He ngawari te maru o ō uaua? He tino kikokore tō kiri? Kia tūpato tātou ki te mate kino o te Vascular Ehlers-Danlos Syndrome (vEDS)!

Ahakoa he puku iti, ka kitea tonutia he kikorangi nui i tō tinana? He kikokore rawa rānei tō kiri, ā, ka kitea ō uaua? He tohu ēnei i ētahi wā mō tētahi mate onge engari he tino kino, ahakoa kāore tātou e aro nui ki aua mate. I tēnei rā ka kōrero tātou mō tētahi mate pēnei, he mate e ngoikore ai ngā kiko honohono o te tinana, inā koa ko ngā uaua toto. Ko te ingoa o tēnei ko te Vascular Ehlers-Danlos Syndrome , (vEDS) rānei. Ahakoa he ahua uaua tēnei, kia mārama noa tātou.

He aha te mate Ehlers-Danlos (EDS)? He morearea te momo mate toto?

Ki te whakarapopoto, ko te Ehlers-Danlos Syndrome (EDS) he rōpū mate ira e pā ana ki ngā kiko honohono o roto i ō tātou tinana. Tērā pea kei te whakaaro koe he aha ngā kiko honohono. Ko ēnei ngā mea e hono ana i ō tātou tinana, e whakakaha ana hoki i a rātou. Hei tauira, ko ngā mea pēnei i ngā hononga, ngā uaua, me te kiriuhi. Ko ēnei ngā mea e whakakaha ana i te āhua, te kaha, me te ngāwari o ō tātou tinana.

E 13 pea ngā momo EDS. Ko te EDS toto (vEDS) e kōrerohia ana e tātou i tēnei rā ko te momo tuawhā (`(Momo IV)`). Koinei te mea tino onge, ā, ko te mea tino kino rawa atu o ēnei momo EDS. He tino ngoikore ngā oko toto o te hunga whai mate pēnei, arā, ko ngā uaua e kawe ana i te toto, me ngā whekau o roto i roto (`(ngā whekau o roto)`) he tino ngoikore, ā, ka ngāwari te pakaru. He rite ki te karāhe angiangi, ka taea te pakaru ahakoa ki te mea iti rawa.

Ko wai ka pāngia e tēnei mate? He pēhea te noa o tōna pānga?

Nā te mea he mate ira tēnei, he maha ngā wā ka tukuna iho i tētahi o ngā mātua, i ngā mātua e rua rānei. Ko te tikanga he mate tuku iho. Heoi, i ētahi wā, ahakoa kāore anō kia pāngia tētahi o te whānau e tēnei mate, ka pāngia pea tētahi e te mate mā te whakarerekētanga ohorere o tēnei ira.

He mate onge te EDS. Tata ki te kotahi i roto i te 5,000 tāngata ka pāngia. Whakaarohia te onge o tēnei momo EDS (vEDS). Tata ki te kotahi i roto i te 200,000, 250,000 rānei tāngata ka pāngia. Nō reira, ehara i te mea miharo te kore mōhio o te tini o te tangata ki tēnei mate.

He aha te pānga o tēnei ki te tinana?

Ko te Mate Ā-Iwi Ehlers-Danlos (vEDS) he mate e ngaro ai te kaha me te ngāwari o ngā kiko o te tinana, inā koa ko ngā uaua toto (ngā uaua toto) me ngā whekau o roto . Ka ngāwari te maru o te tangata, ā, ka nui ake te tūponotanga o te toto o roto mai i ngā whara.

Whakaarohia, ehara i te mea nui te pupuhi iti i te upoko mō te tangata noa. Engari mō te tangata whai mate pēnei, ka pakaru pea te uaua toto i roto, ka pakaru rānei te pakitara (te tapahi uaua). He rite ki te ngongo rapa tawhito, e rite ana ki te pakaru i te pēhanga iti noa iho.

He aha ngā tohu o te EDS o ngā Toto?

