He aha te mate a Huntington? Me kōrero māmā noa iho.

Ehara i te mea ko ō tātou āhua me ō tātou pūkenga anake i riro mai i ō tātou mātua, engari i ētahi wā ka taea hoki e tātou te tuku iho i ngā mate. He mate kino te mate a Huntington e pā ana ki ngā pūtau io i roto i te roro, ā, ka tukuna iho i ia whakatipuranga ki ia whakatipuranga . Tērā pea ka mataku koe ina rongo koe i tēnei ingoa, engari he mea tino nui kia mōhio koe ki tēnei. Nō reira, i tēnei rā, me kōrero tātou mō tēnei mea i roto i tētahi huarahi māmā, e mārama ana hoki.

He aha tonu te mate a Huntington?

He kupu ngāwari noa iho, he mate ira te mate a Huntington e tukuna iho ana i ia whakatipuranga ki ia whakatipuranga. Ka mate haere ngā pūtau io o te roro. I roto i te wā, ka huri pea tēnei i ō tātou pūkenga nekeneke, hinengaro, tae atu ki te wairua. Ka piki ake pea te tūponotanga o te whakawhanake i ngā raruraru hauora hinengaro pēnei i te pouri me te manukanuka.

Ahakoa ka tīmata te mate i ngā tau katoa, ko te nuinga o ngā tohu ka puta i waenga i te 30 me te 40 tau. Heoi, ki te tīmata te mate i te tamarikitanga, i mua rānei i te 20 tau, ka kiia ko te mate Huntington taiohi (JHD).

He mea noa te pōuri ina rongo koe i tētahi mate pēnei. Heoi, ko te whiwhi āwhina mai i tētahi kaimahi hapori, i tētahi kaiwhakatakoto whakaaro, i tētahi rōpū tautoko rānei o te hunga e noho tahi ana me te mate ka tino āwhina i a koe ki te whakatau i tēnei āhuatanga. Mā te āwhina a tētahi rōpū tohunga hauora maha-mātauranga, ka taea e te tangata whai mate a Huntington te noho motuhake mō ngā tau maha.

He aha te take o tēnei mate?

Ko te take matua mō tēnei he hapa ira. Whakaarohia he huinga tohutohu mō ia mahi i roto i tō tātou tinana, pērā i te tohutao, kua tuhia ki roto i ō tātou ira. Kei a tātou katoa te ira e puta ai te mate a Huntington (ira HD). Engari i roto i ētahi whānau, ka tukuna iho he kape hapa, kua whakarerekētia o tēnei ira mai i ngā mātua ki ngā tamariki.

Mena kei tō whaea, kei tō pāpā rānei te mate, e 50% te tūponotanga ka riro i a koe te ira hapa , ā, ka pāngia koe e te mate. Ko te tikanga, tera pea ka pāngia koe, kāore rānei. He rite ki te whiu moni.

He mea nui kia mōhio koe ki ētahi atu mea e pā ana ki tēnei:

• Ka taea te tuku iho i tēnei ira hapa e ngā tāne me ngā wāhine.
• Ki te kore koe e whiwhi i te ira hapa, e kore rawa koe e pāngia e te mate a Huntington, ā, e kore hoki e tukuna te mate ki āu tamariki.
• Kāore tēnei mate e peke i ngā whakatipuranga . Ara, kāore he huarahi e pāngia ai te tamaiti e tēnei mate mēnā kei te koroua ia, engari kāore i te matua.

Mena kei te whakaaro koe, tetahi rānei o tō whānau ki te whakamātautau ira hei tirotiro mēnā kei a koe tēnei mate, he mea nui kia tūtaki koe ki tētahi kaitohutohu ira i mua. Ka taea e rātou te āwhina i a koe ki te mārama ki ngā pānga o ngā hua o te whakamātautau, me te āwhina i a koe ki te whakarite mō aua hua.

He aha ngā tohu o tēnei mate?

