Ke maʻi pinepine nei ʻoe? Hiki paha ke lilo i ka hemahema mua o ka pale ʻana.

Ke maʻi mau nei ʻoe? A i ʻole ke manaʻo nei ʻoe ua ʻoi aku kou laha ma mua o nā poʻe ʻē aʻe a puni ʻoe? Inā he anu kou akā ua lōʻihi ka manawa e hoʻōla ai, mai hoʻokuke wale iā ia me he mea maʻamau. Hiki paha i ka ʻōnaehana pale o kou kino, ʻo ia hoʻi ka ʻōnaehana pale, ua nāwaliwali iki. I kēia lā e kamaʻilio mākou e pili ana i kahi kumuhana i ʻike ʻole ʻia e ka poʻe he nui, akā he mea nui loa ia. ʻO ia hoʻi nā maʻi pale mua (PIDD).

He aha ka Immunodeficiency mua?

I ka ʻōlelo maʻalahi, ua like ka ʻōnaehana pale o ko kākou kino me kahi pūʻali koa e pale ana i kahi ʻāina. ʻO ka hana a kēia pūʻali koa, ʻo ia ke pale aku iā kākou mai nā maʻi ma ke kaua ʻana aku i nā mea komo hewa mai nā ʻāina ʻē, e like me nā bacteria a me nā virus.

E noʻonoʻo, he aha ka mea e hiki mai ana inā ʻaʻole i hoʻomaʻamaʻa pono ʻia kekahi o nā koa o kēia pūʻali koa, a inā ʻaʻole i loaʻa iā lākou nā mea kaua e pono ai lākou? He mea maʻalahi loa ia no nā ʻenemi ke komo i ka ʻāina a hana i ka pōʻino, ʻeā? Pēlā nō ia me kekahi me ka Primary Immunodeficiency Syndrome (PIDS). Ma kēia kūlana, ʻaʻole hana pono nā ʻāpana o kāu ʻōnaehana pale mai ka hānau ʻana mai. ʻO ia hoʻi, ua nāwaliwali iki nā pale o kou kino.

Ma muli o kēia, hiki iā ʻoe ke maʻi pinepine ma mua o nā poʻe ʻē aʻe. Eia kekahi, ʻoi aku ka nui o kou loaʻa ʻana i kahi maʻi koʻikoʻi a i ʻole nā ​​​​pilikia mai kahi maʻi i maʻa mau a hoʻopau iā ia iho.

He aha nā ʻano nui o kēia?

Aia ma mua o 400 mau ʻano o kēia mau maʻi pale kino mua. He ʻoluʻolu loa kekahi a ʻaʻole nui ka hopena iā ʻoe. Akā hiki i kekahi mau ʻano ke koʻikoʻi loa, a hiki ke hoʻoweliweli i ke ola. Hōʻike kekahi mau ʻano i nā hōʻailona i ka wā hānau, a ʻo kekahi ʻano ʻaʻole paha e hōʻike i nā hōʻailona a hiki i kou wā makua.

Aia ma lalo iho kekahi o nā kūlana nui e hāʻule ana i loko o kēia māhele. He mea ʻē paha kēia mau inoa iā ʻoe, akā he mea nui e makaʻala iā lākou i ke kamaʻilio ʻana me ke kauka.

He hānau ʻia anei nā maʻi āpau e pili ana i ka pale ʻana i ka maʻi?

ʻAʻole. He nīnau koʻikoʻi loa kēlā. ʻO ka hemahema pale kino mua a mākou e kamaʻilio nei a hiki i kēia manawa, he mea hānau mai ia, i hoʻokumu ʻia e nā kumu genetic.

Eia nō naʻe, aia kekahi ʻano ʻē aʻe i kapa ʻia ʻo Secondary Immunodeficiency . Hana ʻia kēia ma hope o kou hānau ʻana, ma muli o kekahi maʻi ʻē aʻe, a i ʻole ma muli o kahi lāʻau lapaʻau āu e lawe nei. ʻOiai he ʻano ʻokoʻa loa kēia, hiki ke like loa nā hōʻailona.

E nānā kākou i ka mea e hiki ai ke hana i ka immunodeficiency lua.

Inā manaʻo wau he maʻi koʻu, he aha nā hōʻailona e pono ai iaʻu e ʻike?

