Kāore tātou e aro nui ana ki ētahi o ngā tohu e puta ana i roto i ō tātou tinana, e tika ana? E whakaaro ana tātou he mamae iti noa iho, he ponana kiri iti, he ngenge noa iho rānei. Engari i ētahi wā, i muri i ēnei tohu noa, tera pea he mate hauora onge, he kino hoki. I tēnei rā ka kōrero tātou mō tētahi o aua mate ira, ko te Mate Fabry. Ahakoa he mate onge tēnei, he mea tino nui kia mōhio koe me tō whānau ki tēnei.
He aha te mate Fabry?
He kupu ngāwari noa iho, ko te mate Fabry he mate ira e kore ai e taea te wawahi tika i tētahi momo ngako i roto i ngā pūtau o tō tātou tinana, ka puta ai he ngako nui ki roto i ō tātou whekau. Ina puta he ngako nui, ka taea e ia te kino i ngā whekau tino nui o tō tātou tinana, pērā i ngā whatukuhu, te ngākau, me te pūnaha io.
Ko te āhuatanga motuhake o tēnei mate, he rerekē ngā tohu i ia tangata, i ia tangata . Mō ētahi tāngata, he tino ngawari ngā tohu, kāore e kitea, engari mō ētahi atu, ka kaha rawa atu, ā, ka pā ki ō rātou oranga. Waihoki, nā te mea he rite ēnei tohu ki ērā o ētahi atu mate noa, i ētahi wā ka taea te tātaritanga i te mate i te wā tōmuri.
He aha ngā tohumate e kitea whānuitia ana?
Ka taea e te tangata whai mate Fabry te pāngia e ētahi tohu maha i te wā kotahi. Me titiro tātou ki ngā tohu matua me ngā tohu tino kitea o ēnei.
| Tohu | He aha te āhua o tēnei? |
|---|---|
| Te mamae i ngā ringa me ngā waewae | He wera, he ngoikore, he ngenge , he mamae koi rānei i roto i ngā kapu me ngā kapu o ngā ringa. I ētahi wā, kāore e taea te manawanui ki tēnei mamae. |
| Ngā ira kiri | He maha ngā wā ka puta mai hei tautau ira iti, whero pouri, papura rānei i waenganui i te papa me ngā turi. Kāore ēnei e mamae i te nuinga o te wā. |
| Te hekenga o te werawera | He iti ake te werawera i te tikanga, kāore rānei ētahi tāngata e werawera ana, ā, he uaua ki te manawanui ki te werawera, ki te whakakori tinana rānei. |
| Te kirika auau | Te pāngia tonutia e te kirika, kāore he take motuhake. |
| Pupuhi waewae | Te pupuhi, inā koa i ngā waewae o raro, i ngā pona waewae, me ngā waewae. He tohu pea tēnei kei te pāngia ngā whatukuhu. |
| Ngenge rawa | Te ngenge nui me te ngoikore i te roanga o te rā, kāore e memeha ahakoa te moe pai, te okioki rānei i te pō. |
| Ngā raruraru o te pūnaha nakunaku | Ko ngā tohu ko te mamae o te puku i muri tonu i te kai, te kī tonu, te nekeneke pinepine o te puku, te whakapairuaki, me te ruaki. |
He rerekētanga kei waenganui i ngā wāhine me ngā tāne?
Āe, tino tika. Nā te āhua ira o te mate, he nui ake te tūponotanga ka pāngia ngā tāne e te mate . Waihoki, he nui ake te kitea me te kaha o ngā tohu i roto i ngā tāne.
Ahakoa ka pāngia ngā wāhine e te mate Fabry, he tokomaha kāore pea e pāngia e tetahi tohu, e ngawari rānei ngā tohu. Heoi, ehara tēnei i te kī kāore ngā wāhine e pāngia e te mate. Tērā pea ka pāngia ētahi wāhine e te mate kino, inā koa te mamae o ngā io. Nō reira, ehara i te mea pai kia warewarehia ngā tohu nā te mea he ngawari noa iho.
He aha te pānga o tēnei ki ngā okana rerekē?
Ka kino ngā wāhanga rerekē o te tinana i te kohi ngako i roto i te mate Fabry. Kia kite tātou me pēhea.
Ngā whatukuhu
Ko tētahi o ngā raruraru tino kino me te morearea o tēnei mate ko te ngoikore o te whatukuhu. Ka whakawhāitihia e ngā putunga ngako i roto i ngā oko toto ngā oko toto e tuku ana ki ngā whatukuhu, ka kino ai ngā whatukuhu. Ko ngā tohu pea ko te pūmua, te toto rānei i roto i te mimi, me te pupuhi o ngā waewae. I ngā take kino, me mahi pea te dialysis mō te wā katoa, te whakawhitinga whatukuhu rānei.
