Ka pāngia koe e te mamae me te mumura e kore e taea te tu atu i ō ringaringa me ō waewae, me ngā ira whero iti i tō tinana? Ina pāngia koe e ngā tohumate kāore e pā ana, he raruraru nui pea. I tēnei rā kei te kōrero tātou mō tētahi āhuatanga ka puta ai ngā tohumate rite, engari he tokomaha te iwi o tō tātou whenua kāore anō kia rongo mōna. Ko te Mate Fabry tēnā.
Renal function (eGFR)
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He aha te mate Fabry?
He mate ira tuku iho te mate Fabry, he mate ira tuku iho. He tino onge. He matū ngako kei roto i ngā pūtau o te tinana o te tangata e pāngia ana e tēnei mate. Whakaarohia te mea ka tupu mēnā kāore te kaikōhi para e haere mai ki tō mātou whare mō ētahi rā? Ka kohia ngā para ki roto i tō mātou whare, tika? Koinā te āhua. I roto i tēnei mate, kāore te whākōkī e wawahi ana, e tango ana i tēnei matū ngako mai i ō mātou pūtau e hangaia ana i roto i te tinana, kāore rānei e mahi tika.
Ina kohia te ngako pēnei, ka tīmata te whaiti o ō tātou uaua toto. Ka pā kino pea tēnei ki te kiri, ki ngā whatukuhu, ki te ngākau, ki te roro, me te pūnaha io . Ka kiia hoki tēnei e ngā tākuta he "mate rokiroki". Ka tīmata ēnei tohu i te tamarikitanga. Ā, he nui ake te kitea i roto i ngā tāne i ngā wāhine.
Kaua e manukanuka. Ahakoa kāore he rongoā mō tēnei, kei reira ngā maimoatanga pai e wātea ana i ēnei rā hei āwhina i a koe ki te whakahaere i ō tohumate me te noho i te oranga noa.
He aha te take o te mate Fabry?
He mate ira tūturu tēnei. Arā, he mea tuku iho i tō whaea, i tō pāpā rānei. Me whai whākōkī e kīia nei ko te alpha-galactosidase A hei wawahi i ngā mea pēnei i te hinu, te ware pi, me ngā waikawa ngako i roto i ō tātou tinana. Kāore i te tangata whai mate Fabry tēnei whākōkī, ki te mea kei a rātou, kāore e mahi tika. Nō reira, e ai ki taku kōrero i mua, ka tīmata tēnei momo ngako ki te hanga i roto i ngā pūtau.
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Check Availability →He aha ngā tohu o tēnei mate?
Ka rerekē ngā tohu o te mate Fabry i ia tangata, i ia tangata. Ka pāngia ētahi e ēnei tohu, engari kāore i te tino pāngia ētahi. Me titiro tātou ki ngā tohu matua ka kitea.
| Tohu | Whakaahuatanga |
|---|---|
| Te mamae me te mumura i roto i ngā peka | Ka piki ake te mamae i te wā e whakakorikori tinana ana koe, ina pāngia koe e te kirika, ina werawera rawa koe, ina ngenge rānei koe. |
| Ngā ira kiri | He iti ngā ira whero pouri, papura rānei, e kitea nuitia ana i te rohe i waenganui i te papa me ngā turi. |
| Ngā ngoikoretanga tirohanga | Ngā āhuatanga pēnei i te tirohanga pōuri, te katarata rānei. |
| Ngā uauatanga o te whakarongo | Te ngaronga o te rongo, te "tangi" tonu rānei i roto i ngā taringa. |
| Te hekenga o te werawera | He iti ake te werawera i te werawera o te tangata noa. |
| Ngā raruraru o te pūnaha nakunaku | Te mamae o te puku me te hiahia ki te tūtae i muri tonu i te kai. |
Ngā raruraru nui
Ka taea e te mate Fabry te whakararu i ngā raruraru nui ake i roto i te wā. He tino nui tēnei mōrearea i roto i ngā tāne. Heoi, ka taea hoki e ngā wāhine kei a rātou te ira mō tēnei mate (ngā kaikawe) te whakawhanake i ngā tohu. Nō reira, he mea tino nui kia mōhio ngā wāhine ki tēnei mate, kia rapu tohutohu hauora hoki i ngā wā katoa.
- Te piki ake o te mōrearea o te whakaeke ngakau, te whiu rānei .
- Te kino nui o te whatukuhu me te ngoikore o te whatukuhu.
- Te toto toto tiketike.
- Te ngoikore o te ngakau me te whakanui o te ngakau.
- Te angiangi o ngā wheua (Osteoporosis).
Me pēhea te tautuhi tika i tēnei mate?
