E mōhio ana koe ki te mate toto toto iti? Me kōrero tāua!

Kua rongo kē koe i te ingoa 'Sickle Cell Anemia'? Tērā pea he ahua rerekē tēnei ingoa, he ahua whakamataku rānei. Engari he āhuatanga ira e pā ana ki ō tātou toto. Ki te kī māmā noa, ko te mea ka tupu i roto i tēnei ko te hurihanga o te āhua o ō tātou toto whero, arā, ngā toto whero i roto i te toto. Pērā i te toronaihi (koia i huaina ai ko te 'manaihi'). Ka taea e tēnei huringa te whakararu i ngā raruraru hauora. Nō reira, me kōrero taipitopito atu tātou mō tēnei i tēnei rā?

He aha te mate toto pūtau hāripiri? He aha tonu te mea ka tupu?

Ko te mate toto toto hāripiri te momo tino kino o te rōpū nui e kiia nei ko te 'Mate Toto Toto'. He mate toto whānau tēnei, arā, he mate toto tuku iho . Ko te take matua o tēnei he whakarerekētanga ira. Nā tēnei whakarerekētanga ira, kāore ngā toto toto whero e hangaia ana i roto i tō tātou tinana i te porowhita i te nuinga o te wā, engari he piko, he totoro pērā i te toto toto (i te āhua o te reta C). Ka karangatia hoki ēnei e ngā tākuta he "pūtau toto toto".

Titiro mai, he porowhita, he ngāwari hoki ō tātou toto whero noa, nō reira ka taea e rātou te haere mā roto i ō tātou uaua toto ngawari, me te kawe i te hāora ki ngā wāhanga katoa o te tinana, ki ngā okana katoa, me ngā kiko katoa. Engari he pakari, he piri hoki ēnei toto whero āhua-toru. Nō reira, kāore e taea te haere mā roto i ngā uaua toto, engari ka mau ki ētahi wāhi. Pērā i te waka i runga i te rori. Ko tētahi atu mea, ka tere ake te pakaru me te mate o ēnei toto 'toru' i ngā toto whero noa. Nā ēnei mea katoa, ka heke te maha o ngā toto whero hauora i roto i tō tinana, ka puta he anemia kino. Arā, he kore toto.

I ngā wā o mua, he iti noa te tūponotanga o te oranga o ngā pēpi i whānau mai me tēnei mate ki te pakeketanga. Heoi, nā te whanaketanga o te rongoā, te kitenga wawe, me ngā maimoatanga hou , kua tino rerekē tēnei. He tokomaha ngā tāngata e ora ana ki te 50 tau te pakeke, neke atu rānei.

He pēhea te noa o tēnei mate i Sri Lanka? Ko wai te hunga ka nui ake te tūponotanga ka pāngia e tēnei mate?

He uaua te kimi tatauranga mō tēnei mate i Sri Lanka. Engari ki te titiro koe ki te ao whānui, he tino noa tēnei mate i roto i ngā tāngata o Āwherika, o Ūropi ki te Tonga, o te Waenganui Rawhiti, o Āhia rānei ngā uri Īniana. Ko te tikanga he hononga ira kei reira.

He aha ngā tohu o te mate toto pūtau hāripiri?

Ka rerekē pea ngā tohu o tēnei mate i ia tangata, engari he maha ngā tohu e kitea whānuitia ana:

• Te ngenge i te mate toto iti: Ina puta tēnei āhuatanga i roto i ngā pēpi nohinohi, ka tangi pinepine pea rātou, ka kore e pai te hauora, ā, ka kore e pai ki te whāngai u.
• Ngā mate pāwera auau:Ka pā kino tēnei mate ki tō tātou ate. He wāhanga nui te ate o tō tātou pūnaha ārai mate. Nō reira, ina ngoikore, ka nui ake te tūponotanga ka pāngia e ngā mate me ngā mate pāwera. Heoi, nā ngā paturopi me ngā kano ārai mate e wātea ana i nāianei, kua tino whakaitihia tēnei mōrearea.
• Mamae: Koinei tētahi o ngā tohu tino kitea, ā, he kino hoki o tēnei mate. Kāore e nui te hāora e whiwhihia ana e ngā kiko o te tinana, ā, ka kino ngā kiko. Ko tēnei kino te take o te mamae. Ko ngā wāhi tino kitea o te mamae ko ngā ringa, ngā waewae, te uma, me te tuara. I ētahi wā ka tīmata hei mamae iti, ā, ka piki haere, ka huri rānei hei mamae e kore e taea te whakamanawanui.
• Te pupuhi mamae i roto i ngā ringa me ngā waewae: Koinei tētahi o ngā tohu tuatahi o te mate toto toto toto-here i roto i te pēpi. Ka puta te pupuhi nā te mea ka mau ngā toto toto whero āhua-here ki roto i ngā oko toto ngawari o ngā ringa me ngā waewae o te pēpi, ka aukati i te rere o te toto.
• Ngā kanohi me te kiri kōwhai mai i te jaundice: Ko tō tātou ate te kawenga mō te tātari i ngā toto whero. I roto i te anemia pūtau maripi, ka kohia he matū e kiia nei ko te bilirubin, e tukuna ana mai i ngā pūtau maripi ka mate wawe, ki roto i te tinana, ka puta te jaundice.