Pūnaha io
He maha ngā tāngata ka pāngia tuatahitia e te mate Fabry me te mamae o ngā io. Ko ngā tohu matua ko te wera, te ngoikore, me te mamae e kore e taea te whakamanawanui, inā koa i ngā ringaringa me ngā waewae. Ka roa pea ēnei āhuatanga mamae mō ngā hāora, tae noa ki ngā rā. Ka haere tahi hoki tēnei mamae me te mamae tinana, te kirika, me te tino ngenge.
Ngākau
He mea noa anō hoki te mate manawa. Ka puta pea he pāorooro o te ngakau, he matotoru te uaua o te manawa, he raruraru rānei ki ngā takirere o te manawa (pērā i te ngoikore o te mitral). Ka taea hoki e ēnei āhuatanga te whakanui ake i te mōrearea o ngā raruraru nui pērā i te whiu.
Kiri
Ko te tohu matua ko ngā ira whero pouri (angiokeratomas) i kōrerotia i mua ake nei. Mō ngā tama, ka kitea nuitia ēnei i ngā ringa, i ngā turi, i ngā tuke, me te rohe i waenganui i ngā hope me ngā turi. Kāore i te tino tūpono ka pāngia ngā wāhine e ēnei ira.
Ngā kanohi
He tohu tino motuhake tēnei. Tērā pea ka puta mai ngā rārangi mā, he rite ki te kohu, ngā tauira porowhita rānei (ngā porowhita o te kornea) i runga i te mata o te kanohi e tata ana ki te kornea. Ahakoa kāore ēnei e whakararuraru i te tirohanga, he tohu tino nui ēnei mā te tākuta ki te tautuhi i te mate Fabry.
Kāore e kitea pinepinetia ēnei momo panoni kanohi i roto i ētahi atu mate, nō reira he āwhina nui tēnei āhuatanga ki te tautuhi i te mate Fabry.
Taringa
Tērā pea ka pāngia ētahi e te tangi o ngā taringa, arā, te "Tinnitus". Tērā pea ka pāngia haeretia te rongo i roto i te wā, i te ohorere rānei.
Ngā pukahukahu me te pūnaha nakunaku
Tērā pea ka puta ngā tohu manawa pēnei i te tangi 'whooshing' i te wā e manawa ana, te poto o te manawa, me te maremare pinepine. Waihoki, tata ki te haurua o ngā wāhine ka pāngia e ngā tohu e rite ana ki te Irritable Bowel Syndrome (IBS) (mamae puku, pupuhi).
E rua ngā momo o te mate? (Momo 1 me te Momo 2)
Āe. E rua ngā momo matua o te mate Fabry.
1. Momo Matarohia (Momo 1): Ka tīmata tēnei i te tamarikitanga. Ko te mumura me te mamae o ngā peka me ngā waewae tetahi o ngā tohu tuatahi i te wā tamarikitanga.
2. Momo tīmatanga tōmuri (Momo 2): I tēnei momo, he mea noa te tamarikitanga me te taiohitanga. Ka tīmata ngā tohu i muri i te 20 tau te pakeke, neke atu rānei.
Ahakoa te momo, ka kino haere te mate i te kaumātuatanga. Ko te take matua o tēnei ko te pikinga ake o ngā putunga ngako tinana i roto i te wā.
Tērā pea koe e whakaaro ana he mate onge tēnei, ā, kāore pea e pā ki a koe. Engari, ki te mea kua roa koe, tetahi rānei o tō whānau e pāngia ana e ētahi o ngā tohu kua whakahuatia i roto i tēnei tuhinga, kaua e warewaretia. Ko te mea pai ko te toro atu ki te tākuta i te wā e taea ai, me te kōrero mō tēnei mate.Ka whakahaerehia e ia ngā whakamātautau e tika ana, ā, ka kitea te take o ēnei tohu.
Karere Tangohia ki te Kāinga
- He mate ira onge te mate Fabry e puta ai te kohi ngako i roto i ngā whekau o te tinana.
- Ko ngā tohu matua ko te mumura o ngā ringa me ngā waewae, te ngoikore, ngā ira whero pouri i te kiri, te heke o te werawera, me te tino ngenge.
- Ka taea e tēnei mate te kino kino ki ngā whekau nui pērā i ngā whatukuhu, te ngākau, me te pūnaha io.
- He nui ake te kitea, te kaha hoki o ngā tohu i roto i ngā tāne, engari he ngawari noa iho, he kore rānei he tohu o ngā wāhine.
- Mena kei a koe, kei tētahi rānei o tō whānau tētahi, ētahi rānei o ngā tohu kua whakahuatia i roto i tēnei tuhinga, ā, ka roa te mau tonu, me toro atu ki tō tākuta tonu mō ētahi tohutohu.
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