Ahakoa he rerekē ngā tohu o tēnei mate i ia tangata, tera ētahi tohu noa ka kitea. Me titiro tātou ki ēnei tohu:

• Ngā huringa kiri:
• Ka tino angiangi, ka mārama, ka ngawari te kiri, ka kitea mārama ai ngā uaua o te tinana.
• Ko te kiri i ētahi wāhi, inā koa ko ngā ringa me ngā waewae, te āhua nei kua tere ake te koroheketanga i ētahi atu.

• Ngā āhuatanga motuhake o te mata:
• Tērā pea ka tino kikokore ngā ngutu me te ihu o te hunga whai mate nei .
• Kauae iti .
• He nunui ngā kanohi, ā, he paku wehe kē .
• He iti noa iho ngā kamo o ētahi tāngata, kāore rawa rānei .
• He iti rawa ngā pū taringa, he tata kore rānei . Kei tawhiti paku ngā taringa e rua i te māhunga, ā, tera pea te āhua nei kei te pūwero whakamua.

• Ngā raruraru o te pūnaha tohanga toto:
• Ka ngawari te maru o te tinana . Ahakoa ka pāngia koe e tetahi mea iti, ka puta tonu he ira kikorangi nunui.
• Ka puta pea ngā uaua varicose i te wā taitamariki ake i te wā noa.
• He mea noa te toto toto tiketike (te toto toto tiketike) me ngā raruraru o te takirere o te ngakau (hei tauira, te mitral valve prolapse ).
• He nui ake te mōrearea o ngā whara uaua. Kei roto i tēnei ko ngā mea pēnei i te tapahi uaua . Ka taea e ēnei te arahi ki ngā aneurysms kino (te ngoikore o ngā pakitara o ngā uaua toto me te pupuhi), te pakaru rānei.

• Ngā ngoikoretanga o ngā whekau o roto:
• Tērā pea ka puta ngā raruraru mōrearea, pērā i te hinganga o te pukahukahu (pneumothorax) me te pakaru o ngā whekau o roto, ka nui haere te toto.

• Ngā huringa angaanga:
• Tērā pea ka kitea he uma totohu (pectus excavatum).
• Tērā pea he poto ake i te mea noa.

He aha i puta ai tēnei āhuatanga? He aha te take?

Kua kōrero kē tātou he mate ira tēnei. Ko te tikanga ka puta mai i te whakarerekētanga ira (`(whakarerekētanga ira)`) i roto i te ira i roto i tō tātou DNA . Whakaarohia, he rite tō tātou DNA ki tētahi pukapuka tohutohu e hanga ana, e whakahaere ana hoki i te tinana. Ka mahi ā tātou pūtau me ā tātou whekau i runga anō i tēnei pukapuka tohutohu. He rite te whakarerekētanga ira ki tētahi hapa i roto i tēnei pukapuka tohutohu. Engari ka whai tonu te tinana i taua tohutohu hē.

Ko te Mate Ā-Iwi Ehlers-Danlos (vEDS) ka puta mai i te whakarerekētanga ira i roto i te ira e hanga ana i te pūmua e kiia nei ko te collagen III . I te nuinga o te wā, ka whakamahia e ō tātou tinana tēnei collagen III hei whakapakari i ētahi kiko me ngā hanganga. Engari nā taua whakarerekētanga ira, kāore te tinana e hanga i te collagen III i te nui, he hapa rānei te collagen III e hangaia ana. Nō reira, kāore e hoatu ki ngā kiko te kaha e hiahiatia ana.

Nā te mea he mate tuku iho, ka taea e te tangata whai mate nei te tuku atu ki ā rātou tamariki.Mena kei tētahi o ngā mātua te mate, e 50% te tūponotanga ka riro i te tamaiti te mate i ia hāputanga. Mena kei ngā mātua e rua te mate, e 100% te tūponotanga ka riro i te tamaiti te mate.

He mate hopuhopu tēnei?

