taea te whakahaere tika i tetahi taha o te mata. |
| Ngā huringa kiri | Te putanga mai o ngā pona, o ngā papa rānei i runga i te mata o te kiri. |
| Ngā raruraru tirohanga | Te tirohanga pōuri, te katarata. |
| Mamae | Te rongo i te werawera i roto i ngā ringa me ngā waewae. |
| Ngā mate hopuhopu | Te putanga mai o ngā āhuatanga e rite ana ki te taunga. |
Ka tīmata ngā tohu i waenganui i te mutunga o te tamarikitanga me te 30 tau te pakeke. Heoi, ka pāngia te tangata o ngā tau katoa e te mate. Ko ngā pakeke te hunga ka pāngia e ngā raruraru whakarongo i te tuatahi. Heoi, ko ngā tamariki te hunga ka pāngia e ngā pukupuku i roto i te roro, i te taurakira rānei. Ko te tīmatanga o ngā tohu i te tamarikitanga te tikanga ka kaha ake te mate.
He aha ngā momo puku ka puta i te NF2?
He maha ngā momo pona matua ka kitea i roto i te NF2. Me titiro poto tātou ki a rātou.
| Momo Pukupuku | Te wāhi taketake me te taiao |
|---|---|
| Schwannomas | Ka puta mai ēnei i ngā pūtau e kiia nei ko ngā pūtau Schwann. Ko te nuinga o te wā ka kitea i roto i te io whakarongo, e hono ana i te roro ki te taringa (e kiia ana ko ngā schwannomas vestibular ). Ka taea hoki e rātou te whanake i roto i ngā io e āwhina ana i ngā mea pēnei i te nekehanga o te kanohi, te nekehanga o te arero, me te horomi. |
| Ngā Meningioma | He momo pukupuku ēnei e puta mai ana i roto i te roro. Ina koa, ka puta mai i roto i ngā kiriuhi (meninges) i waenganui i te roro me te angaanga. |
| Ngā Glioma | He momo pukupuku anō hoki tēnei e puta mai ana i roto i te roro. Ka puta mai ēnei i ngā pūtau e kiia nei ko ngā pūtau glial. Ka kitea pinepinetia ēnei i te taha o ngā io whatu. |
| Ngā Ependymoma | He momo glioma anō hoki tēnei. Ka puta i roto i te roro me te taurakira. Ka puta mai i ngā pūtau e whakaputa ana i te wai i roto i te roro (wai cerebrospinal - CSF). |
He aha te take e puta ai te NF2? He aha te take?
Ko te take matua mō tēnei he panonitanga ira kei roto i te ira `NF2` i roto i tō tātou tinana. Ka āwhina tēnei ira ki te hanga i tētahi pūmua e kiia nei ko te `merlin`. Ko te mahi matua o tēnei pūmua he aukati i te hanganga o ngā pukupuku (te kaitātari pukupuku).
Nō reira, ina puta he panoni i roto i te ira `NF2`, kāore te pūmua `merlin` e hangaia tika ana. Kātahi ka tīmata ētahi pūtau o tō tātou tinana ki te wehewehe me te whakanui me te kore e taea te whakahaere. Koinei te huarahi e kohikohi ai ngā pūtau taikaha, ka hanga ai i ngā pukupuku.
E rua ngā huarahi e taea ai e tātou te whiwhi i tēnei rerekētanga ira:
1. Ira Tuku Iho: Mena kei tētahi o ngā mātua tēnei whakarerekētanga ira, e 50% te tūponotanga ka riro mai i te tamaiti tēnei whakarerekētanga (tauira 'autosomal dominant').
2. Matapōkeretia: I ētahi wā, ahakoa kāore he tangata o te whānau e pāngia ana e te mate, ka puta matapōkeretia pea he whakarerekētanga ira hou i te wā e hapu ana. Koinei te āhua o te nuinga o ngā tūroro NF2 e pāngia ai e te mate.
Ko wai kei te mōrearea? He aha ngā raruraru ka pā mai?
Mena kei te pāngia tētahi o tō whānau, inā koa ō mātua, e te NF2, kei te tūpono anō hoki koe ki te pāngia e te mate.
He maha ngā raruraru ka puta mai i te NF2.
- Te ngaronga katoa o te rongo.
- Te ngaronga katoa o te tirohanga.
- Te pakaru o te io.
- Te pupūnga wai i roto i te roro.
He tino onge te hurihanga o ētahi pona NF2 hei matepukupuku, nō reira he mea tino nui te tirotiro hauora auau.
Me pēhea te tautuhi i tēnei mate?
Ka tirohia koe e te tākuta, ka whakahaerehia hoki ngā whakamātautau maha hei whakaū mēnā kei a koe tēnei mate. Tuatahi, ka tirotirohia e rātou te tinana. Ka tirohia e rātou ngā mea pēnei i ngā huringa o tō kiri me te taurite o tō tinana. Kātahi ka pātai atu rātou mō ō tohu me tō hītori hauora whānau.
Hei tāpiri, ka taea te whakahaere i ngā whakamātautau e whai ake nei:
- Matawai MRI: Ka taea e tēnei te kite mārama mēnā he pukupuku kei roto i tō pūnaha io me tō kiri.
- Whakamātautau whakarongo: Tirohia tō taumata whakarongo.
- Whakamātautau kanohi: Tirohia mēnā he katarata, he raruraru kanohi rānei.
- Whakamātautau ira: Tirohia mēnā he whakarerekētanga ira kei roto i te ira 'NF2'.
He aha ngā maimoatanga mō te NF2?
