Ke maʻi pinepine nei kāu pēpē? He hemahema mua paha kēia o ka pale ʻana i ka maʻi.

Loaʻa pinepine anei i kāu keiki liʻiliʻi ke anu , ka maʻi palū, a i ʻole ka ʻeha pepeiao ? Manaʻo paha ʻoe i kekahi manawa ua ʻoi aku ka maʻi o kāu keiki ma mua o nā keiki ʻē aʻe? I kekahi manawa, lilo ke anu maʻamau i mea koʻikoʻi e like me ka niumonia , e pono ai nā lā o ka lāʻau lapaʻau? Pono ʻoe e hopohopo nui no nā mea e like me kēia. ʻO ka ʻoiaʻiʻo, hiki i kēia ke kumu o ka nāwaliwali o ka ʻōnaehana pale o ke keiki. Ke kamaʻilio nei mākou e pili ana i ia ʻano kūlana i kēia lā.

He aha ka Primary Immunodeficiency Syndrome (PIDD)?

I ka ʻōlelo maʻalahi, he ʻōnaehana pale kino hana ʻole ko ke keiki me ka maʻi pale mua (PIDD). E noʻonoʻo i kā mākou ʻōnaehana pale kino e like me ka pūʻali koa e pale ana i ko mākou ʻāina. Mālama ia i ko mākou kino mai nā germs e hele mai ana mai waho. No laila, ke hoʻonāwaliwali ʻia kēia "pūʻali koa", hiki i nā germs ke komo maʻalahi i ke kino a hoʻoulu i ka maʻi .

Ke lohe ʻoe i kēia, makaʻu paha ʻoe, "Auē, e loaʻa anei i kaʻu keiki kēia mau maʻi a pau?" Akā ʻo ka mea maikaʻi loa, aia nā lāʻau lapaʻau maikaʻi loa e kāohi i kēia mau kūlana. Me kēlā mau lāʻau lapaʻau, hiki i ke keiki ke ola i kahi ola olakino, ʻeleu, a maʻamau e like me nā keiki ʻē aʻe. He mea hoʻoilina kēia, ʻo ia hoʻi, he kūlana ia i loaʻa i ka wā hānau, ʻaʻole he maʻi hiki ke hoʻoili ʻia mai kekahi kanaka a i kekahi kanaka.

He aha nā ʻano nui o kēia maʻi?

Aia ma mua o 550 mau ʻano o kēia mau maʻi pale ʻole. He mea maʻamau loa kekahi, he mea kākaʻikahi loa kekahi. ʻIke ʻia ka hapa nui o lākou i ka wā kamaliʻi, akā i kekahi manawa hiki ke ʻike ʻia nā hōʻailona ma hope o ke ola. E nānā kākou i kekahi o nā ʻano nui.

He aha nā hōʻailona e pono ai ʻoe e makaʻala?

Inā kānalua ʻoe ua loaʻa i kāu keiki kēia maʻi, e makaʻala i kēia mau hōʻailona. Inā hoʻomau kekahi a ʻoi aku paha o kēia mau hōʻailona, ​​e ʻike pono i ke kauka.

• Ua lohi ka ulu ʻana o ke keiki a i ʻole ʻaʻole e piʻi ana ke kaumaha.
• Nā maʻi pinepine. Eia kekahi laʻana, nā maʻi pepeiao, nā maʻi sinus , a i ʻole ka niumonia ʻelua a ʻekolu paha manawa i ka mahina .
• Nā lāʻau antibiotic maʻamauUa lilo ka maʻi i mea koʻikoʻi loa a pono ai nā lāʻau antibiotic intravenous (IV) , ma mua o nā pila .
• ʻO ka maʻi pahū mau a i ʻole nā ​​​​pilikia ʻē aʻe o ka ʻōnaehana hoʻoheheʻe.
• Nā ʻōpū lymph pehu.
• ʻŌpū nui.
• He hopena koʻikoʻi i kahi lāʻau pale ola.

Pehea e ʻike pono ai i kēia maʻi?

Inā he kānalua kou, ʻo ka mea mua e hana ai, ʻo ia ke ʻike i kāu kauka ʻohana. E nānā ʻo ia i kāu keiki a nīnau iā ʻoe i nā nīnau e like me:

A laila, hiki iā ʻoe ke kuhikuhi i kēia mau hoʻokolohua no ka ʻike hou aku:

• Hoʻāʻo koko: Lawe ʻia kahi hāpana o ke koko o ke keiki a nānā ʻia nā pae o nā pūnaewele ʻōnaehana pale a me nā antibodies.
• Nā hoʻokolohua genetic: Hiki i kēia ke ʻike pololei inā he mau hemahema i loko o nā genes e hoʻopilikia ai i ka ʻōnaehana pale.
• Hoʻāʻo Flow Cytometry: He ʻenehana hou kēia e hoʻohana ana i nā kukuna laser e aʻo hohonu i nā ʻōnaehana pale.

