Ehlers Danlos Syndrome

Ko te syndrome Ehlers-Danlos he rōpū mate whakaheke i ngā whatu hono – te kiri, ngā hononga me ngā pakitara o ngā oko toto. He whakaranu rarū o ngā pūmua me ētahi atu mea te whatu hono, ā, e whakawhiwhia ana te kaha me te ngawari ki ngā hanganga o roto i roto i tō tinana. Ko te nuinga o te hunga e pangia ana e te syndrome Ehlers-Danlos he hononga ngawari rawa atu, me te kiri ngawari, pakaru. Ka waiho hei raruraru tēnei mēnā he whara kei a koe e hiahia ana ki te tahi, no te mea kāore te kiri e kaha ki te pupuri i a rātou. Ko tetahi āhua kino o te mate, ko te syndrome Ehlers-Danlos ngā oko toto, ka taea te pakaru o ngā pakitara o ō oko toto, o ō whekau, o ō kopu. Nō te mea ka taea e te syndrome Ehlers-Danlos ngā oko toto te whakaeke i ngā raruraru nui i te whakahaputanga, ka hiahia pea koe ki te kōrero ki tētahi kaitohutohu ira tangata i mua i te timatanga o tētahi whānau.

He maha ngā momo o te mate Ehlers-Danlos, engari ko ngā tohu me ngā pūāhua tino noa e whai ake nei: Ngā hononga tino pūngao. Nō te mea he ngoikore te kōpū hono e pupuri ana i ngā hononga, ka taea e ō hononga te neke atu i te tawhiti atu i te āhua noa o te nekehanga. He mea noa te mamae o te hononga me te wehewehe. Te kiri ngākau. Ka taea e te kōpū hono ngoikore te totoro atu i tō kiri atu i te noa. Ka taea pea e koe te kukume i tetahi wahi o te kiri atu i tō kikokiko, engari ka hoki mai ki tō wahi i te wā e tukua atu ai. Ka rongo pea tō kiri he ngawari rawa, he ngohengohe. Te kiri pakaru. Kaore e ora pai te kiri i pakaru. Hei tauira, ka pakaru ngā aho e whakamahia ana hei whakakapi i te whara, ka waiho he tohu nui. Ka rite pea enei tohu ki te angiangi, ki te kōkō. Ka rereke te kaha o te tohu mai i te tangata ki te tangata, ā, kei runga i te momo mate Ehlers-Danlos kei a koe. Ko te momo tino noa ko te mate Ehlers-Danlos hypermobile. Ko te hunga he mate Ehlers-Danlos vascular, he āhua kanohi motuhake kei a rātou, he ihu angiangi, he ngutu o runga angiangi, he turi iti, me ngā kanohi matotoru. He kiri angiangi, mārama hoki kei a rātou e pēhi ngāwari ana. I ngā tāngata kiri mā, he tino kitea ngā oko toto i raro i te kiri. Ka taea e te mate Ehlers-Danlos vascular te whakawaiho i te uaua nui o tō ngākau (aorta), me ngā uaua ki ētahi atu wāhanga o tō tinana. Ka mate pea te pakaru o tetahi o ēnei uaua toto nui. Ka taea hoki e te momo vascular te whakawaiho i ngā pakitara o te kopu, o te pūkahukahu nui – ā, ka pakaru pea aua mea.

Kaore he uauatanga

Ko ngā momo rerekē o te mate Ehlers-Danlos e hono ana ki ngā take tuku iho rerekē, ko ētahi o aua take e tukuna ana i te whānau, ā, ka tukuna atu e te mātua ki te tamaiti. Ki te pēnei koe i te momo tino noa, arā, te mate hypermobile Ehlers-Danlos, he 50% te tūponotanga ka tukuna e koe te ira ki ia tamaiti.

Kaore he uauatanga

Ko ngā raruraru e puta ana ka whakawhirinaki ki ngā momo tohu me ngā tohu e pā ana ki a koe. Hei tauira, ko ngā hononga ngākau maha rawa ka taea te arahi ki te pakaru o ngā hononga me te mate ngā hononga i te timatanga o te ora. Ka taea e te kiri pakaru te whanake i te tohu tohu nui. Ko te hunga he mate Ehlers-Danlos toto, kei te tūpono ratou ki te pakaru o ngā oko toto nui, he maha ngā mate. Ko ētahi o ngā whekau, pēnei i te kopu me ngā whekau, ka pakaru hoki. Ka taea e te hapu te whakapiki ake i te tūpono o te pakaru i te kopu.

Mēnā he hītori whaiaro tōu, te whānau rānei, mō te mate Ehlers-Danlos, ā, kei te whakaaro koe ki te whakapapa, he pai pea te kōrero ki tetahi kaitohutohu irahiko—he tohunga hauora kua whakangungua ki te aromatawai i te tūponotanga o ngā mate ka riro mai i ngā mātua. Ka taea e te tohutohu irahiko te āwhina i a koe ki te mārama ki te tauira tuku o te momo mate Ehlers-Danlos e pā ana ki a koe, me ngā tūponotanga e pā ana ki ō tamariki.

Kaore he uauatanga

Kaore he uauatanga

Kaore he uauatanga