Ina hoki, kāore anō kia kitea he rongoā mō te NF2. Heoi, kua tino pai ake te tātaritanga me te maimoatanga o te mate. Ka āwhina ēnei maimoatanga ki te whakahaere i ngā tohu me te āwhina i a koe kia noho noa i te ao e taea ana. He rerekē te maimoatanga i ia tangata, i ia tangata. Mā tō tākuta e whakatau ko tēhea te maimoatanga e pai ana māu.
| Tikanga maimoatanga | He aha te mea e mahia ana |
|---|---|
| Pokanga | Ka mahia te pokanga hei tango i ngā puku, i ngā katarata rānei. |
| Te rongoā matū, te rongoā irahiko rānei | Ka whakamahia ēnei maimoatanga hei whakaiti i te rahi o ngā pukupuku. Hei tauira, ko te radiotherapy stereotactic he maimoatanga radiation. |
| Ngā taputapu whakarongo | Hei tiaki me te whakapai ake i te whakarongo, ka whakamahia ngā taputapu pēnei i ngā taputapu whakarongo, ngā mea tāpiri cochlear, me ngā mea tāpiri roro auditory. |
| Ngā āwhina tirohanga | Ka whakaratohia hoki ngā taputapu pēnei i ngā mōhiti kanohi mō te hunga he ngoikore te tirohanga. |
| Ngā āwhina nekenekehanga | Mena ka raru te hikoi nā te kino o te io, ka whakaratohia he taputapu nekenekehanga. |
| Ngā rongoā | He maha ngā rongoā e hoatu ana hei whakahaere i ngā tohumate pēnei i te mamae. |
I ētahi wā, ki te kore ō puku e whakararuraru nui i a koe, ka whakatau pea tō tākuta ki te aroturuki i aua puku me te kore e rongoā. Heoi, he mea nui kia tirotirohia te tinana, kia tirotirohia ngā kiri, kia whakamātauria hoki te whakarongo me te tirohanga i te iti rawa i te kotahi i te tau hei aroturuki i te ahunga whakamua o te mate.
Ko te tīma hauora e rongoā ana i tēnei
Nā te mea he mate te NF2 e pā ana ki ngā pūnaha tinana maha, ka rongoatia e tētahi rōpū tohunga. Ko te tikanga kei roto i tēnei rōpū:
- Ngā Tākuta Niho-kankera: Ngā tākuta e tohunga ana ki ngā mate pukupuku me ngā pukupuku o te pūnaha io.
- Ngā taote pokanga roro: Ngā taote pokanga e tohunga ana ki te pūnaha io.
- Ngā taote pokanga ENT: Ngā taote pokanga taringa, ihu, me te korokoro.
- Ngā Tohunga Whakarongo: Ngā tohunga whakarongo.
- Ngā kaitohutohu ira: Ngā tohunga e tuku tohutohu ana mō ngā mate ira.
He pānga taha kei te rongoā?
Āe, pērā i ngā maimoatanga katoa, ka pāngia pea ēnei maimoatanga e ngā pānga taha. Ka rerekē i runga i te momo maimoatanga.
He tūponotanga kei roto i te pokanga hei tango i ngā pukupuku. Nā te mea kei roto ēnei pukupuku i ngā wāhi tino tairongo pērā i te roro me te taurakira, he tūponotanga kei reira pērā i te toto, te mate urutā, me te kino o ngā io. Engari ka whakapau kaha tō tīma pokanga ki te whakaiti i ēnei tūponotanga.
I roto i te chemotherapy me te radiation therapy,
- Te kōroke
- Korere
- Ngenge
- Te ngaro o te makawe
- Hiahia kai
- Whakapairuaki me te ruaki
Ngā pānga taha pēnei i te: I mua i te tīmatanga o te maimoatanga, kōrero ki tō tākuta mō ngā pānga taha ka pā mai.
He aha tāu e taea te kī mō te roanga o te ora o tēnei mate?
He maha ngā āhuatanga e pā ana ki te roanga o te oranga o te tangata e pā ana ki te NF2. Ko te rahi o ngā whara, tōna wāhi, me te tau i kitea tuatahitia ai te mate, ko ētahi o ngā mea nui. I ētahi wā, kāore pea ngā whara e puta he tohu. I ētahi wā anō, ka tino kino ngā tohu.
Ko te mea pai ko te tautuhi wawe i te mate, me te tīmata i te maimoatanga i mua i te whanaketanga o ngā raruraru . Kātahi ka pai ake te tirohanga. I runga i te pānga o ō tohu ki a koe, ka taea e tō tākuta te hoatu he matapae tika ake ki a koe.
Ka taea te ārai i te NF2?
Kāo. Nā te mea he mate ira te NF2, kāore e taea te ārai. Heoi, ki te mea he hītori whānau tō te mate, ā, kei te whakaaro koe ki te whānau, me whai tohutohu ira i mua i te whānautanga o te tamaiti.He mea tino nui kia tirohia ēnei e whai ake nei: Kia mārama ake ai koe ki te mōrearea o te whakawhanaketanga o tēnei mate e tāu tamaiti.
Karere Tangohia ki te Kāinga
- He mate ira te NF2 e puta ai ngā pukupuku i roto i te pūnaha io. Ko te nuinga o ēnei pukupuku ehara i te matepukupuku.
- He mea noa ngā tohu pēnei i te ngaronga o te rongo, te raruraru taurite, te panoni o te tirohanga, te ponana kiri, me te ānini.
- Ahakoa kāore e taea te whakaora katoa i tēnei mate, he maha ngā maimoatanga whai hua hei whakahaere i ngā tohu me te whakapai ake i te kounga o te oranga.
- He mea tino nui te tautuhi wawe i te mate, me te tirotiro i a koe anō i raro i te mana o tētahi rōpū tākuta tohunga.
- Mena he hītori tō whānau mō ēnei mate, whakaarohia te rapu tohutohu ira i mua i te whānau tamariki.
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