He aha te Mate a Huntington? Tohutohu, Take, me te Maimoatanga

He aha te Mate a Huntington?

Ko te mate a Huntington tetahi mate roro whatukuhu e whakangaro haere ana i nga pūtau io i etahi wāhi o tō roro. Ka pā tēnei āhuatanga ki ō nekehanga, ki ō whakaaro, me ō kare-a-roto, ā, ko te take he ira kino kua riro i a koe i tētahi o ō mātua.

Whakaarohia tō roro he maha ngā kāinga, ā, ko te mate a Huntington te whakangaro motuhake i ngā wāhi e whakahaere ana i te nekehanga me te mahi hinengaro. Ka tupu haere te mate i roto i ngā tau maha, koia ka tupu haere ngā tohu i te wa roa, kāore i te puta ohorere.

He iti rawa te pānga o tēnei āhuatanga, e pā ana ki te 3 ki te 7 tangata i te 100,000 puta noa i te ao. Ahakoa he whakatau ārai nui tēnei, ko te mōhiotanga ki te mea kei te whakahaere koe ka taea te āwhina i a koe me tō whānau ki te whakarite mō te heke mai me te whiwhi i te tautoko e hiahia ana koe.

He aha ngā tohu o te Mate a Huntington?

Ka timata ngā tohu o te mate a Huntington i waenga i ngā tau 30 me te 50, ahakoa ka taea te tīmata i mua atu, i muri atu rānei. Ka pā te mate ki ngā wāhi matua e toru o tō hauora, ā, ka maha ngā tohu e whakapiri ana, ka huri haere hoki i te wā.

Ko ngā tohu nekehanga te nuinga o ngā tohu tuatahi e kitea ana:

• Ngā nekehanga wiri koretake, kōrere rānei (e kiia ana ko te chorea)
• Ngā raruraru uaua pēnei i te pakari, te ngākau rānei
• Ngā nekehanga kanohi puhoi, rerekē rānei
• Te ngoikore o te hikoi, te tu, me te toenga
• Te uaua ki te kōrero, ki te horomia rānei
• Te raruraru ki ngā pūkenga motuka pai penei i te tuhituhi

Ka pā ngā tohu hinengaro ki ō whakaaro, ā, ka rite te uaua ki ngā raruraru nekehanga:

• Te uaua ki te whakarite, ki te whakarite turanga, ki te aro ki ngā mahi rānei
• Ngā raruraru ki te ngāwari o te whakaaro
• Te raruraru ki te whakahaere i ngā whakaohooho
• Te puhoi o te tukatuka o ngā whakaaro, te kimi kupu rānei
• Ngā raruraru mahara, ina koa te ako i ngā korero hou

Ka tupu haere ngā tohu kare-a-roto me ngā tohu hinengaro me ngā huringa tinana:

• Te pouri me ngā huringa ngākau
• Te riri me te whakahē
• Te manukanuka me te wehe atu i te hapori
• Ngā whāinga obsessive-compulsive
• Te psychosis i etahi wā

Kāore ngā tohu katoa e puta i te wa kotahi, ā, he rerekē te wheako o te tangata katoa. Ka kite etahi i ngā huringa nekehanga tuatahi, ka kite etahi i ngā huringa ngākau, whakaaro rānei i mua i te puta o ngā tohu tinana.

He aha ngā take o te Mate a Huntington?

Ko te take o te mate a Huntington he rereketanga i roto i te ira kotahi e kiia ana ko te ira huntingtin (HTT). Ko te tikanga o tēnei ira te awhina i ngā pūtau roro ki te mahi tika, engari ki te kino, ka whakaputa ia i te pūmua kino e whakangaro haere ana i ngā pūtau roro.

Ka whai te āhuatanga i te mea e kiia ana e ngā tākuta he tauira tuku 'autosomal dominant'. Ko te tikanga, kotahi noa te kape o te ira kino e hiahiatia ana e koe i tētahi o ō mātua kia whanake te mate. Ki te whai tētahi o ō mātua i te mate a Huntington, 50% te tūponotanga o te rironga mai i a koe.

Kāore i rite ki ētahi atu āhuatanga, kāore he take taiao, he whiringa noho rānei e pā ana ki te mate a Huntington. He ira noa iho, koia kāore he mea ka taea e koe te aukati, te take rānei mā ō mahi.