Ka tīmata te puta mai o ēnei tohu ina tae te pēpi ki te 6 ki te 9 marama te pakeke . I roto i te wā, i te pikinga ake o te maha o ngā pūtau kino (kino) i roto i te tinana, ka rerekē pea ngā tohu, ka kaha ake.

He aha te take e puta ai te mate toto pūtau hāripiri? He aha ngā take?

Ko te mate toto toto hāripiri ka puta mai i ngā whakarerekētanga ira i roto i ō tātou ira. Ina koa, he ira kei reira e kiia nei ko te ira HBB. Mā tēnei ira tātou e tohutohu kia hanga he pūmua e kiia nei ko te beta-globin, he wāhanga o tō tātou hemoglobin. Ko te hemoglobin, e mōhio ana koe, te mea tino nui e āwhina ana i ō tātou toto whero ki te kawe i te hāora.

Nō reira, kia pāngia koe e te mate toto totoka, me riro mai i a koe te ira kotahi kua whakarerekētia mai i tō whaea me tō pāpā . I ētahi wā, ki te riro mai i a koe ngā ira e rua kua whakarerekētia mai i ngā mātua e rua, ka taea e koe te whakawhanake i ētahi atu momo mate toto totoka, he iti ake te kino. Ka kiia ēnei e ngā tākuta he 'whakarerekētanga ira rerekē'.

He aha ngā raruraru ka puta mai i tēnei āhuatanga?

Ka taea e te anemia pūtau maripi te whakararu i ngā raruraru kino, ā, i ētahi wā ka morearea te ora . Hei tauira, ko te hunga e pāngia ana e tēnei mate e hiahia ana ki te tiaki hauora ohorere me te whakauru ki te hōhipera, inā koa mō ngā āhuatanga e kiia nei ko te acute chest syndrome (ACS) me te vaso-occlusive crisis (VOC).

Tērā atu anō ngā raruraru:

• Mate tākihi mau tonu: Ka puta tēnei āhuatanga ina kore e nui te hāora e whiwhihia ana e ngā tākihi, ka pakaru ai te kiko.
• Ngā retina kua wehea: Ka tupu pea tēnei mena ka āraia e ngā pūtau maripi ngā oko toto i roto i te kanohi.
• Priapism (te mamae o te whakatū ure): He āhuatanga e puta mai ana i te aukati i ngā oko toto i roto i te ure.
• Te aukati i te whēkau: Ki te mau ngā pūtau maripi ki roto i te whēkau, ka aukati i te rere o te toto, ka puta he anemia ohorere, kino hoki.
• Te whiu: Ko te hunga katoa e pāngia ana e te mate toto toto hāripiri, tae atu ki ngā tamariki nohinohi ( te whiu tamariki), kei te mōrearea.

He aha te mate pūkahukahu nui (ACS)?

Koinei te raruraru tino noa o te mate toto totohu. Koinei hoki te tino take o te mate, me te tuarua o ngā take matua o te noho hōhipera. Ka puta tēnei ina huihui ngā pūtau totohu, ka ārai i ngā oko toto i roto i ngā pukahukahu. Ko ngā tohu ko:

• Te mamae ohorere o te uma.
• Maremare.
• Te kirika.
• Te uaua ki te manawa.

He aha te Vaso-occlusive Crisis (VOC)?

Koinei te wā e aukati ai ngā pūtau maripi i ngā oko toto. Ka kiia hoki tēnei e ngā tākuta he "raruraru mamae nui." I roto i te VOC, ka pā te mamae kore e taea te whakamanawanui ki ngā ringa, ngā waewae, te tuara o raro, me te puku.

I ētahi wā ka kiia e ngā tākuta ngā VOC he "mate e kore e kitea." Nā te mea, i te nuinga o te wā, ko te mamae anake te tohu. Kāore he tohu o te whara, o tētahi atu mate rānei. He mamae noa iho.

Ko te rongoā matua mō tēnei mamae nui ko ngā rongoā whakamamae opioid. Heoi, kua whakaatuhia e ētahi rangahau ka taea e tēnei hiahia opioid te arahi ki te noho mokemoke i roto i te hunga e pāngia ana e te anemia pūtau maripi, ka arahi pea ki te pouri me te manukanuka. Ko tētahi atu wero tēnei hei aro atu i te wā e noho tahi ana me tēnei mate.