Ki te pono, ka roa pea te wā ki te tautuhi i te mate Fabry. Ko te take he rite ngā tohu ki ērā o ētahi atu mate. Nō reira, kāore ētahi tāngata e mōhio kei a rātou te mate Fabry tae noa ki ngā tau i muri i te tīmatanga o ngā tohu. I taua wā, tera pea kua toro atu rātou ki ngā tākuta rerekē mō ngā tohu rerekē, ā, i ētahi wā ka hē ngā tautuhi i puta.
Mena kua pāngia tētahi o tō whānau e ēnei tohu, ā, ki tō whakaaro kei te mōrearea koe, he mea pai kia kōrero koe ki tō tākuta mō ngā whakamātautau ira .
Ina haere koe ki te tākuta, ka tirotirohia koe e ia, ka pātai atu hoki i ngā pātai pēnei i:
- Kei te pēhea koe?
- He aha ō tohumate?
- Nōnahea ēnei i tīmata ai?
- Kei roto i tō whānau tētahi o ēnei āhuatanga?
I runga i ēnei mōhiotanga, ki te whakapae te tākuta he mate Fabry pea tēnei, ka tono ia kia whakamātauria tō toto (hei tirotiro i te taumata o te whākōkī alpha-galactosidase A i kōrerotia e au) he whakamātautau DNA rānei.
Me pēhea te rongoā?
E rua ngā maimoatanga matua mō te mate Fabry.
1. Te Whakaora Whakakapinga Whākōkī (ERT): Koinei te tikanga e whakamahia whānuitia ana. Ko te tikanga tēnei ko te hoatu i tētahi whākōkī e ngaro ana, e kore rānei e mahi tika ana ki te tinana mā te wai tote. I te nuinga o te wā ka mahia tēnei i roto i te hōhipera, i te whare hauora rānei, tata ki te kotahi i ia rua wiki. Ka mutu te kohikohinga o te ngako i roto i te tinana i tēnei maimoatanga, ā, ka whakahaere i te mamae me ētahi atu tohu.
2. Migalastat (Galafold): He rongoā hou tēnei ka taea te tango hei pire. Ka mahi mā te whakatau i te whākōkī e kore e mahi tika ana, me te whakapai ake i tana mahi.
Haunga ēnei maimoatanga matua, ka tūtohu pea tō tākuta i ētahi atu maimoatanga i runga i ō tohumate.
- Ngā rongoā whakamamae mō te mamae i puta mai i te kino o te io.
- Rongoā mō ngā mate puku.
- Ngā rongoā whakaheke toto hei ārai i te toto e pupuhi ana.
- Ngā rongoā mō te toto toto tiketike me te tiaki i ngā whatukuhu.
Mena kua tino kino ngā whatukuhu i te mate, tera pea e hiahiatia he dialysis, he whakawhitinga whatukuhu rānei.
Ngā whakamātautau e aroturuki ana i tō āhua
I te wā e rongoatia ana koe, ka whakahaerehia e tō tākuta ngā whakamātautau maha hei aroturuki i tō āhua.
| Whakamātautau | He whakamārama māmā |
|---|---|
| EKG (Electrocardiogram) | Te ine i te ngohe hiko o te ngākau, te tirotiro i te tere me te manawataki o te ngākau. |
| Te Echocardiogram | He matawai ultrasound o te ngākau. Mā tēnei ka ine i te hauora me te mahi a ngā wāhanga o te ngākau. |
| MRI roro | Te tiki whakaahua taipitopito o te roro me ētahi atu okana. |
| Matawai CT | Te tango pikitia taipitopito o roto o te tinana mā te whakamahi i ngā hihi-X. |
| Ētahi atu whakamātautau | Ngā whakamātautau toto, mimi, tairoi, whakamātautau whakarongo me te tirohanga, whakamātautau mahi a ngā pukahukahu. |
Karere Tangohia ki te Kāinga
- He mate tuku iho, he mate ira te mate Fabry. Kāore e taea te hopu.
- He maha ngā tohu kāore e pā ana ka puta ngātahi, pērā i te mamae nui o ngā peka, ngā ira whero o te kiri, me te heke o te werawera.
- Tērā pea ka roa te wā ki te tautuhi i te mate, engari mā ngā whakamātautau toto me te DNA ka taea te whakaū tuturu i te mate.
- Ahakoa kāore e taea te whakaora katoa i tēnei mate, kei reira ngā maimoatanga whai hua ināianei (pēnei i te ERT) ka taea te whakahaere i ngā tohu, te ārai i ngā raruraru nui, me te āwhina i te tangata kia ora noa.
- Kaua rawa e mahue ngā maimoatanga me ngā whakamātautau e hoatu ana e tō tākuta ki a koe. He mea tino nui te whai tonu i ngā tohutohu a tō tākuta mō tō hauora ā muri ake nei.
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