Kāo. Ehara tēnei i te mate e taea te horapa mai i tētahi tangata ki tētahi atu. He mate tēnei e tukuna katoatia ana mā roto i ngā ira.

Me pēhea te tautuhi i tēnei mate?

Tērā pea ka whakapae te tākuta kei te pāngia koe e te mate Vascular Ehlers-Danlos (vEDS) i runga i tō hītori hauora, whakamātautau tinana, tohumate, me te mea kei roto i tō whānau te mate. Kia ara ake taua whakapae, ka mahia he whakamātautau ira hei whakaū, hei whakakore rānei i te tūponotanga. Nā te mea e rua ngā whakarerekētanga ira matua (kua tautuhia i tēnei wā) e puta ai te mate, ko te whakamātautau ira anake te huarahi hei whakatau i te mate.

He aha ngā momo whakamātautau e mahia ana?

Nā te mea he tino onge tēnei mate, ka whakahaerehia pea e ngā tākuta ētahi atu whakamātautau i mua i te whakamātautau ira. Hei tauira, ka whakahaerehia pea e rātou he echocardiogram (he matawai i te ngākau) he matawai CT rānei. Ka mahia tuatahitia ēnei whakamātautau hei whakakore i ētahi atu mate toto ka puta ai te toto nui, te ngawari rānei o te maru. Heoi, ko te whakamātautau ira anake ka taea te whakatau tika mēnā kei a koe te Vascular Ehlers-Danlos Syndrome (vEDS).

He aha ngā maimoatanga? Ka taea te whakaora?

Ehara te EDS toto i te mate e taea te rongoā. He mate ira, arā, ka roa te ora. Nā te mea kāore e taea te rongoā, ka arotahi ngā tākuta ki te whakahaere i ngā tohu me te whakaiti i ōna pānga.

He aha te momo rongoā/maimoatanga e whakamahia ana?

Ko te hunga e pāngia ana e te mate Ehlers-Danlos vascular, he nui ake te mōrearea ki te whakawhanake i ngā aneurysms (ngā oko toto pupuhi) me te toto kino o roto nā te pakaru o ngā oko toto. Nō reira, ki te pāngia koe e tēnei mate, me tirotirohia koe e te hauora kia kitea ai he aneurysms. I ētahi wā, ka hiahiatia pea he pokanga hei whakatika i ngā whara o roto, i ngā aneurysms rānei.

Ka taea hoki e tēnei āhuatanga te whakararu i te ora i te wā e hapū ana, pērā i te pakaru o te kōpū, te toto nui rānei.

Ko tō tākuta te tangata pai rawa atu hei kōrero atu māu mō ngā rongoā, ngā maimoatanga, me ngā pokanga e hiahiatia ana e koe. Ka taea e ia te whakamārama i ngā mea katoa i runga i tō āhua, tō papamuri whaiaro, me ngā taipitopito o te tiaki e hiahiatia ana e koe.

He raruraru kei roto i te maimoatanga?

Nā te ngoikore rawa o ō kiko nā tēnei mate, he nui ake te mōrearea o te toto . Waihoki, he uaua pea te whakaora i muri i te pokanga, engari nā te ngoikore o aua kiko tēnei. Ka taea e tō tākuta te whakamārama pai i ngā pānga taha me ngā mōrearea ka pā ki a koe.

Me pēhea taku tiaki i ahau anō/te whakahaere i ngā tohumate?

He mate uaua te EDS o ngā uaua toto e hiahia ana kia aroturukitia tata e te hauora me te toro atu ki ngā tākuta . He tino uaua rawa, kāore e taea e koe te rongoā, te whakahaere rānei i a koe anō me te kore he āwhina a te tākuta. Nō reira, he mea tino nui kia whai i ngā tohutohu a tō tākuta.

He ara hei ārai i tēnei?