I etahi wā, ka taea te puta ohorere o te rereketanga ira, kāore i te riro mai i tētahi mātua. Ka puta tēnei i raro i te 10% o ngā take, ā, he maha ake te puta ki te tīmata te mate i te tau iti rawa.

Nōhea te haere ki te taote mō te Mate a Huntington?

Me haere koe ki te taote ki te kite koe i ngā raruraru nekehanga roa, ina koa ngā nekehanga koretake e āwangawanga ana i ngā mahi o ia rā. Ko ngā tohu tuatahi pea ko te koretake, te uaua ki te toenga, te nekehanga wiri rerekē rānei e puta ana, e ngaro ana rānei.

Ko ngā huringa i ō whakaaro, ngākau rānei e roa ana mō ngā wiki, marama rānei, he mea nui hoki te tiaki hauora. Kei roto i ēnei te uaua ki te aro, te whakatau, te huringa ngākau rānei e kīia ana e ō whānau.

Ki te whai koe i te hītori whānau o te mate a Huntington, he mea nui te kōrero ki te taote mō te tohutohu ira, ahakoa i mua i te puta o ngā tohu. Ka taea e tēnei kōrero te āwhina i a koe ki te mōhio ki ō tūponotanga me te whakatau whakamārama mō te whakamātautau ira.

Kaua e tatari kia kaha ngā tohu i mua i te rapu āwhina. Ka taea e te whakatau i mua te uru atu ki ngā maimoatanga ka taea te whakahaere i ngā tohu me te hono atu ki ngā ratonga tautoko ka taea te whakapai ake i tō kounga ora.

He aha ngā take tūponotanga mō te Mate a Huntington?

Ko te take tūponotanga matua mō te mate a Huntington ko te whai i tētahi mātua e whai ana i te āhuatanga. Mai i te mea he mate ira autosomal dominant, 50% te tūponotanga o ia tamaiti o tētahi mātua pānga ki te riro i te ira kino.

Ka taea e te tau te awe i te wā e puta ai ngā tohu, ahakoa kāore e whakatau mena ka whanake koe i te mate. Ko te nuinga o ngā tāngata e whai ana i te mate a Huntington ka tīmata te whakaatu i ngā tohu i waenga i ngā tau 30 me te 50, engari ka taea te tīmata i mua atu, i muri atu rānei i te ora.

I etahi wā, ka taea te tīmata o te mate a Huntington taitamariki i mua i te tau 20. Ko tēnei ahua tīmatanga wawe te nuinga o te kaha ake, ka tere ake te tupu atu i te ahua pakeke. He maha ake te puta ki te riro mai te ira kino i te matua tane.

Kāore i rite ki ētahi atu āhuatanga hauora, kāore ngā take noho penei i te kai, te whakakori tinana, te whakaū taiao rānei e whakapiki, e whakaiti rānei i tō tūponotanga ki te whanake i te mate a Huntington. Ko te āhuatanga katoa e whakatau ana i te ira.

He aha ngā raruraru pea o te Mate a Huntington?

I te tupu haere o te mate a Huntington, ka taea te arahi ki ētahi atu raruraru e pā ana ki ngā āhuatanga rerekē o tō hauora me tō oranga o ia rā. Ko te mōhiotanga ki ēnei wāhi pea ka taea te āwhina i a koe me tō whānau ki te whakarite me te rapu i te tiaki tika.

Ka tupu haere ngā raruraru nekehanga i te wā:

• Te nui ake o te tūponotanga o te hinga na te raruraru toenga me te whakahaere
• Te uaua ki te horomia, ka taea te arahi ki te ngākau pouri, ki te mate huha rānei
• Ngā raruraru nekehanga nui e āwangawanga ana i te hikoi, te tiaki whaiaro rānei
• Ngā uaua honohono, te pakari rānei e āwangawanga ana i te nekehanga

Ka taea e ngā raruraru hinengaro me ngā whāinga te pānga nui ki te mahi o ia rā:

• Te uaua haere ki te whakatau me te whakaoti rapanga
• Te pouri nui pea kei roto ngā whakaaro whakamomori
• Te whāinga whakahē ka taea te pakaru i ngā hononga
• Te whakawhirinaki katoa ki ētahi atu mō te tiaki o ia rā

Ka taea te whanake o ngā raruraru hauora i te tupu haere o te mate:

• Te ngaro o te taumaha me te kore kai na te raruraru kai
• Ngā mate manawa mai i ngā raruraru horomia
• Ngā raruraru ngākau i etahi wā
• Ngā raruraru mai i ngā hinga, i ngā whara rānei

Ahakoa ngā raruraru nei e rangona ana he nui rawa, ka taea te whakahaere i te maha mā te tiaki hauora tika me te tautoko. Ko te mahi tata atu ki tō rōpū hauora ka taea te āwhina i te aukati, i te whakaiti rānei i te maha o ēnei take.