ʻAe, i kēia manawa ke noʻonoʻo nei paha ʻoe, "ʻAuē, ʻaʻole maopopo iaʻu inā loaʻa iaʻu kekahi mea e like me kēia." E nānā kākou i nā hōʻailona nui. ʻOiai he hoʻokahi a ʻelua paha o kēia mau hōʻailona, ​​ʻaʻole ia he manaʻo ua loaʻa iā ʻoe kēia maʻi. Akā inā loaʻa iā ʻoe kekahi o lākou i nā manawa a pau, ʻoi aku ka maikaʻi o ke ʻike ʻana i ke kauka a loaʻa ka ʻōlelo aʻo.

• ʻOi aku ka maʻi pinepine ma mua o nā poʻe ʻē aʻe: Inā loaʻa koke iā ʻoe nā maʻi ma mua o ka poʻe a puni ʻoe.
• He maʻi e lōʻihi ai ka manawa e hoʻōla ai: ʻOiai ke anu maʻamau e mau ana no nā pule.
• Pono e lawe i nā lāʻau antibiotic no ka manawa lōʻihi: Pono e lawe i nā lāʻau antibiotic no nā pule, ʻoiai no kahi maʻi bacteria e hoʻomaʻemaʻe mau i loko o kekahi mau lā.
• ʻŌpū nui.
• Nā ʻōpū lymph pehu.
• Ka pohō kaumaha i wehewehe ʻole ʻia a i ʻole, i ke ʻano o kahi keiki, ka ulu ʻana o ka ulu.
• ʻO ka ʻōpū pinepine a me ka maʻi pākī.
• Ke hāʻawi ʻia kahi lāʻau pale ola, ʻoi aku ka nui o nā hopena ʻaoʻao ma mua o nā mea ʻē aʻe.

ʻO ka hapa pinepine, loaʻa i ka poʻe me kēia mau maʻi nā hōʻailona ma mua o 20 mau makahiki. Eia nō naʻe, hiki iā lākou ke ʻike ʻia i kēlā me kēia manawa o ke ola.

No ke aha lā e hana ʻia ai kekahi mea e like me kēia?

E like me kā mākou i ʻōlelo ai ma mua, ʻo ke kumu nui o ka hemahema mua o ka pale ʻana , ʻo ia nā loli genetic. E like me ka hiki i kahi pepeke liʻiliʻi i loko o kahi polokalamu kamepiula ke hoʻomau, ʻo nā loli i loko o nā genes, ka palapala kumu o ko mākou kino, ke kumu o ka ulu ʻole ʻana a i ʻole ka hana pono ʻana o ka ʻōnaehana pale.

ʻO kēia ke kumu o ka ʻōnaehana pale:

• Hiki ke hōʻike i ka hana haʻahaʻa ma mua o ka maʻamau.
• ʻAʻole paha i loaʻa kekahi mau ʻano kelepona koʻikoʻi.
• Hiki paha ke hana ʻole loa.

ʻO ka maʻamau, holo kēia mau maʻi i loko o nā ʻohana. ʻO ke ʻano kēia, inā loaʻa i kou mau mākua a i ʻole kou mau kaikaina ke ʻano, aia ʻoe i ka pilikia o ka loaʻa ʻana. ʻOi aku ka maʻamau o kēia mau maʻi i nā kāne.

Pehea e ʻike ai ke kauka i kēia?

Ke hele ʻoe e ʻike i ke kauka, e noʻonoʻo ʻo ia i kekahi mau kumu e hoʻoholo ai inā loaʻa iā ʻoe kēia maʻi.

1. Kou mōʻaukala olakino: E nīnau ʻia ʻoe e pili ana i nā maʻi i loaʻa iā ʻoe a me ka pinepine o kou maʻi ʻana.

2. Hoʻokolokolo kino: E hāʻawi ʻia ʻoe i kahi hoʻokolokolo kino piha.

3. Kou mau hōʻailona: E nīnau e pili ana i ka ʻeha āu e ʻike nei.

4. Kou moʻolelo ʻohana: E nīnau inā ua loaʻa i kekahi o kou ʻohana kēia maʻi.

Ma hope o kēlā, hiki ke hana ʻia kekahi mau hoʻokolohua e hōʻoia i ka maʻi.

He aha nā lāʻau lapaʻau no kēia?