E toru ngā wāhanga matua o ngā tohu o te mate a Huntington: ngā pūkenga nekeneke, te mahi hinengaro, me ngā huringa whanonga. He maha ngā tāngata whai mate nei ka pāngia e ngā tohu i ngā wāhanga e toru. Ko te tikanga ka puta ēnei tohu i runga i te wāhanga o te mate.

Ngā tohu o te mate a Huntington (JHD) i roto i ngā tamariki nohinohi

Ki te pāngia tētahi tamaiti, tētahi taiohi rānei e tēnei mate, ka tere te horapa. He maha ngā tohu motuhake ka kitea:

• Te pakari me te uaua ki te hikoi
• Te uaua ki te arotahi
• Te ngaro ohorere mai i ngā mahi kura
• Ngā wiri
• Ngā mate hopuhopu

Me pēhea te tautuhi i te mate?

Ko te wawe o te tautuhi i te mate, ko te roa ake o te wā ka taea e koe te pupuri i te kounga o tō oranga. Mena he tohu kei a koe, ka pātai tō tākuta mō tō hītori hauora whānau, ā, ka whakahaerehia he whakamātautau tinana. Hei tāpiri, ka whakahaerehia e rātou ētahi whakamātautau e pā ana ki te pūnaha io.

• Ngā whakaata
• Te kaha o te uaua
• Taurite o te tinana
• Te tirohanga me te whakarongo
• Te mahara me te kaha whakaaro

Heoi anō, ko te huarahi pai rawa atu hei whakaū i te mate ko te whakamātautau ira . Mā tēnei ka taea e koe te tino mōhio mēnā kei roto i tō tinana te ira HD hapa.

Me pēhea te rongoā me te whakahaere?

Ahakoa kāore he rongoā mō tēnei mate, he maha ngā maimoatanga hei āwhina i te whakahaere i ngā tohu me te whakangawari ake i te oranga. He kīwaha kei roto i ngā tākuta e mea ana, "E kore pea mātou e tāpiri i ngā tau ki tō oranga, engari ka taea e mātou te tāpiri i te ora ki ō tau." He pono. Ko te mea nui ko te mahi tahi a ngā tohunga o ngā momo mara ki te rongoā i a koe.

Ngā rongoā

Ka tohua pea e te tākuta ngā momo rongoā hei whakahaere i ngā tohumate.

• Mō te whakahaere nekehanga: Ka whakamahia he momo rongoā e kiia nei ko ngā 'aukati VMAT2' (hei tauira, Deutetrabenazine, Tetrabenazine) hei whakaiti i ngā nekehanga kāore i te whakahaerehia pērā i te 'Chorea'.
• Mō ngā raruraru hinengaro:Ka tohua ngā rongoā ārai pouri me ngā rongoā whakaū wairua hei rongoā i ngā āhuatanga pēnei i te pouri me te manukanuka.

Whakaora

He wāhanga tino nui ēnei o te whakahaere mate.

• Whakaora tinana: Ka āwhina i te whakaiti i ngā hinganga mā te whakapai ake i te haere me te taurite.
• Whakaora mahi: Ka whakaako i ngā tikanga me ngā taputapu e hiahiatia ana hei whakahaere tonu i ngā mahi o ia rā (te whakakakahu, te kai).
• Whakaora kōrero: He āwhina i ngā uauatanga ki te kōrero me te horomi.

Ngā huringa kai me te āhua noho

He nui ake te tūponotanga ka heke te taumaha o ngā tūroro o Huntington. Nā te mea he nui ake ngā kaora e tahuna ana e te tinana nā te nekehanga noa me te uaua ki te horomi kai. Nō reira, he mea tino nui te kai i ngā kai he nui te kaora, he kai whai kiko, he kai ngāwari ki te nakunaku, e ai ki ngā tohutohu a te tohunga kai .

Hei tāpiritanga, he tino āwhina te whakakori tinana, te kai Mediterranean, te karo i te waipiro, te moe pai, me te whakaiti i te ahotea ki te whakahaere i te mate.