He mamae tonu tō kaki me tō tuara? Tērā pea ko te Klippel-Feil Syndrome (KFS)!

He uaua ki a koe te huri i tō kaki i ētahi wā? He poto rānei tō kaki? Kua kite pea koe i tētahi panonitanga ōrite i te kaki o tāu tamaiti. Ahakoa he maha ngā take mō tēnei, i tēnei rā ka kōrero tātou mō tētahi mate onge engari he mea nui e kiia nei ko te Klippel-Feil Syndrome (KFS). Kaua e manukanuka, ka māmā noa iho.

Na, he aha te Klippel-Feil Syndrome (KFS)?

He māmā noa iho, ko te Klippel-Feil Syndrome (KFS) he āhuatanga e honoa ai ngā tuaiwi e rua, neke atu rānei o te kaki, o ngā hononga tuaiwi rānei, kia kotahi ai te wheua. He āhuatanga whānau mai tēnei. I te nuinga o te wā, he āputa iti kei waenganui i ngā tuaiwi o te kaki (e kiia ana ko '(cervical vertebrae)'), e kī ana i ngā wāhanga rite ki te tiēre e kiia nei ko '(intervertebral discs)'. Koinei ngā mea e āhei ai tātou ki te huri ngāwari i tō tātou kaki ki mua, ki muri. Heoi, i roto i te tangata whai KFS, ka honoa ēnei tuaiwi ki tetahi ki tetahi, ka taea te whakawhāiti i te nekehanga o te kaki.

E 33 ngā tuaiwi o tō tātou tuaiwi. Kei te kaki (C1 ki te C7) ngā tuaiwi e 7 o runga. I roto i te KFS, ko ngā tuaiwi e rua e pāngia nuitia ana ko te C2 me te C3. Heoi, i ētahi wā ka pā te mate ki ētahi atu tuaiwi o te tuaiwi i raro i te kaki.

Ko te ingoa o te mate ko te Klippel-Feil Syndrome, i ahu mai i ngā tākuta tokorua i kitea tuatahitia ai.

E toru ngā āhuatanga matua o KFS (tērā pea kotahi, e rua, katoa rānei, kāore rānei i te katoa):

• He uaua ki te huri i te kaki nā te piri o ngā tuaiwi o te kaki.
• Te āhua o te kaki poto.
• Ko te raina makawe, kei muri o te mahunga, kei raro iho i te tikanga.

Kāore tēnei mate e pā ki te kaki anake. I ētahi wā ka pā hoki ki te ngākau, ki ngā pukahukahu, ki ngā whatukuhu, ki te waha, ki ngā kanohi, ki ngā taringa, ki ngā uaua, ki ngā io, ki te taurakira me ētahi atu wheua.

He pehea te nuinga o te mate Klippel-Feil Syndrome (KFS)?

He mate tino onge te KFS. Tata ki te kotahi i roto i te 40,000 ki te 42,000 pēpi hou puta noa i te ao ka pāngia. E kiia ana hoki he paku noa ake te kitea i roto i ngā kōtiro.

Me pēhea taku mōhio mēnā kei taku tamaiti te mate Klippel-Feil Syndrome (KFS)?

I ētahi wā, i runga i te kaha o te mate, ka kitea i te wā o te matawai ultrasound i te toru marama tuatahi o te hapūtanga. Mēnā kāore he tohu e kitea ana i te whānautanga, i te wā pēpi, i te wā tamarikitanga rānei, ka kitea pea i te pakeketanga, i muri mai rānei. Heoi, i runga i te whānuitanga o ngā tohu me ētahi atu raruraru ka pā mai ki tēnei mate, he onge te kitea tae noa ki muri mai.

He aha nga tohu o te Klippel-Feil Syndrome (KFS)?

He mea whakamiharo, ko ētahi tāngata whai KFS kāore he tohu o te mate, he iti noa iho rānei ngā tohu. Heoi, he maha ngā tāngata ka pāngia e ngā tohu.Ahakoa he tino ngawari te pānga o ēnei ki ētahi tāngata, ka pā kino pea ki ētahi atu. Ko te tikanga he rerekē ngā tohu i waenga i te tangata me te tangata.