No ka mālama ʻana i kahi kūlana e like me kēia, he mea nui loa ia e ʻike i kahi immunologist lapaʻau .

He aha nā lāʻau lapaʻau?

ʻO ka nūhou maikaʻi, aia nā lāʻau lapaʻau kūpono loa no kēia mau kūlana. ʻElua mau pahuhopu nui o ka lāʻau lapaʻau: ka pale ʻana i nā maʻi mai ka ulu ʻana a me ka mālama pono ʻana iā lākou inā loaʻa.

1. Ka lāʻau lapaʻau no nā maʻi: Inā loaʻa i kāu keiki kahi maʻi, pono paha lākou e lawe i nā antibiotics i nā nui kiʻekiʻe a no nā manawa lōʻihi ma mua o ka maʻamau. I nā maʻi koʻikoʻi, pono paha lākou e hoʻokomo ʻia i ka haukapila a hāʻawi ʻia i ka lāʻau IV (intravenous).

2. Nā lāʻau lapaʻau e hoʻoikaika ai i ka palekana:

• ʻO ka lāʻau lapaʻau hoʻololi Immunoglobulin (Ig): I ka ʻōlelo maʻalahi, pili kēia i ka hāʻawi ʻana i ke keiki i nā antibodies e pale aku i ka maʻi mai kahi kanaka olakino ma o kahi IV. Ua like ia me ka hāʻawi ʻana iā lākou i nā "koa" mai waho. Hana ʻia kēia i kēlā me kēia pule a i ʻole kēlā me kēia mahina.
• Hoʻoili ʻana i nā pūnaewele kumu: He lāʻau lapaʻau kēia no nā keiki me nā ʻano koʻikoʻi loa o ka maʻi. Hoʻoili ʻia nā pūnaewele kumu i lawe ʻia mai kahi kanaka olakino (pinepine he lālā ʻohana) i loko o ke keiki. Hiki i kēia mau pūnaewele ke hana i nā pūnaewele palekana olakino.He lāʻau lapaʻau kēia e hiki ke ho'ōla piha i kekahi mau ʻano PIDD.
• Lapaʻau Gene: He ʻano lapaʻau hou loa kēia. Lawe ʻia nā hunaola kumu ponoʻī o ke keiki, "hoʻoponopono ʻia" ka gene kīnā i loko o ka hale hana, a hoʻokomo hou ʻia nā hunaola i loko o ke kino o ke keiki.

He mau ʻōlelo aʻoaʻo no ʻoe e mālama nei i kāu keiki

Ke noho nei me kēia maʻi, hiki iā ʻoe ke kōkua i kāu keiki e noho hauʻoli a hana e like me nā keiki ʻē aʻe.

• E ʻōlelo no kāu keiki: Inā aia kāu keiki ma ke kula, e kamaʻilio me nā kumu a wehewehe i ke kūlana o kāu keiki. E haʻi iā lākou ʻaʻole paha lākou e hiki ke hele i ke kula no kekahi manawa.
• E mālama i ka maʻemaʻe: E holoi pinepine i kou mau lima, ʻoiai ma mua o ka ʻai ʻana a ma hope o ka hoʻohana ʻana i ka lua. He mea nui loa ia e pale iā ʻoe iho mai nā germs.
• E hoʻolako i ka meaʻai maikaʻi: ʻO ka hāʻawi ʻana i ka meaʻai momona o nā huaʻai, nā mea kanu, a me nā palaoa piha e hāʻawi i kāu keiki i ka ikaika.
• E hiamoe pono: He mea nui ka hiamoe kūpono no ka ʻōnaehana pale.
• E hōʻemi i ke kaumaha: E ʻae i kāu keiki e pāʻani, e komo i nā hana leʻaleʻa, a hoʻokumu i kahi leʻaleʻa.

He mea paʻakikī paha iā ʻoe ke kū i kēia kūlana i kekahi manawa. Akā, ʻaʻole ʻoe hoʻokahi. E kamaʻilio me kāu kauka, ʻohana, a me nā hoaaloha e pili ana i kēia. Hiki nō hoʻi ke lilo i kumu ikaika nui nou e kamaʻilio me nā mākua ʻē aʻe nona nā keiki e like me kēia.

ʻO ka Immunodeficiency mua, PIDD, ʻōnaehana pale, nā maʻi pinepine, ka maʻi genetic, SCID, CVID, immunoglobulin therapy