Hei whaea, hei pāpā rānei, ka aro nui koe ki ngā huringa iti katoa o te tinana o tāu tamaiti, tika? I ētahi wā, ko te mea iti rawa e kitea ana e tātou he tohu pea mō tētahi mea nui ake. I tēnei rā ka kōrero tātou mō tētahi mate tino onge, engari he mea nui kia mōhio te katoa ki tēnei mate. Ko tēnei mate ko Fibrodysplasia Ossificans Progressiva, ko FOP rānei te whakarapopototanga.
He aha rawa te FOP?
Ki te kī ngāwari, ko tēnei mate te wā e huri haere ai ngā kiko ngohengohe o tō tātou tinana, pērā i ngā uaua, ngā hononga, me ngā uaua, hei wheua. Whakaarohia, kei reira ngā uaua o tō tātou tinana hei ngāwari me te neke. Kei reira ō tātou wheua hei whakarato i tētahi hanganga me tētahi anga pakari. He tino rerekē ngā mahi a ēnei pūnaha e rua.
Engari i roto i tēnei āhuatanga onge e kiia nei ko te FOP, ka pakaru tēnei pūnaha whakahaere. Ka tīmata te tinana ki te huri i ngā kiko ngohengohe hei wheua māna ake. Me te mea kei te tipu tētahi angaanga hou i roto i a tātou, i waho atu i tō tātou angaanga noa.
I te hanganga o ngā wheua hou i tēnei ara, ka uaua haere te nekeneke o ngā wāhanga rerekē o te tinana, ā, i ētahi wā ka kore e taea. Nā tēnei ka uaua haere ngā mahi o ia rā, pērā i te kōrero me te kai.
I te nuinga o te wā ka tīmata tēnei āhuatanga i te wā tamarikitanga. Ka tīmata tuatahi i te kaki me ngā pakihiwi, ā, ka horapa haere ki te tinana o raro. I te pakeketanga o te tangata, ka piki ake te nui o ngā wheua e whakakapi ana i ngā kiko ngohengohe. Heoi, ka rerekē te tere o te whanaketanga o tēnei mate i ia tangata, i ia tangata.
He aha tēnei e tupu nei? He aha te take?
Ko te tino take he hapa iti i roto i te ira e tohutohu ana i te tinana ki te whakatipu i ngā wheua me ngā uaua. Inaa, ahakoa i roto i te whanaketanga hauora, ka huri ētahi kiko ngohengohe hei wheua. Engari nā tēnei hapa ira, ka nui ake te wheua e hangaia ana e te tinana i tā te tinana e hiahia ana, i te wā kāore e hiahiatia ana.
I te nuinga o te wā, ehara tēnei i te mea tuku iho mai i ngā mātua ki ngā tamariki. Heoi, he tino onge te tupu. I te nuinga o te wā, he huringa matapōkere o ngā ira (ngā whakarerekētanga hou) e puta ana i te wā e ora ana.
He aha ngā tohu matua o tēnei mate?
E rua ngā tohu matua hei āwhina i te tautuhi i tēnei mate. He mea tino nui kia mōhio ki tēnei.
Ko te tohu tuatahi, ko te tohu tino kitea, ka kitea i te whānautanga. He poto ake ngā mātiti nui o ngā waewae e rua i te mea noa, ā, ka anga whakaroto, arā, ki ngā mātiti kē atu. Mō te 50% o ngā tamariki, ka kitea te rerekētanga ōrite i ngā mātiti nui o ngā ringa. He tohu tuatahi tino nui tēnei hei whakapae i tēnei mate.
Ko te tuarua o ngā tohu matua ko te hurihanga o te kiko ngohengohe kua whakahuatia ake nei hei wheua. I te nuinga o te wā ka tīmata tēnei me te putanga mai o ngā tipu mamae, rite ki te pukupuku i te tuara, te kaki, me ngā pakihiwi. Ka kiia hoki ēnei puku he "flare-ups". Ka huri ēnei puku hei wheua i roto i te wā. Ka taea e ēnei pupuhi te puta pinepine puta noa i te oranga.
| Momo tohu | Whakaahuatanga |
|---|---|
| Tohu whānau | He poto ake i te tikanga ngā mātiti nui o ngā waewae e rua, ā, e anga whakaroto ana ki ngā mātiti kē atu. |
| Ngā mura o te ahi | Ka puta ngā puku mamae ki te tinana (he maha ngā wā kei te kaki, pakihiwi, tuara). Ka roa pea ēnei puku mō te 6-8 wiki, kātahi ka huri hei wheua. |
Ngā take o te pupuhi
He mea nui kia mōhio: Ko te whara iti, te hinganga, te pokanga, te werohanga rānei (tae atu ki te werohanga rongoā mō te tango niho) te tino take o ēnei puku mamae (ngā pupuhi). Nō reira, me tino tupato te tangata whai mate pēnei i mua i te whiwhi maimoatanga hauora. Ahakoa he mate huaketo ka taea te whakararu i tēnei mate.
