I kite koe i tētahi tohu whānau nui, whero pouri, he rite ki te waina i te tinana o tō pēpi i tōna whānautanga? I a tō pēpi e tipu haere ana, he roa ake, he matotoru ake rānei tētahi waewae i tētahi atu? Tērā pea ka kite koe he uaua kua piko. Mēnā kei tō pēpi tētahi, ētahi rānei o ēnei tohu, he mea nui kia mōhio koe ki te mate onge e kōrerohia ana e tātou i tēnei rā, ko te Klippel-Trenaunay Syndrome (KTS). Ahakoa he ahua uaua, kia māmā noa iho.
He aha te Klippel-Trenaunay Syndrome (KTS)?
He tino onge te mate whānautanga o te KTS, ā, ka puta mai i te whānautanga. Tata ki te kotahi i roto i te miriona tāngata puta noa i te ao ka pāngia. Nō reira, ehara i te mea tino noa. E toru ngā raruraru matua ka kitea i roto i te tangata whai mate pēnei.
1. He tohu whānau whero i runga i te kiri: Ka kiia hoki tēnei he "taera waina-pōti" nā te mea he rite ki te tae o tētahi waina iti.
2. Ngā uaua varicose: Koinei te āhua e kīia nei e tātou ko ngā "Varicose veins".
3. Te rahi haere o tētahi ringa, o tētahi waewae rānei i tētahi atu: Tērā pea ka roa ake, ka matotoru ake rānei tētahi waewae i tētahi atu.
Haunga ēnei tohu matua e toru, tera pea ētahi tāngata ka pāngia e ngā raruraru o te pūnaha lymphatic, e āwhina ana ki te pupuri i te taurite o ngā wai i roto i ō tātou tinana.
Ka karangatia tēnei e ngā tākuta i ētahi wā ko te "CLVM." Ko te tikanga ka pā tēnei āhuatanga ki ētahi wāhanga o tō tātou tinana.
- C (Ngā Āputa Toto): Koinei ngā uaua toto tino angiangi e hono ana i ō tātou uaua me ngā uaua toto. Ko te tohu whānau whero i puta mai i ngā huringa o ēnei.
- L (Pūnaha lymphatic): Ko te tikanga he pūnaha lymphatic. He wāhanga o tō tātou pūnaha ārai mate.
- V (Ngā Uaua): Ko te tikanga he uaua. Ko ngā oko toto e kawe ana i te toto ki te ngākau.
- M (Hōngā Kore): Ko te tikanga tēnei kāore te wāhanga i te whanake tika.
I kitea tuatahitia tēnei mate e ngā tākuta Wīwī e rua i te tau 1900. Koia te take i tapaina ai tēnei mate ki tō rāua ingoa.
He aha ngā tohu o te tangata whai KTS?
Kia tirohia ake tātou te pānga o tēnei mate ki ngā oko toto, ki ngā kiko ngohengohe, ki ngā wheua, me ngā oko lymphatic o te tangata whai KTS. Kia mārama ai ki ēnei tohu, tirohia te ripanga i raro nei.
| Tohu | He whakamārama māmā |
|---|---|
| Tae waina-pōti | Koinei pea te tohu tuatahi o te KTS. Ka puta mai i te pupuhi o ngā oko toto iti (ngā capillary) i raro i te kiri. Ka rerekē te tae mai i te māwhero mārama ki te whero-waina pouri. I a koe e pakeke haere ana, ka pouri ake, ka mārama ake rānei tēnei ira. I ētahi wā, ka puta mai he pupuhi iti ki te ira, ka pakaru, ka toto. |
| Ngā uaua varicose | Ka pā pea tēnei āhuatanga ki te nuinga o te hunga whai KTS. Ina puta ēnei raruraru i roto i ngā uaua kei te mata o te kiri, ka kikorangi te tae o ngā uaua o ngā waewae, inā koa i te hope me ngā huha. I ētahi wā, ka pā anō hoki ki ngā uaua e rere ana i roto i te tinana. Mēnā ka puta tēnei, ka tūpono te toto totoka (Deep Vein Thrombosis - DVT). |
| Te tipu rerekē o te ringa, o te waewae rānei | He maha ngā wā, kotahi anake te ringa, te waewae rānei ka nui ake i tētahi atu. Ka tīmata pea tēnei i te wā pēpi. Ko te nuinga o te wā ka pā ki tētahi waewae. Tērā pea he roa ake, he matotoru ake rānei tētahi waewae i tētahi atu. Ka uaua pea te hikoi me te neke. |
| Ngā raruraru o te pūnaha lymphatic | Tērā pea he oko toto lymph tāpiri, he āhua rerekē rānei ō ētahi tāngata. Ki te kore ēnei e mahi tika, ka turuturu te wai lymph, ka pupuhi ngā waewae, ka raru rānei te hope, te pūkahukahu, te puku rānei. |
| Mamae | Tērā pea ka mākūkū, ka mamae rānei ngā uaua. Ka pupuhi, ka mamae hoki ngā waewae i ngā raruraru o te rere o te toto. Waihoki, ka taumaha, ka mamae rānei ngā waewae kua nui haere. |
He aha rawa te take o tēnei āhuatanga?