Nā te mea he mate ira te Vascular EDS, kāore he huarahi hei ārai, hei whakaiti rānei i te tūponotanga o te whanaketanga. Me kōrero te hunga whai mate nei ki tā rātou tākuta mō te tohutohu ira mēnā kei te whakaaro rātou kia hapu, kia whānau tamariki rānei. Mā tēnei ka āwhina i a rātou ki te mārama ki ngā mea ka tumanakohia mēnā ka riro mai i tā rātou tamaiti te mate.

He aha ngā mea ka taea e au te tumanako mēnā kei a au tēnei mate? He aha te tirohanga mō te āhua?

Ko te hunga whai EDS toto-ā-roto he nui ake te mōrearea ki ngā raruraru me ngā raruraru e pā ana ki te toto, ki te ngoikore rānei o ngā kiko me ngā whekau o roto.

Ko te nuinga o te hunga whai mate nei ka pāngia e te kotahi pea te raruraru nui i te 20 o ō rātou tau. I te 40 o ō rātou tau , ko te mōrearea o te whakawhanake i ngā raruraru morearea ko te 80% . E whakaatu ana ngā tatauranga tata ki te haurua o te hunga whai mate nei ka ora tae noa ki te 48 tau te pakeke .

Kaua e wehi ki te whakarongo ki tēnei. Nā te mea kei te puta ake ngā huarahi hou hei whakahaere i ēnei āhuatanga, ā, ka taea e te tangata te noho ora pai ake i tō mua.

Kia pēhea te roa o tēnei āhuatanga?

Ko te EDS o ngā uaua toto he mate e kitea ana mai i te whānautanga mai, ā, ka mau tonu mō te wā katoa o te oranga.

Me pēhea taku tiaki i ahau anō?

Me toro atu te hunga whai EDS toto ki te tākuta i ia wā, i ia wā, hei aroturuki i tō rātou āhua, hei tirotiro hoki mō ngā raruraru hou.

Ā, hoki,

• Me karo koe i ngā kēmu me ngā mahi morearea .
• Me karo koe i te hiki i ngā taumaha , i ētahi atu mahi rānei e nui ai te mōrearea o te whara.
• He mea whakaaro nui anō hoki te karo i te pokanga whiriwhiri nā te mea ka nui ake te mōrearea o te toto nui me ngā whara o roto.

Āhea ahau me toro atu ki te tākuta? / Āhea ahau me rapu maimoatanga ohorere?

Tirohia tō tākuta i ngā wā katoa e ai ki ngā taunakitanga. Māna anō hoki koe e kī atu āhea koe me waea atu, me te wā rānei me kite koe i tō tākuta, me te mea ka puta he tohumate ki a koe.

I roto i tētahi āhuatanga ohorere, ko tōna tikanga:

• Mena kei a koe tēnei āhuatanga, me rapu tonu koe i te awhina hauora ohorere mena ka pāngia koe e te mamae nui, kāore he take e kitea ana, inā koa ki te uma, ki te puku rānei .
• Waihoki, ki te mea he patunga o waho tōu e toto nui ana, e maringi ana rānei , me rapu awhina hauora tonu.

Karere Whakamutunga mō te Tango ki te Kāinga

He pono ko te Mate Vascular Ehlers-Danlos (vEDS) he mate ira matatini. Me aro turuki me te tiaki hauora. Tērā pea ka mataku koe i tēnei, engari kia mahara nā te whanaketanga o te rongoā me te māramatanga ki te mate, ka taea e te hunga whai mate te ora roa ake me te ora pai ake i ngā tau kua hipa. Nō reira, he mea nui kia whai i ngā tohutohu a tō tākuta me te tiaki i tō hauora. Mēnā he pātai āu, he pātai rānei a tētahi e mōhio ana koe mō tēnei, kaua e mangere ki te kōrero ki tētahi tākuta.

` te mate vascular ehlers-danlos, veds, te mate ehlers-danlos, eds, mate ira, kiko honohono, uaua pakarukaru, marō ngāwari, mate kiri, mate ira, uaua toto