Aia ka lāʻau lapaʻau i ke ʻano o ka immunodeficiency āu. E haʻi aku kāu kauka iā ʻoe i nā ala maikaʻi loa e pale aku ai a mālama i nā maʻi.

ʻO nā ʻano lapaʻau nui i hoʻohana ʻia:

• ʻO nā antibiotics nā lāʻau lapaʻau i hāʻawi ʻia e pale a mālama paha i nā maʻi bacteria.
• Nā lāʻau antiviral no nā maʻi viral.
• Lapaʻau IVIG: ʻO kēia ke komo ʻana i kou kino me nā antibodies mai nā poʻe olakino. Ua like ia me ka hoʻohui ʻana i kahi hui hou o nā koa i aʻo ʻia i ka pūʻali koa o kou kino. Hoʻoikaika kēia i kou palekana no kekahi manawa.
• Hoʻoili pūnaewele kumu: He lāʻau lapaʻau kēia no ka poʻe me nā maʻi koʻikoʻi loa. Ma kēia, hoʻoili ʻia nā pūnaewele kumu i lawe ʻia mai kahi kanaka olakino i loko o ka mea maʻi, i ka hoʻāʻo ʻana e kūkulu i kahi ʻōnaehana pale kino hou a olakino.
• Lapaʻau Gene: He lāʻau lapaʻau hou kēia e hoʻomohala ʻia nei. Hoʻāʻo ia e hoʻoponopono i ka gene kīnā a hoʻololi paha me kahi gene olakino.

Āhea wau e ʻike ai i ke kauka?

Loaʻa i nā kānaka a pau ka maʻi i kēlā me kēia manawa. He mea maʻamau kēlā. Akā, ʻo wai ka mea ʻike maikaʻi i kou kino ma mua ou? Inā manaʻo ʻoe, "Ua hewa kekahi mea, ua maʻi mau wau," mai hoʻowahāwahā i kēlā manaʻo. E ʻike koke i ke kauka.

Eia kekahi, inā ʻoe e mālama ʻia nei no kēia ʻano,

• Inā manaʻo ʻoe ʻaʻole kōkua ka lawe ʻana i ka lāʻau lapaʻau
• Inā loaʻa iā ʻoe ke kuni a i ʻole kekahi maʻi ʻē aʻe

E hoʻomaopopo koke i kāu kauka. E hāʻawi ʻo ia iā ʻoe i nā ʻōlelo aʻoaʻo e pono ai e pale aku i nā pilikia.

Pehea ʻoe e noho ai me ke kūlana e like me kēia?

Hiki ke paʻakikī ke ola me kēia maʻi. Pono ʻoe e makaʻala i nā maʻi i nā manawa a pau. Pono paha ʻoe e lawe i ka lāʻau lapaʻau no ke koena o kou ola. Akā, ʻaʻole ʻoe hoʻokahi. Hiki i kāu kauka, ʻohana, a me nā hoaaloha ke kōkua iā ʻoe.

Aia kekahi mau mea maʻalahi hiki iā ʻoe ke hana e pale aku i nā maʻi:

• E holoi mau i kou mau lima me ke kopa. He mea nui loa kēia ma mua o ka ʻai ʻana a ma hope o ka hoʻohana ʻana i ka lua.
• E kiʻi i nā lāʻau pale i ʻōlelo ʻia e kāu kauka i ka manawa kūpono.
• Ka lawa ʻana o ka hiamoe .
• Ma hope o ka ʻai kaulike a olakino hoʻi .
• E noho ikaika kino i ka hiki.

Hiki i kāu poʻe aloha ke kōkua i ka pale ʻana iā ʻoe. E haʻi i kou ʻohana a me kou mau hoaaloha e pili ana i kēia. Inā loaʻa iā lākou ke anu a i ʻole kekahi maʻi ʻē aʻe, e noi iā lākou e haʻi iā ʻoe ma mua o ko lākou hele ʻana mai e ʻike iā ʻoe. Ma kēlā ala, hiki iā ʻoe ke pale iā ʻoe iho mai ka maʻi ʻana.

Hiki ke hoʻoluhi i kekahi manawa ke noho me kahi maʻi e like me kēia. Akā e hoʻomanaʻo, he ʻāpana wale nō kēia o kou olakino. ʻAʻole ia e wehewehe i kou ʻano.