I te nuinga o te wā, ka puta te KTS i te huringa o tētahi o ō tātou ira. Hei whakamārama, ka puta mai i te whakarerekētanga o te ira e kiia nei ko te PIK3CA.
Ko te mea nui, ehara tēnei i te mea tuku iho mai i te whaea ki te tamaiti. Ka puta noa iho tēnei whakarerekētanga ira, kāore he take. Nō reira, hei mātua, kāore he take e pouri ai koe, e whakapae ai rānei i a koe anō mō tēnei.
I ētahi wā, ko te hunga kāore he huringa ira PIK3CA, he KTS anō hoki tō rātou, nō reira e whakapono ana ngā kairangahau tera pea ko ētahi atu huringa ira te take.
He aha atu ngā raruraru ka puta mai i te KTS?
Ki te kore e whakahaerea tika te KTS, ka puta pea ētahi raruraru, ā, he mea nui kia mōhio ki ēnei.
- Ngā toto totoka: Ka taea e ngā toto totoka (DVT) te hanga i roto i ngā uaua hohonu o ngā waewae. Ko te mōrearea nui ko te mea ki te pakaru tēnei toto totoka ka mau ki roto i te uaua o ngā pukahukahu, ka waiho hei mate morearea (Pulmonary Embolism).
- Ngā mate kiri: Ka pā mai pea ngā mate kitakita e puta ana i raro i te kiri (cellulitis).
- Pupuhi: Ka taea e ngā raruraru o te pūnaha lymphatic te whakaemi i te wai i roto i te tinana, ā, ka pupuhi (Lymphedema).
- Te toto o roto: Ka puta te toto mai i te puku, i ngā whekau, i te pūkahukahu, i roto rānei i ngā wāhine, mai i te pūnaha whakaputa uri.
He tino onge, ka pāngia pea ētahi tāngata whai KTS e ngā hapa whānau e pā ana ki ngā maihao me ngā matimati.
- He maihao tāpiri (Polydactyly)
- Syndactyly (ngā maihao e honoa ana)
Me pēhea te tātaritanga tika a te tākuta i te KTS?
Mā te tākuta e tātaritanga tuatahi te āhua o te pēpi e tirotiro. Mena kei te kitea te iti rawa i te rua o ngā tohu matua e toru i kōrerohia i mua ake nei (ngā tohu whānau, ngā uaua pungawerewere, me ngā peka kua nui haere), e whakapaetia ana he KTS pea. Nā te mea ka kitea ēnei tohu i te whānautanga, he wā ka taea te tātaritanga i mua i te hokinga o te pēpi ki te kāinga i te hōhipera.
Ka tonoa pea e te tākuta ngā whakamātautau maha hei whakaū i tēnei āhuatanga, hei rapu hoki i ngā pānga ki te tinana.
| Whakamātautau | He aha tāu e kite nei i roto i tēnei? |
|---|---|
| Matawai CT, matawai MRI rānei | Tirohia te āhua o ngā kiko ngohengohe me ngā wheua o te tinana, me te whānuitanga o te tipu rerekē. |
| MRA (Angiogram Resonance Aukume) | He momo matawai MRI motuhake tēnei. Ka taea te kite mārama i te āhua o ngā uaua toto me ngā uaua toto. |
| Te Whakamātautau Doppler | Tirohia te rere o te toto i roto i ngā uaua me ngā uaua toto, ā, tirohia mēnā he aukati, he rerenga whakamuri rānei kei hea. |
He aha ngā maimoatanga mō te KTS?
Kāore he rongoā mō te KTS. Heoi, he maha ngā maimoatanga hei āwhina i te tangata ki te whakahaere i ō rātou tohu me ngā raruraru, me te noho i te oranga noa. Ko te maimoatanga e whakawhirinaki ana ki ngā tohu o te tangata takitahi.
| Tikanga maimoatanga | Ka ahatia? |
|---|---|
| Ngā rongoā whakaheke toto (Ngā rongoā ārai toto) | Ka āwhina tēnei rongoā ki te whakaiti i te mōrearea o te toto totoka. |
| Te rongoā Sirolimus | Ka whakaroa, ka aukati rānei tēnei rongoā i te tipu o ngā oko toto rerekē, ā, ka whakaitihia ngā tohu me ngā raruraru. |
| Tōkena Kōpeketanga | Ka āwhina ēnei ki te whakaiti i te pupuhi me te mamae o ngā waewae, me te whakaiti i te mōrearea o te toto totoka. Ka āwhina i te rere o te toto mai i ngā waewae ki te ngākau. |
| Ngā hiki hu | Mena kāore ō waewae i te rite te roa, mā te tāpiri i tētahi wāhanga teitei ake ki tētahi hu ka māmā ake te hikoi. Ka āwhina anō hoki tēnei ki te whakaiti i te mōrearea o te scoliosis. |
| Te rongoā taiaho | Ka whakamahia tēnei maimoatanga hei whakamārama i te tae o te tohu whānau 'waine pārera' i te kiri. |
| Te whakaora i te kiriuhi | Ka werohia he wai motuhake ki roto i ngā uaua raruraru, ka whakakorengia, ka hiritia hoki. He maimoatanga whai hua tēnei mō ngā uaua varicose. |
| Pokanga | Ka taea te mahi pokanga hei whakatika i ngā raruraru nui o te uaua, hei whakataurite i te roa o te waewae, hei whakaiti rānei i te rahi o te ringa/waewae kua nui haere mā te tango i te kiko taikaha. |
He aha ētahi mea hei tino tūpato māu ina noho tahi ana koe me te KTS?