Koinei ngā tohu e kitea pinepine ana:

• Te uaua ki te huri i te kaki: Koinei te tohu tinana tino kitea. Ka puta mai nā te mea kua piri tetahi, ētahi rānei o ngā tuaiwi o te kaki.
• Ko te raina makawe, kei muri o te upoko, i raro.
• Te āhua o te kaki poto.
• Ngā rerekētanga o te rahi me te āhua o ngā taha o te mata.
• Te kore pumau o ngā tuaiwi i te kaki o runga, e hono ana ki te angaanga. He tino morearea tēnei, inā koa mēnā ka whara koe i tētahi aituā, i tētahi aituā motuka, i ngā hākinakina rānei pērā i te whutupōro, te whutupaoro rānei.
• Scoliosis: Ka kitea tēnei i waenga i te 30 me te 50 ōrau o ngā take.
• Te mamae o te upoko.
• Turi: Tērā pea ka pāngia e tēnei te 30 ōrau o te tangata.
• Te uaua ki te huri i te tuara o runga.
• Te mamae o te io e horapa ana ki ngā ringa, ki ngā waewae rānei.
• Te mamae o ngā uaua i te kaki me/ranei te tuara.
• Te kino ki ngā io o te kaki, o te tuara rānei.
• Te whakatōtōtanga o te tuaiwi: Ka taea e tēnei te kino ki te taurakira.
• Mate whatukuhu: Tērā pea ka pāngia e tēnei te 30 ōrau o te tangata.

Hei tāpiri, tera pea ka puta ake ētahi atu raruraru:

• Te ngoikore o te whakarongo, te turi rānei.
• He waha ngatata, he āhua rerekē rānei o te waha.
• Ngā āhuatanga rerekē o te pūnaha whakaputa uri, te pūnaha mimi, te ngākau, ngā pukahukahu, ngā āhua rerekē o ngā rara, ngā āhua rerekē o ngā peka.
• Te ngoikore o ngā hononga i te tihi o te kaki e hono ana i te angaanga. Ka taea e tēnei te pēhi i te taurakira me te kino i ngā io ina neke te kaki.

He aha te take o te Klippel-Feil Syndrome (KFS)?

Kāore anō kia tino mārama ngā kairangahau ki te tino take o te KFS. I te nuinga o te wā, ka kiia he mea tūpono noa iho. Arā, ka puta pea me te kore he hītori whānau mō te mate, me te kore rānei he take ira mārama.

Heoi, i ētahi wā, ka puta pea tēnei āhuatanga i ngā huringa (ngā whakarerekētanga ira) i roto i tētahi, neke atu rānei o ngā ira e whai wāhi ana ki te whanaketanga o te wheua me te tuaiwi.

Ka puta tahi pea te KFS me ētahi atu mate hauora, hei pānga taha rānei nō tētahi atu mate whānau. Ka puta te KFS hei pānga taha nō tētahi atu mate, nā ngā huringa (`(ngā whakarerekētanga)`) o ngā ira e pā ana ki aua mate.

Ko ētahi o ngā āhuatanga hauora e pā ana ki te KFS ko:

• Ka pā mai pea ngā raruraru ki te pūnaha io matua me ētahi atu raruraru (`(fetal alcohol syndrome)` i te inu waipiro i te wā e hapū ana).
• He āhuatanga e whanake rerekē ana ngā kanohi, ngā taringa, me te tuaiwi (`(Goldenhar syndrome)`).
• Te whanaketanga rerekē o te wheua pakihiwi (`(Sprengel deformity)`).
• Ngā rerekētanga o te nekehanga o ngā kanohi (`(Duane syndrome)`).
• Te ngaro o tētahi, o ngā whatukuhu e rua rānei (renal agenesis).
• He āhuatanga e whanake rerekē ana ngā kanohi, ngā taringa, me ngā tuaiwi o te kaki (`(Wildervanck syndrome)`).
• Ngā āhuatanga rerekē o te pūnaha io matua (hei tauira, ngā āhuatanga pēnei i te Chiari malformation, spina bifida, me te syringomyelia).

He mea tuku iho a Klippel-Feil Syndrome (KFS)?

I te nuinga o te wā, ehara te KFS i te tuku iho. Heoi, e ai ki te kōrero i mua ake nei, i ētahi wā, ka puta te mate i ngā huringa (`(ngā whakarerekētanga)`) i roto i tētahi, i ētahi atu rānei o ngā ira e toru kua tautuhia. Mena kei te noho tētahi take ira pēnei, ka taea hoki te tuku iho i te KFS.

He pehea te mate o Klippel-Feil Syndrome (KFS)?

Ka tātaritatia te KFS e te tākuta i runga i ō tohu, i te whakamātautau haumanu, me ngā whakamātautau whakaahua. I te nuinga o te wā ka tātaritatia te mate i te tamarikitanga. I ētahi wā, ka taea te tātaritatia i te wā e whānau ana te tamaiti i roto i te kōpū.