I te wā e pā mai ana te mate, ka puta pea ngā tohu pēnei i te mamae, te pupuhi, te pakari o ngā hononga, te āhua ngoikore, me te kirika iti huri noa i ngā puku.
He aha ngā raruraru ka puta mai i tēnei āhuatanga?
I te hurihanga o ngā kiko ngohengohe o te tinana hei wheua, ka iti te nekenekehanga, ka ara ake ai ngā raruraru maha.
- Te uaua ki te manawa: Ki te huri ngā uaua o te uma hei wheua, kāore e taea e ngā pukahukahu te whānui katoa.
- Te uaua ki te kai: Ki te whakawhāitihia te nekehanga o te hononga kauae, ka uaua ki te whakatuwhera i te waha me te kai. Ka arahi pea tēnei ki te korenga o ngā kai totika.
- Te ngaronga o te taurite o te tinana: Te uaua ki te pupuri i te taurite i a koe e hikoi ana, e noho ana rānei.
- Te uaua ki te kōrero
- Te korokoro
- Ngā mate urutā auau: Nā te kore nekehanga, ka nui ake te mōrearea o ngā mate urutā e pā ana ki te ihu, te korokoro, me ngā pukahukahu.
- Te tūponotanga o te mate ngakau: I ētahi wā, ka pā pea tēnei ki te mahi a te ngakau.
Me pēhea te tautuhi i te mate?
I te nuinga o te wā, ka whakapae te tākuta mō tēnei mate ina kite rātou i ēnei tohu matua e rua i te wā e tirotirohia ana te tinana—te rerekētanga o te māhunga o te waewae me ngā puku i te tuara me ngā pakihiwi.
Hei whakaū he FOP tēnei, ka taea te whakahaere i tētahi whakamātautau toto motuhake (whakamātautau ira) hei tautuhi i te hapa ira e puta ai te mate.
He mea tino nui: He maha ngā wā ka pohehetia te FOP mō te mate pukupuku, mō ētahi atu mate onge rānei. Nō reira, ki te mahia he mahi pēnei i te koiora i runga i te whakapae, ka tino kino. Nā te mea ko te whara te tino take o te kino haere o te mate me te hanganga wheua hou. Nō reira, ki te pāngia tō tamaiti e ēnei tohu, he mea nui kia kōrero koe ki te tākuta mō tō whakapae mō te FOP, me te toro atu ki tētahi tākuta he tohunga ki tēnei mara.
He rongoā kei reira mō tēnei?
Engari, kāore anō kia kitea he rongoā mō tēnei mate, ā, he iti noa ngā huarahi hei rongoā.
Ka tohua pea e tō tākuta ētahi rongoā, pērā i te corticosteroids, hei whakahaere i te mamae me te pupuhi e puta ana i te wā e pupū ake ai te mate.
Hei tāpiritanga, hei whakangāwari ake i ngā mahi o ia rā, ka taea e koe te tiki taputapu āwhina pēnei i ngā hū motuhake me ngā whitiki tautoko mā te āwhina a tētahi kaiwhakaora mahi.
Karere Tangohia ki te Kāinga
- He mate ira tino onge te FOP e huri ai ngā kiko ngohengohe, tae atu ki ngā uaua, i roto i te tinana hei wheua.
- Ko tētahi o ngā tohu matua o tēnei mate ko te poto o te māhunga nui, ā, ka anga ki roto ina whānau he tamaiti.
- Ko tētahi atu tohu matua ka puta ake i muri mai ko te pupuhi mamae i runga i te mata o te tinana.
- He mea tino nui: Ka taea e ngā whara iti, ngā hinganga, ngā werohanga, inā koa ko ngā koiora te whakararuraru nui i te mate.
- Ki te whakapae koe kei tō tamaiti ēnei tohu, me toro atu ki te tākuta tonu, ka whakapuaki i ō whakapae mō te FOP.
- Ahakoa kāore anō kia kitea he rongoā mō tēnei mate, kei reira ngā maimoatanga hei āwhina i te whakahaere i ngā tohumate me te whakamāmā ake i te oranga.
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