Kua kite, kua rongo rānei koe i tētahi tangata e tipu nui haere ana ōna wāhanga tinana – hei tauira, he ringa, he waewae rānei – ā, he nui rawa atu i ērā atu? Mēnā rānei ka matotoru ake te kiri i ētahi wāhi, ka rite ki ngā puku rerekē? He tino onge tēnei mate. I tēnei rā ka kōrero tātou mō tētahi mate he ahua rerekē, engari he mea nui kia mōhio te katoa. Ko te ingoa o tēnei mate ko te Proteus Syndrome.
Know your body mass index (BMI) and weight classification
He aha te Mate Proteus?
He kupu ngāwari noa iho, he mate ira tino onge te Proteus Syndrome. Ka nui rawa te tipu o ngā wheua, te kiri, ngā whekau o roto, ngā kiko rānei o tō tinana. He mea nui, he koretake te nuinga o tēnei tipu. Ko te tikanga he rerekē te pānga ki ngā taha matau me ngā taha maui o te tinana. Tērā pea he nui ake tētahi taha, engari he noa pea tētahi taha.
Ko "Proteus" te ingoa o tēnei, i reira tētahi atua Kariki onamata ko "Proteus" tōna ingoa, ka taea e ia te huri ki tētahi āhua. Ka huri anō hoki tēnei mate i te āhua o te tinana, nō reira i tapaina ai.
Kāore he tohu o tēnei āhua i te nuinga o te wā e whakaatuhia ana e te pēpi whānau hou. Ka tīmata tēnei whanaketanga rerekē i waenga i te 6 me te 18 marama te pakeke . Kātahi ka tere haere i roto i ngā tau 10 tuatahi o te oranga, ā, ka kaha ake te kino i a rātou e pakeke haere ana. Haunga ngā panonitanga o te āhua tinana, ka pāngia pea ētahi tāngata e ngā raruraru pūnaha io. Ka nui ake hoki te mōrearea o te hunga whai mate Proteus ki te toto totoka me ngā pukupuku kore-matepukupuku .
Ko wai ka pāngia e tēnei? He pēhea te noa o tēnei?
Ka pāngia te tangata katoa e te mate Proteus, engari kua whakaatuhia e ētahi rangahau he nui ake te kitea o tēnei mate i roto i ngā tāne i ngā wāhine.
He tino onge tēnei mate . E pāngia ana e te iti iho i te kotahi i roto i te miriona tāngata puta noa i te ao. Nā te mea he tino onge, ā, nā te mea he maha atu anō ngā mate e whakaatu ana i te tipu koretake, he uaua ki te tautuhi tika. Nō reira, he uaua ki te kī e hia ngā tāngata e pāngia ana e tēnei mate. E whakapono ana ngā tākuta kāore ētahi tāngata i tautuhia, ā, kua hē te tautuhi i ētahi. Heoi, e whakaponohia ana he iti iho i te kotahi rau tāngata puta noa i te ao e pāngia ana e tēnei mate.
National Eye Institute AREDS 2 clinical formula with Lutemax 2020 Lutein & Zeaxanthin to filter harmful blue light and protect the macula, retina, and lens clarity.
View Clinical Details →He aha ngā tohu? Me pēhea te mōhio ki tēnei?
Ko ngā tohu tuatahi o te mate Proteus ka puta i waenga i te 6 me te 18 marama te pakeke . Koinei te wā ka tīmata ai te tauira tipu kore taurite i whakahuatia i mua ake nei. Ka rerekē te tauira o tēnei tipu me tōna kaha i ia tangata, i ia tangata. Ka pā ki tētahi wāhanga o te tinana, tae atu ki ngā wheua, te kiri, ngā whekau, me ngā kiko. Ka tere te whanake o te mate i roto i ngā tau tekau tuatahi o te oranga.
### Ngā huringa o ngā wheua:
Tērā pea ka tipu rerekē ngā wheua i roto i ō ringaringa, ō waewae, tō angaanga, me tō tuaiwi.