Me pēhea te whakatau i te Mate a Huntington?

Ko te whakatau i te mate a Huntington te nuinga o te whakauru i te arotake hauora, te hītori whānau, me te whakamātautau ira. Ka tīmata tō taote mā te kōrero mō ō tohu me tetahi hītori whānau o te āhuatanga.

Ka āwhina te whakamātautau neurological ki te aromatawai i ō nekehanga, te whakahaere, te toenga, me te mahi hinengaro. Ka tono pea tō taote kia mahi koe i ngā mahi ngāwari penei i te hikoi, te neke i ō maihao, te whakautu i ngā pūrongo rānei ki te aromatawai me pēhea te pānga o te mate ki a koe.

Ka taea e ngā rangahau whakaahua roro, penei i ngā tātaritanga CT, MRI rānei, te whakaatu i ngā huringa āhuatanga o te roro e puta ana me te mate a Huntington. Ka āwhina ēnei tātaritanga ki te whakakore i ētahi atu āhuatanga, ka taea te whakaatu i te nui o ngā huringa roro.

Ko te whakamātautau ira te tino whakatau. Ka taea e te whakamātautau toto ngāwari te kite i te ira huntingtin kino. Ki te whai koe i ngā tohu me te whakamātautau ira pai, ka whakau te whakatau. Ka taea hoki tēnei whakamātautau i mua i te puta o ngā tohu ki te whai koe i te hītori whānau o te mate.

Ka āwhina ngā aromatawai hinengaro me ngā hinengaro ki te aromatawai i te mahi hinengaro me ngā tohu ngākau. Ka taea e ēnei whakamātautau te kite i ngā huringa i mua i te whakaaro, te mahara, me te ngākau pea kāore i te marama i te oranga o ia rā.

He aha te maimoatanga mō te Mate a Huntington?

Ahakoa kāore he rongoā mō te mate a Huntington i tēnei wā, he maha ngā maimoatanga ka taea te āwhina i te whakahaere i ngā tohu me te whakapai ake i te kounga ora. Ko te whāinga ko te āwhina i a koe ki te pupuri i te mahi me te wātea mo te roa e taea ana.

Ka taea e ngā rongoā te āwhina i te whakahaere i ngā tohu rerekē:

• Tetrabenazine, deutetrabenazine rānei mō ngā nekehanga koretake
• Ngā rongoā antipsychotic mō te chorea nui me ngā tohu whāinga
• Ngā rongoā antidepressants mō te pouri me te manukanuka
• Ngā kaiwhakawātea ngākau mō te riri me te whakahē

Ka āwhina te whakakori tinana ki te pupuri i te nekehanga me te toenga me te whakaiti i te tūponotanga o te hinga. Ka taea e tō kaiwhakakori te whakaako i a koe i ngā whakakori hei pupuri i ngā uaua kaha me te ngāwari, me te tūtohutia ngā taputapu āwhina ina hiahiatia.

Ka nui te mahi a te whakakori kōrero i te pānga o te mate ki tō kaha ki te kōrero me te horomia. Ka taea e te kaiwhakakori kōrero te āwhina i a koe ki te kōrero pai ake me te whakaako i ngā tikanga horomia haumaru hei aukati i te ngākau pouri.

Ko te mahi a te whakakori mahi te aro ki te āwhina i a koe ki te whakarite i ngā mahi o ia rā me te pupuri i te motuhake. Pea kei roto i ēnei te whakarerekē i tō kāinga, te ako rānei i ngā huarahi hou ki te mahi i ngā mahi i te huringa o ō kaha.

He mea nui te tautoko kai i te tupu haere o ngā raruraru horomia. Ka taea e te kaiwhakahaere kai te āwhina i te whakarite kei te whiwhi koe i te kai tika, me te tūtohutia ngā whakarerekē i te kakano, ngā tāpiri rānei i te hiahiatia.