Me pēhea te tautuhi i tēnei mate? (Tautuhinga)

Mā te tirotiro tuatahi i a koe ka tātarihia e ngā tākuta te mate toto toto toto mā te tirotiro i a koe. Tērā pea ka pā atu rātou ki tō whēkau, ki tō ate rānei. Ka pātai atu rātou mō ō tohu, inā koa te mamae o ō ringaringa me ō waewae, me tō puku. Ka pātai atu hoki rātou mō ō mate o mua, me te mea kua pāngia koe e ētahi mate. Kātahi ka whakamātautau pea rātou pēnei i:

• Tatau Toto Katoa (CBC): Kei roto i tēnei he maha ngā whakamātautau e tirotiro ana i ō toto whero.
• Hemoglobin electrophoresis: E kiia ana hoki ko te chromatography wai mahi-teitei, ka tātarihia e tēnei whakamātautau tō hemoglobin hei kimi me te ine i te momo hemoglobin rerekē e puta ai te anemia pūtau mariao.
• Ngā whakamātautau ira: Ka taea e tō tākuta te tono i ēnei whakamātautau kia kite ai mēnā kei a koe ngā huringa ira e hua ai te anemia pūtau maripi.

He aha ngā rongoā mō tēnei? Ka taea te whakaora?

Ko te maimoatanga mō te anemia pūtau hāripiri ka whakawhirinaki ki ō tohu me tō hauora whānui. Hei tauira, ki te pāngia koe e ngā raruraru kino pēnei i te mate uma acute, ngā wā mamae nui, te pāngia rānei koe e te mate pēnei i te pararutiki, ka tūtohu pea tō tākuta i te whakawhitinga pūtau take allogeneic. Koinei anake te huarahi i tēnei wā hei whakaora katoa i te anemia pūtau hāripiri .

Ko ētahi atu maimoatanga ko:

• Ngā whakawhiti toto.
• Ngā rongoā paturopi mō ngā mate pāwera.
• Ngā rongoā hei whakaora i ngā tohumate motuhake. Ko ētahi o ēnei:
• Hydroxyurea: He rongoā ārai matepukupuku tēnei. Ka whakamahia ki ngā pēpi i waenga i te 6-9 marama te pakeke, ngā tamariki, me ngā pakeke. Ka taea e ia te whakaiti i te maha o ngā raruraru kino me te whakaiti i ngā tohu o te anemia.
• Voxelorator: Mā tēnei ka ārai i te hurihanga o ngā toto whero hei toto hāripiri. Ka hoatu ki ngā tamariki neke atu i te 4 tau te pakeke.
• Te rongoā L-glutamine: Mā tēnei rongoā, ka hoatu ki ngā tamariki neke atu i te 5 tau te pakeke me ngā pakeke, ka ārai i te tipu haere o ngā pūtau maripi.
• Crizanlizumab-tmca: Ka whakaitihia e tēnei te auau o ngā mamae ohorere/momo mamae nui. Ka hoatu ki te hunga neke atu i te 16 tau te pakeke.

Ka pēhea rā tōku ao mēnā he mate toto toto toto tōku?

Ki te tini o te tangata, he mate mau tonu te mate toto totoka. Ko te tikanga me hiahia koe ki te tiaki hauora me te tautoko puta noa i tō oranga. Ka taea e ētahi te ngawari ngā tohu, ka ngawari ki ētahi atu, ā, ka nui te kino ka morearea ki ētahi atu. He rerekē te āhua o te katoa. Nō reira, kōrero ki tō tākuta mō ngā mea ka tumanakohia. Ko ia te mea e mōhio ana ki tō hauora me te pānga o te mate ki a koe.

Ka kino haere tēnei āhua i a koe e pakeke haere ana?

Ae, i a tātou e pakeke haere ana, ka puta ake pea ētahi atu raruraru hauora kino ake nā te kore e ranea te tuku hāora ki ngā whekau me ngā kiko. Ko te hunga e pāngia ana e te anemia pūtau maripi ka nui ake te mōrearea ki te pararutiki, te pakaru o ngā pukahukahu, te whatukuhu, te whēkau, me te ate.

He aha te roanga o te oranga toharite mō te tangata kua pāngia e tēnei mate?

He pai ake ngā āhuatanga o nāianei i tō mua. Mā te kitenga wawe me te maimoatanga hei whakaiti i ngā raruraru , ka taea e te hunga whai mate toto toto totoka te ora ki te 50 tau. Ko ētahi tāngata ka roa ake te ora. Mena he pātai āu mō tēnei, kōrero ki tō tākuta. Ka taea e ia te whakamārama atu ki a koe.