- Ka taea e ngā ringa me ngā waewae te tipu ki ngā roa tino rerekē . Whakaarohia he roa ake tētahi ringa i tētahi, he rerekē rānei te roa o ō waewae.
- Ka puta pea te piko nui o te tuaiwi (scoliosis) .
- I roto i te wā, ka kore pea ngā hononga e mahi tika i tēnei tipu rerekē.
### Ngā huringa kiri:
Ka taea e te mate Proteus te whakaputa i ngā tipu rerekē o te kiri.
- I ētahi wāhi, ka mātotoru te kiri, ka ara ake, ka hanga he puku miro e rite ana ki te mata o te roro. Ka kiia tēnei he nevus kiko honohono cerebriform .
- Ka kitea ēnei i ngā kapu o ngā waewae , engari i ētahi wā ka puta ki ngā ringa.
He tino ahurei tēnei momo puku kiri, kāore e kitea i roto i tētahi atu mate hauora.
### Ngā uaua toto me te kiko ngako:
- Tērā pea he tipu rerekē o ō uaua toto, arā, ko ngā kapiripiri toto me ngā uaua toto.
- Ka taea e te kiko ngako te tupu nui rawa, ka nui rawa te ngako e kohia ana ki ngā wāhi pērā i te puku, ngā ringa, me ngā waewae.
- He maha ngā wā, ka puta ake ngā pukupuku ngako (lipomas) ehara i te matepukupuku.
### Ngā raruraru o te pūnaha io:
Ka pāngia hoki ētahi tāngata e te mate Proteus e ngā raruraru ki te pūnaha io.
- Ngā hauātanga hinengaro.
- Ngā mate haurangi (Ngā hopukanga).
- Te ngaronga o te tirohanga.
### Ngā panonitanga o te āhua o te kanohi:
Ka taea e te mate Proteus te whakaputa i ētahi āhuatanga motuhake o te kanohi.
- He mata roa.
- Te āhua nei kei te piko haere ngā kokonga o waho o ngā kanohi.
- He ihu papatahi, he pongaponga whānui.
- He rite ki te mea kua puare tō waha.
He aha ngā raruraru mōrearea ka puta mai i tēnei?
Ko te raruraru tino morearea o te mate Proteus ko te deep vein thrombosis (DVT), he toto totoka i roto i ngā uaua hohonu . He maha ngā wā ka pā te DVT ki ngā uaua hohonu o ngā waewae, o ngā ringa rānei, ka mamae, ka pupuhi hoki.
Ki te haere tēnei DVT mā roto i te toto ki ngā pukahukahu, ka puta he āhuatanga morearea e kiia nei ko te Pulmonary Embolism. Ko te pulmonary embolism te tino take o te mate i roto i te hunga e pāngia ana e te mate Proteus.
He pēhea te whanaketanga o te Mate Proteus? He mea ira mai?
Ko te take o tēnei he panonitanga (whakarerekētanga) i roto i te ira e kiia nei ko te AKT1.. Ka āwhina te ira AKT1 ki te whakahaere i te tipu me te wehenga o te pūtau. Ina whakarerekētia tēnei ira, ka ngaro te kaha o te pūtau ki te whakahaere i tōna tipu. Ka puta te tipu me te wehenga rerekē o te pūtau. Koinei te take o te tipu nui rawa e kitea ana i roto i te mate Proteus.
Ko te mea nui , ehara te mate Proteus i te mate tuku iho. Ka puta tēnei whakarerekētanga ira i muri i te whakatōtōtanga o te kukune, e kiia nei ko te whakarerekētanga tinana . Ka puta noa tēnei whakarerekētanga ira i roto i tētahi pūtau kotahi o te kukune e whanake ana i te tīmatanga o te hapūtanga. I te tipu me te wehewehe o tēnei pūtau kua whakarerekētia, ka puta tēnei whakarerekētanga i roto i ētahi pūtau, ko ētahi kāore. Ka kiia tēnei ko te whakarerekētanga ira mosaic . He rite ki tētahi pikitia i hangaia ki ngā wahi rerekē o ngā tae. Nā te mea ka pā noa te whakarerekētanga ira AKT1 ki ētahi pūtau o te tinana, ka pā noa te mate ki tētahi wāhanga o te tinana.