Ka pātai tō tākuta mō tō hītori hauora me tō hītori whānau. Kātahi ka tirotirohia e rātou tō tinana. I tēnei whakamātautau:

• Tō mata, tō kaki (kia kitea ai mēnā he poto), te toenga o tō tuaiwi, me tō raina makawe (kia kitea ai mēnā kei raro i te tuarā o tō mahunga).
• Ka rapua e rātou ngā tohu o te pēhanga o te io o te kaki (radiculopathy) te pakaru rānei o te taurakira (myelopathy).
• Ka whakamātautau i ngā urupare e whakahaerehia ana e te taurakira me ētahi atu io.
• Ka tirotirohia e rātou tō hikoi.
• Ka whakarongo rātou ki te uma me te puku, ka pā atu ki ō rātou ringa.

He aha ngā whakamātautau e mahia ana hei tautuhi i tēnei mate?

Kāore he whakamātautau taiwhanga motuhake hei tātaritanga i te KFS. Heoi, ki te mea he maha ngā tohu kei a koe, ka tono pea tō tākuta i ngā whakamātautau toto hei whakakore i ētahi atu mate. Ka tirohia pea e rātou ngā āhuatanga rerekē o tō ngākau, ō whatukuhu, tō pūnaha gastrointestinal, me tō pūnaha mimi. Ka tukuna pea he whakamātautau whakarongo ki a koe. Ka kōrero pea tō tākuta ki a koe mō ngā whakamātautau ira.

Ngā Whakamātautau Whakaahua Tuaiwi

Me tango e tō tākuta he hihi-X . Tērā pea ka tonoa e rātou he matawai CT (matawai Tomography Rorohiko) he matawai MRI rānei (Whakaahua Resonance Āhua) .

• Ngā hihi-X: Ka taea te tirotiro i te tuaiwi katoa kia kitea ai mēnā kua honoa ngā tuaiwi, mēnā he kōpae kua hernia, te pumau o te tuaiwi, me mēnā he atu āhuatanga rerekē.
• Matawai CT (`(Matawai CT)`):Ka taea e koe te tirotiro i te hanganga o ngā tuaiwi me te taurakira kua honoa kia nui ake ngā taipitopito.
• Matawai MRI: Mā tēnei matawai ka kitea mārama ngā kiko ngohengohe pērā i te taurakira, ngā kōpae i waenganui i ngā tuaiwi, ngā pakiaka io, me ngā hononga i roto i te tuaiwi, me te kite i ngā āhuatanga rerekē i ētahi atu wāhanga o te tinana.

He pehea te rongoa o te mate Klippel-Feil (KFS)?

Kei runga i ō tohu te maimoatanga. Tērā pea me rongoā koe , me/ranei me whakaora tinana. Me mōhio koe ki ngā mōrearea o tētahi aituā, me karo hoki i ngā mahi mōrearea. Ehara i te mea ko te katoa e pāngia ana e te KFS e hiahia ana ki te pokanga.

Ngā maimoatanga whānui me ngā rongoā

He tokomaha te hunga kāore e hiahiatia he pokanga ka ora pai mā te whakamahi i ngā maimoatanga ngāwari pēnei i ngā kara o te kaki, ngā whitiki tautoko, me te kume. Tērā pea ka tohua e tō tākuta he rongoā hei whakaiti i te mamae me te pupuhi.

Pokanga (`(Pokanga)`)

He nui ake te tūponotanga ka hiahiatia he pokanga mēnā:

• Mena he raruraru kei tō pūnaha io, arā, tō roro, tō taurakira, me ngā io.
• Mena he āhua rerekē tōu, he koretake rānei tōu tuarā.
• Mena kua puta he ngoikore uaua hou i a koe, he tohu pea tēnei nō tētahi mea kino e pā ana ki tō tuaiwi, ki tō taurakira rānei.
• Mena he rerekētanga kei roto i ētahi atu okana.

Mena kei a koe tētahi, neke atu rānei ngā tuaiwi i roto i tō kaki i raro i te tuaiwi C3 (arā, i raro i ngā tuaiwi C1 me C2 e tata ana ki te angaanga), he nui noa iho pea te tirotiro noa i ia wā, me te aroturuki i te āhua. Mena kei te takaro koe, kei te takaro rānei tāu tamaiti i ngā hākinakina pā pērā i te hoki, i te whutupōro rānei, ka tūtohu pea tō tākuta kia haere tonu koe ki te takaro i aua hākinakina i muri i tō ako ki te tiaki i tō kaki.

Heoi, ki te mea kua honoa ō tuaiwi ki runga ake i te tuaiwi C3 i roto i tō kaki (arā, e tata ana ki te angaanga), me karo rawa koe i ngā hākinakina kaha te pānga, nā te mea he nui ake te tūponotanga ki te pāngia e te whara tuaiwi morearea.

Ka tirotirohia e tō tākuta tō ngākau, ō pukahukahu, tō pūnaha whakaputa uri, ō whatukuhu, me ētahi atu okana kia tere ai te tautuhi i ngā raruraru me te whakahaere, te rongoā rānei i ngā huringa, te taunaki rānei i tētahi pokanga e tika ana.