Me pēhea te whakahaere i te Mate a Huntington i te kāinga?

Ko te hanga i tētahi taiao kāinga haumaru me te tautoko ka taea te whakarerekē nui i te whakahaere i te mate a Huntington. Ka taea e ngā whakarerekē ngāwari te āwhina i a koe ki te pupuri i te motuhake me te whakaiti i te tūponotanga o ngā whara.

Ko ngā whakarerekē haumaru i tō kāinga kei roto te tango i ngā mohiti ngawari, te tāpiri i ngā pou e pupuri ana i ngā arawhata, me te whakarite i te mārama pai puta noa i tō wāhi noho. Whakaarohia te whakarerekē i ngā taonga hei hanga i ngā huarahi mārama me te whakaiti i te tūponotanga o te hinga.

Ko te whakarite i ngā mahi ka taea te āwhina i ngā tohu hinengaro me te whakaiti i te whakawareware. Whakamātauria te pupuri i ngā wā kai, ngā mahi rongoā, me ngā mahi o ia rā. Ko te whakamahi i ngā karere, ngā tuhinga whakamaharatanga, me ngā kaiwhakarite rongoā ka taea te āwhina i ngā raruraru mahara.

Ko te kai he mea nui te aro i te tupu haere o te mate. Aro ki ngā kai whai hua, whakaarohia te kai i ngā kai iti ake, maha ake rānei ki te uaua te horomia. Pupuri i te wai, mahi tahi me tō rōpū hauora ki te uaua te kai.

Ko te noho mahi i roto i ō kaha he mea nui mō te hauora tinana me te hinengaro. Ko ngā whakakori ngawari penei i te hikoi, te kauhoe, te whakatete rānei ka taea te āwhina i te pupuri i te kaha o ngā uaua me te ngāwari me te whakarato i ngā painga ngākau.

Ko te hanga me te pupuri i ngā hononga hapori ka āwhina i te whawhai i te wehe me te pouri. Noho hono atu ki te whānau me ngā hoa, whakaarohia te uru atu ki ngā rōpū tautoko, kaua hoki e mangere ki te tono āwhina ina hiahia koe.

Me pēhea te whakarite mō tō hui taote?

Ko te whakarite mō ō haerenga ki te taote ka taea te āwhina i te whakarite kei te whiwhi koe i te tino pai mai i ō huihuinga me te whakautu i ō awangawanga katoa. Tīmata mā te tuhi i ngā tohu katoa kua kite koe, tae atu ki te wā i tīmata ai rātou me te āhua o te huringa.

Kawe mai i te rārangi katoa o ō rongoā o nāianei, tae atu ki ngā horoinga me ngā tāpiri kore-kaute. Waiho hoki ngā pānga taha pea kei te pānga koe mai i ngā maimoatanga o nāianei.

He mea nui te mōhiohio hītori whānau mō te mate a Huntington. Kohikohia ngā kōrero mō ngā whānau pea kua whai i te āhuatanga, tae atu ki ō rātou tohu me te tau tīmatanga. Ka āwhina tēnei mōhiohio i tō taote ki te mōhio pai ake ki tō āhuatanga motuhake.

Whakaarohia te kawe mai i tētahi mema whānau, hoa rānei ki tō hui. Ka taea e rātou te āwhina i a koe ki te mahara ki ngā pūrongo hei ui, ki te tuhi i ngā kōrero i te wā o te haerenga, me te whakarato i ngā tirohanga atu mō ngā huringa kua kite rātou i a koe.

Whakaritea he rārangi pūrongo i mua. Pea ka hiahia koe ki te ui mō ngā whiringa maimoatanga, te tupu pea, ngā rauemi mō te tautoko, te whakarite rānei mō te heke mai. Kaua e manukanuka ki te maha o ngā pūrongo – e hiahia ana tō taote ki te āwhina i a koe ki te mōhio ki tō āhuatanga.

He aha te mea nui mō te Mate a Huntington?

He āhuatanga ira wero te mate a Huntington, engari ko te mōhiotanga ki a ia ka whakamana i a koe ki te whakatau whakamārama mō tō tiaki me tō heke mai. Ahakoa he mate tupu haere tēnei, he maha ngā tāngata e ora ana i ngā oranga whai hua mō ngā tau i muri i te whakatau me te tautoko tika me te maimoatanga.