Me pēhea te tautuhi a ngā tākuta i tēnei?
Ka whakahaerehia e tō tākuta he whakamātautau tinana hei tautuhi i te mate Proteus. Ka whakamahia hoki e rātou he rārangi arowhai motuhake o ngā tohu e pā ana ki te mate. Kia whakaarohia ai e te tākuta tēnei tautuhi, me toru ngā tohu noa e kitea ana. Ko ēnei:
- Te tohatoha o te mosaic : Ko te tikanga tēnei kua horapa ngā tipu puta noa i te tinana. He tipu ētahi wāhanga o te tinana, ko ētahi kāore.
- Te puta noa mai i ētahi wā : Ko te tikanga kāore he tangata kē atu o tō whānau e pāngia ana e ēnei tohu.
- Te ahunga whakamua : Ko te tikanga tēnei, i roto i te wā, kua tino rerekē te āhua o ngā wāhanga tinana e pāngia ana nā te tipu nui rawa atu.
Hei tāpiri atu ki tēnei, ka rapu tō tākuta i ētahi atu tohu motuhake. Hei tātaritanga mō te mate Proteus, me whai tohu motuhake koe mai i ia kāwai kei runga i te rārangi arowhai a te tākuta.
### He aha ngā momo whakamātautau e mahia ana?
Kāore te whakarerekētanga ira e puta ai te mate Proteus i roto i ngā pūtau katoa o te tinana. Nō reira, he uaua pea te whakamātautau ira. Nā te mea kāore pea te whakarerekētanga ira i roto i te tauira toto, he iti noa iho rānei te nui o te kitea.
Heoi, ka taea e ngā tākuta te kite i tēnei ira kua whakarerekētia mā te tango i tētahi tauira iti o tō kiko kua pāngia (biopsy) me te whakamātautau DNA) . Ka whakamahia te DNA mai i taua tauira hei kite i te ira kua whakarerekētia.
He rongoā kei reira mō tēnei? Ka taea te whakaora?
Engari, kāore he rongoā mō te mate Proteus . Ko te arotahi o te maimoatanga he whakahaere i ō tohumate. Me mahi tahi koe me tētahi rōpū tohunga hei āwhina i a koe me ō hiahia hauora takitahi.
- Taote pokanga wheuaHe rongoā mō ngā raruraru o ō wheua. He maha ngā maimoatanga hei whakaiti i te tipu nui o te wheua i roto i ngā ringaringa, ngā waewae, me ngā maihao. Ka taea hoki e rātou te whakatika i ngā raruraru o te tuaiwi me ngā hononga. I mua i tētahi pokanga, ka arotakehia koe e te tākuta toto hei aromatawai i tō mōrearea o te toto totoka.
- Me toro atu pea koe ki tētahi tākuta kiri mō te nui rawa o te hinu kiri me ngā panoni kiri. Tērā pea ētahi raruraru e hiahiatia ana he maimoatanga tonu, he maimoatanga auau hoki. Mō ētahi atu raruraru, ka whai pea tō tākuta i tētahi huarahi "tāria, tirohia". Arā, ka aroturukihia e rātou tō āhua i mua i te tūtohutanga i tētahi maimoatanga motuhake.
Ko ētahi atu kaiwhakarato hauora ka whai wāhi pea ki tō tiaki ko:
- He tohunga rongoā whakaora (Taonga rongoā tinana)
- He tākuta e tohunga ana ki ngā mate manawa (Pulmonologist)
- Kaiwhakaora tinana
- Kaiwhakaora mahi
- He tangata e hanga ana i ngā hu me ngā tautoko waewae motuhake (Pedorthist)
Nō nā tata nei anō i kitea ai e ngā kaipūtaiao te ira e puta ai te mate Proteus, ka ārahi pea tēnei ki ngā whanaketanga nui i roto i te whanaketanga o ngā rongoā hou me ētahi atu maimoatanga.