I te wā e noho tahi ana koe me te KTS, he mea tino nui kia mārama koe ki tō tinana, me te tiaki hoki i ētahi mea.
- Tiakina tō kiri: Mā te pupuri i tō kiri kia ma, kia kore hoki e whara, ka whakaiti i te tūponotanga o ngā mate kiri.
- Kia kaha tonu te mahi: Kaua e noho roa i te tūranga kotahi. Mā te whakakori tinana me te hikoi auau ka whakaiti i te tūponotanga o te toto totoka.
- Mauria ngā kākahu pēhi e ai ki ngā tohutohu a tō tākuta: Mena kua tohua e tō tākuta, mauria tonutia ngā tōkena motuhake, ngā kākahu rānei hei whakaiti i te pupuhi.
- Āraia ētahi tikanga ārai whānau: Kōrero ki tō tākuta mō te karo i ngā mea pēnei i ngā pire ārai whānau kei roto te homoni estrogen, nā te mea ka piki ake te tūponotanga o te toto totoka.
- I te wā e hapu ana, i mua hoki i te pokanga: I ēnei wā, me tango pea koe i ngā rongoā whakangawari toto hei ārai i te toto e pupuhi ana, nā te mea he nui ake te tūponotanga o te toto e pupuhi ana. Kōrero ki tō tākuta mō tēnei, kia whiwhi ai koe i ngā tohutohu.
Āhea ahau me toro atu ki te tākuta? He aha ngā wā hei haere ki te ETU?
He mea nui kia tirotirohia te tangata whai KTS i ia wā, i ia wā, puta noa i tōna oranga. Koinei te wā ka taea te aroturuki i te āhua, ka kitea te whai huatanga o te maimoatanga, ā, ka taea te mahi i ngā huringa e tika ana.
Heoi, i ētahi wā, me haere pea koe ki te hōhipera i roto i tētahi āhuatanga ohorere. Kia tūpato ki ēnei tohu.
Koinei ngā āhuatanga e hiahia ana koe ki te haere ki te ETU (Emergency Treatment Unit) i te wā tere:
* Ki te kite koe i ngā tohu o te toto totoka: Ki te mamae ohorere tetahi waewae, ka pupuhi, ka whero, ā, ka mahana ki te pā atu, tera pea he toto toto hohonu (DVT).
* Mena kei a koe ngā tohu o te toto totoka i roto i ngā pukahukahu: Te mamae ohorere o te uma, te uaua ki te manawa, te tere o te manawa, te maremare toto rānei, tera pea he pulmonary embolism. He āhuatanga ohorere tēnei.
* Mēnā he toto nui: Mēnā he toto kāore e taea te whakahaere mai i tētahi wāhanga o te tinana.
Ki te kite koe i tētahi o ēnei tohu, kaua e whakaroa, engari me haere tonu ki te Tari Ohotata (ETU) o te hōhipera tata.
He mate uaua te KTS, nō reira he maha āu pātai. I ia wā ka kite koe i tō tākuta, whakarongo ki ngā mea katoa kei roto i tō hinengaro. Kaua e whakaaro, "He raruraru noa iho tēnei kāore e tika ana kia arohia e au." He pai ake te tuwhera me te pono ki tō tākuta.
Karere Tangohia ki te Kāinga
- He mate whānau onge te Klippel-Trenaunay Syndrome (KTS) ehara i te he o ngā mātua.
- Ko ngā tohu matua e toru: he tohu whānau whero pouri (he paru waina port), he uaua varicose, me te nui ake o tetahi ringa, o tetahi waewae rānei i tetahi atu.
- Ahakoa kāore e taea te whakaora katoa i tēnei mate, he maha ngā maimoatanga hei āwhina i a koe ki te whakahaere i ō tohumate me te noho i tētahi oranga tino pai.
- Ko ngā raruraru nui hei tūpato ko ngā toto totoka (DVT, Pulmonary Embolism) me te toto nui. Kia tūpato tonu ki ngā tohu whakatūpato o ēnei.
- He mea tino nui kia noho whakapā atu koe ki tō tākuta i te roanga o tō oranga, me te haere ki ngā tirotiro hauora i ia wā.
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