Ka taea e te whakatau i mua me te maimoatanga te whakapai ake i tō kounga ora me te āwhina i a koe ki te pupuri i te mahi mō te roa. Ko te mea nui ko te mahi tata atu ki tō rōpū hauora hei whakawhanake i tētahi mahere tiaki whānui e whakautu ana ki ō hiahia me ō tohu motuhake.

Mahara kāore koe i te kotahi i roto i tēnei haerenga. Ka taea e ngā rōpū tautoko, ngā tohunga hauora, me ngā whakahaere e whakatapua ana ki te mate a Huntington te whakarato i ngā rauemi, ngā mōhiohio, me te tautoko ngākau mō koe me tō whānau.

Ko te whakarite i mua, ahakoa he uaua, ka taea te āwhina i te whakarite kei te whakautehia ō hiahia me te whakaiti i te ahotea mō ō aroha. Whakaarohia te kōrero mō ō hiahia mō te tiaki heke mai ki tō whānau me tō rōpū hauora i te wā kei te taea e koe te whakatau mārama i ēnei whakatau.

Ngā pūrongo e ui pinepinetia ana mō te Mate a Huntington

P1: Ka taea te aukati i te mate a Huntington?

Aroha mai, kāore e taea te aukati i te mate a Huntington mai i te mea he rereketanga ira te take. Engari, ka taea e te tohutohu ira te āwhina i ngā tāngata tūponotanga ki te mōhio ki ō rātou tūponotanga ki te whanake i te mate me te whakatau whakamārama mō ngā whakatau whakarite whānau. Ka whiriwhiri etahi i te whakamātautau ira i mua i te whānau tamariki ki te mōhio ki ngā tūponotanga o te tuku i te āhuatanga ki ō rātou uri.

P2: E hā roa ngā tāngata e ora ana me te mate a Huntington?

Ko te roa o te ora i muri i te tīmatanga o ngā tohu ko te 15 ki te 20 tau, ahakoa he rerekē nui tēnei mai i te tangata ki te tangata. Ka taea e etahi te ora roa ake, ka taea e ētahi te tere ake o te tupu. Ko te ahua taitamariki te nuinga o te tere ake te tupu atu i te mate a Huntington tīmatanga pakeke. Ko te kounga ora me te tiaki hauora tika he mea nui ki te oranga whānui puta noa i te huarahi o te mate.

P3: Kei te tūtohutia te whakamātautau ira mō ngā mema whānau?

He whakatau whaiaro te whakamātautau ira me mahi tahi me te tohutohu ira. Ka taea te mahi i te whakamātautau i mua i te puta o ngā tohu, engari he mea nui te whakaaro ki te pānga hinengaro o te mōhiotanga ka whanake koe i te mate. Ka whiriwhiri etahi ki te mōhio kia taea ai e rātou te whakarite i ō rātou oranga, ka whiriwhiri ētahi ki te kore e whakamātautau. Kāore he whiringa tika, he he rānei.

P4: Ka taea e ngā huringa noho te whakaiti i te tupu o te mate a Huntington?

Ahakoa kāore e taea e ngā huringa noho te aukati, te whakaiti rānei i te tupu o te mate, ko te pupuri i te hauora whānui pai ka taea te āwhina i a koe ki te pai ake te rongo me te mahi mō te roa. Ko te whakakori tinana, te kai tika, te noho mahi hinengaro, me te whakahaere i te ahotea pea ka āwhina ki ngā tohu me te oranga whānui. Ka taea hoki e te whakakori tinana me te whakakori kōrero te āwhina i te pupuri i te mahi mō te roa.

P5: He aha ngā tautoko kei te wātea mō ngā whānau e whakahaere ana i te mate a Huntington?

He maha ngā rauemi kei te wātea tae atu ki te Huntington's Disease Society of America, ngā rōpū tautoko rohe, ngā kaiwhakaako ira, me ngā rōpū hauora motuhake. Ka whakarato ēnei whakahaere i te mātauranga, te tautoko ngākau, te tautoko, me te āwhina mahi. He maha hoki ngā hapori e whai ana i ngā ratonga tiaki wātea me ētahi atu kaupapa tautoko mō ngā whānau e pā ana ki te mate a Huntington.