He ara hei ārai i tēnei?
Kāo, kāore e taea te ārai i te mate Proteus. Nā te mea he mate ira tēnei. Ko te whakarerekētanga ira e hua ai tēnei he mea tūpono i te whanaketanga o te kukune. Ehara i te mea i puta mai i tētahi mea i mua atu, i te wā rānei e hapu ana. Nō reira kaua e manukanuka ki tēnā.
Kei te pēhea te roa o te oranga?
Ko te roanga o te oranga o te tangata e pāngia ana e te mate Proteus e whakawhirinaki ana ki ngā wāhanga o te tinana e pāngia ana me te kaha o te mate. Ka taea e ngā raruraru te whakararu i te ora , ā, he nui ake te tūponotanga ka mate i te mate tonu. Ko ēnei raruraru ka uru atu ki te deep vein thrombosis (DVT), te pulmonary embolism, me te mate pukupuku. Ko te pulmonary embolism te tino take o te mate i roto i te hunga e pāngia ana e te mate Proteus.
I te katoa, tata ki te 25% o te hunga e pāngia ana e te mate Proteus ka mate i mua i te 22 tau te pakeke. Heoi, ko te hunga he ngawari ngā tohu he pai te roa o te oranga me te whai hua o te maimoatanga.
Me pēhea te noho tahi me te Mate Proteus?
He tino whakarihariha, he tino uaua hoki te noho tahi me ngā panonitanga tinana e puta mai ana i te mate Proteus. He mea nui kia ako koe me tō whānau i ngā mea katoa e taea ana mō tēnei mate.Mā te kōrero ki ētahi atu tāngata e pāngia ana e tēnei mate, me te whakarongo ki ō rātou wheako, ka āwhina i a koe kia mōhio kāore koe i te mokemoke, ā, kei reira ētahi e mārama ana ki a koe. Pātai atu ki tō tākuta mō ngā rauemi hei āwhina i a koe ki te whakahaere me te aro atu ki tō āhua.
He wheako whakamataku, he wheako mamae hoki te kitenga kei a koe, kei tāu tamaiti rānei tētahi mate ira onge. He tino uaua pea mēnā ka puta he huringa nui ki te tinana i roto i te mate. Nō reira, he mea nui kia kimihia he tākuta ka taea te tātari tika i te mate Proteus me te whakatū i tētahi rōpū tohunga. Mēnā he maimoatanga tika, he pai te roa o te oranga o te nuinga o te tangata. He mea nui anō hoki kia kimihia he rōpū tāngata ka taea te tautoko i a koe i a koe e anga atu ana ki tēnei tātaritanga uaua.
Kia maumahara ki te mea tino nui (Karere hei kawe ki te kāinga)
- He tino onge te mate Proteus ira, e tohuhia ana e te tipu nui rawa, kore taurite o ētahi wāhanga o te tinana.
- Ehara tēnei i te mea tuku iho . Nā te whakarerekētanga ira matapōkere e puta ana i te wā o te kukune.
- Ka rerekē rawa ngā tohu i ia tangata, i ia tangata.
- Ahakoa kāore he rongoā katoa , he maha ngā maimoatanga hei whakahaere i ngā tohu.
- He mea tino nui kia rapu tautoko mai i tētahi tīma tākuta motuhake , kia mōhio hoki ki ngā āhuatanga o te mate.
- He mea nui kia mōhio ki ngā raruraru pēnei i te deep vein thrombosis (DVT) me te pulmonary embolism (Pulmonary Embolism) hei tiaki i ngā oranga.
- Mena kei te pāngia koe, tō whanaunga rānei e tēnei mate, kaua e wareware ki te kaha e ahu mai ana i te tautoko hinengaro me ngā rōpū tautoko .
Ko tāku tumanako ka whai hua ēnei mōhiohio ki a koe. Mēnā he āwangawanga āu, kaua e wareware ki te rapu tohutohu hauora.
No comments yet. Be the first to share your question or experience below.