Ka kaha ake te mate o Klippel-Feil Syndrome (KFS) i roto i te waa?

Ae, ka kino haere te mate Klippel-Feil (KFS) i roto i te wā. Mena he rerekē tō tuarā, ka nui ake te tūponotanga ka pāngia koe e ngā raruraru i a koe e pakeke haere ana. Hei tauira, ka taea e ngā raruraru kōpae pirau te whakararu i te io, te mamae o te tuara me te tuaiwi, te ngoikore rānei o ngā peka.

He nui ake te tūponotanga ka whara koe i te hinganga me ētahi atu pānga ki tō tinana. I roto i te wā, ka puta ake pea ētahi atu raruraru ā-roto. Koia te mea nui kia tūtaki koe ki tō tīma hauora i ia wā, i ia wā. Mā rātou koe e tirotiro, e whakahaere ngā whakamātautau e tika ana, ā, ka whakatau, ka whakarerekē rānei i tō maimoatanga.

Ka pa te mate a Klippel-Feil Syndrome (KFS) ki te oranga?

He mea nui te kitea wawe o te Klippel-Feil Syndrome (KFS). Koinei te wā ka taea ai te whakahaere i ngā raruraru hauora mā te pokanga, ngā tikanga kore-pokanga, te tirotiro āta rānei i roto i te wā. Ki te rongoāhia e koe ngā āhuatanga rerekē, me te whai i ngā tohutohu a tō tākuta hei tiaki i tō tuaiwi, ka taea e koe te noho i te oranga noa.

He aha te momo āpōpō ka taea e te tangata e pāngia ana e te Mate Klippel-Feil (KFS) te tumanako?

Ka whakawhirinaki tō putanga ki te momo mate kei a koe (ngā wāhanga o tō tinana e pāngia ana) me ētahi atu āhuatanga kei a koe. He rerekē te katoa. Ka kōrero tō tīma hauora ki a koe mō tō āhuatanga i ngā haerenga auau. Tērā pea kāore he tohu o ētahi tāngata, ko ētahi ia he tohu nui e whakaiti ana i te kounga o ō rātou oranga.

Ka kōrero ō tākuta ki a koe mō te hiahia ki te mahi i tetahi mea hei tiaki i tō tuaiwi, te āhei rānei ki te tākaro i ngā hākinakina whai pānga nui, te hiahia rānei ki te hanga i ētahi atu huringa āhua noho. Ka kōrero anō hoki rātou mō te hiahia ki te pokanga.

Ko wai ngā tohunga hauora ka whai wāhi mai ki te tiaki i ahau?

He rerekē ngā momo tohunga hauora ka whai wāhi pea ki tō manaakitanga. Kei roto i ēnei ko:

• Tō kaiwhakarato auau.
• He tohunga rongoā tamariki, he tohunga rongoā ā-roto rānei.
• He tākuta roro.
• Taote pokanga roro.
• He taote pokanga wheua.
• He taote pokanga waha me te taote pokanga kanohi.
• He tohunga ngakau.
• He tākuta tohunga te gastroenterologist e tohunga ana ki te pūnaha nakunaku.
• He tohunga tākihi (Ngā Tohunga Tākihi).
• He tohunga taringa, ihu, me te korokoro (Otolaryngologist).
• He tohunga whakarongo.
• Tohunga whakahaere mamae.
• Kaiwhakaora tinana.

Hei whakamutunga, ngā mea hei maumahara (Karere hei tango ki te kāinga)

Ko te Klippel-Feil Syndrome (KFS) he mate tuaiwi onge e honoa ai ngā tuaiwi e rua, neke atu rānei o te kaki.Ka taea e tēnei āhuatanga te arahi i ngā raruraru maha atu i roto i te tuaiwi, ā, ka pā hoki ki ētahi atu wāhanga o te tinana.

Heoi, kāore i te rite te katoa. Tērā pea he momo KFS ngawari tōu, kāore he tohu nui. Tērā pea he raruraru hauora nui ake tōu e hiahia ana kia rongoatia mō te wā roa. Kaua e manukanuka, ka noho tahi tō rōpū tohunga ki a koe i ia taahiraa o te ara.

Ko te mea nui ko te tautuhi wawe i te mate, te whiwhi maimoatanga tika, me te whai i ngā tohutohu a tō tākuta. Kātahi, i te nuinga o te wā, ka taea e koe te noho i te oranga noa, harikoa. Mena he pātai, he ruarua rānei āu, kaua e whakamā ki te pātai ki tō tākuta. Kei reira rātou hei āwhina i a koe.

` Te mate Klippel-Feil, KFS, mamae kaki, mate tuaiwi, piri o te tuaiwi, mate whānau, pakari o te kaki, hanumitanga tuaiwi