He ara hei ārai i te whanaketanga o tēnei mate?

He mate tuku iho te mate toto totoka, nō reira kāore e taea te ārai.Heoi, ka taea e koe te whakamātautau toto hei tirotiro mēnā kei a koe te whakarerekētanga ira e puta ai te mate toto totohu. I roto i te maha o ngā whenua whakawhanake, ka whakamatautauria ia pēpi mō te mate i te whānautanga. Ko te mea nui ko te tautuhi wawe i te mate me te tīmata maimoatanga .

Me pēhea taku noho pai me tēnei mate? (Te tiaki i a au anō)

Nā ngā maimoatanga hou kua pai ake te oranga o te hunga whai mate toto toto hāripiri. Mena kei a koe te mate, whakaarohia ēnei mea:

• Rapua he awhina hauora motuhake: He mea nui kia rapu awhina mai i tetahi roopu tohunga toto.
• Me tirotiro hauora auau: Mā te pupuri i tētahi whanaungatanga pai ki tō tākuta whānau, me te haere ki ngā tirotiro hauora auau, ka āwhina i te ārai i ngā raruraru nui.
• Whakaarohia te whakahaere mamae: He wāhanga noa te mamae o tēnei mate. Rapua he tohutohu mai i tētahi tohunga whakahaere mamae.
• Rapua he tautoko hauora hinengaro: I ētahi wā ka puta te āhua mokemoke, te pouri, me te manukanuka i tēnei mate. Ki te pēnei tō āhua, kōrero ki te tākuta.
• Tiakina koe i ngā mate urutā: Kōrero ki tō tākuta mō te werohanga. Me mahi i ngā mahi hei tiaki i a koe i ngā mate urutā.
• Kia tūpato ki tō taiao: He mea tino nui kia mau tonu te pāmahana tinana taurite mō te hunga whai mate toto totoka. Me noho tawhiti atu i te wera nui me te makariri rawa.
• Tirohia ngā whakamātautau haumanu: Kei te whakamātautau tonu ngā tākuta me ngā kairangahau i ngā maimoatanga hou. Tērā pea ka whai wāhi koe ki tētahi.

Āhea ahau me toro atu ki te tākuta?

Ki te mea kei te kino haere ō tohumate, ki te puta mai rānei he tohumate hou, me toro atu ki te tākuta tonu .

Āhea koe me haere ki te Rūma Ohotata?

Ka taea e te mate toto toto nui te whakararu i te hauora. Haere tonu ki te rūma whawhati tata mēnā ka pāngia koe e ēnei tohu:

• Ngā tohu o te kore toto (te ngenge nui, te poto o te manawa, te pā o te ngakau ki te koretake).
• He kirika neke atu i te 38.5 nekehanga Celsius (101.3 Fahrenheit).
• Mamae o te uma.
• Maremare.

Ka piki ake hoki te mōrearea o te whiu i tēnei āhuatanga. He āhuatanga ohorere hauora te whiu . Mena kei a koe ēnei tohu e whai ake nei, haere tonu ki te hōhipera:

• Ngā raruraru ki te taurite, ki te taunga rānei o te tinana.
• Te tirohanga pōuri, te tirohanga takirua rānei.
• Pōhēhētanga.
• Te ngoikore, te ngoikore rānei i tetahi taha o te tinana.
• Te uaua ki te kōrero (te hāhā).

Hei whakamutunga, ētahi mea hei maumahara

He tino uaua te mate toto toto toto. I ngā tau kua pahure ake nei, he iti noa iho te tūmanako o ngā pēpi i whānau mai me tēnei mate ki te ora. Engari,Kua tino angitu ngā rangahau hauora i roto i ngā tekau tau kua pahure ake nei, nō reira he tokomaha ngā tāngata e kaha ana ki te whakahaere i tēnei mate mau tonu, me te ora pai hoki i te oranga.

Mena kei a koe, kei tāu tamaiti rānei tēnei mate, ahakoa kei te harikoa koe mō ngā ahunga whakamua kua mahia e koe i mua, kia hihiri mō te heke mai. Kei te rapu tonu ngā kairangahau i ngā maimoatanga hou mō tēnei mate. Kōrero ki tō tākuta, kia tūpato hoki ki ngā whakamātautau haumanu hou. Kaua e mutu te tumanako . He mea tino nui te whai i ngā tohutohu hauora tika, me te whai whakaaro pai.

` Te mate toto toto iti, te mate toto iti, ngā mate tuku iho, ngā mate toto toto, ngā whakarerekētanga ira, te hemoglobin, ngā tohutohu hauora