Loaʻa pinepine iā ʻoe ke anu, ka maʻi palū, a me ke kuni? A i ʻole ʻaʻole paha ʻoe e hele i hoʻokahi mahina me ka ʻole o ka pepeiao, ka ʻāʻī, a i ʻole ka maʻi umauma? I kekahi manawa manaʻo mākou he mea maʻamau kēia, "Pēlā ke ʻano o ka hana ʻana o koʻu kino." ʻOiai e anu iki ana kou mau hoaaloha a e hoʻomaikaʻi i loko o ʻelua a ʻekolu paha lā, loaʻa iā ʻoe ka mea like no nā pule a ʻaʻole e hoʻomaikaʻi, malia paha e holomua ana i ka niumonia? ʻO ke kumu maoli o kēia mau mea ʻaʻole paha kou kino. I kēia lā e kamaʻilio mākou e pili ana i kahi maʻi i hūnā ʻia ma hope o kēia, akā ʻaʻohe mea e kamaʻilio nui e pili ana. ʻO ia ka CVID.
I ka ʻōlelo maʻalahi, he aha ka CVID?
ʻO CVID ka inoa piha no ka Common Variable Immunodeficiency . He kūlana genetic kēia e hoʻopilikia ai i kā mākou ʻōnaehana pale. I ka ʻōlelo maʻalahi, ua like ko mākou kino me kahi ʻāina. Aia kahi pūʻali koa e pale i kēlā ʻāina. ʻO kēia pūʻali koa ko mākou ʻōnaehana pale. Ke kaua nei kēia pūʻali koa i nā mea hoʻouka kaua haole, e like me nā virus a me nā bacteria, a pale i ko mākou kino mai ka maʻi.
I loko o kēia pūʻali koa, aia kekahi mau koa i loaʻa i ka hoʻomaʻamaʻa kūikawā. Kāhea mākou iā lākou he mau antibodies . He ʻano protein kēia mau antibodies. Ke komo kahi germ i loko o ke kino, hele kēia mau antibodies a ʻike i kēlā germ, hakakā iā ia, a luku iā ia.
ʻĀnō, eia ka mea e hana ʻia i kahi kanaka me CVID. He kakaikahi wale nō o kēia mau koa i kapa ʻia he antibodies ka hana a ko lākou kino. ʻO ia hoʻi, ua nāwaliwali ka pūʻali koa o ko lākou kino. No laila, ke komo kahi germ i loko o ke kino, ʻaʻole lawa nā koa e hakakā aku ai. ʻO ka hopena, ua maʻi pinepine lākou. Eia kekahi, ʻoi aku ka ʻino o ka maʻi a lākou e loaʻa ai ma mua o ke kanaka maʻamau, a hiki ke lōʻihi ka manawa e hoʻōla ai.
ʻO ka mea nui, ma muli o kēia nele o nā antibodies, ʻoiai nā lāʻau pale a mākou e loaʻa ai e pale aku iā mākou iho mai nā maʻi i kekahi manawa ʻaʻole hana pono. No ka mea, hoʻokomo kahi lāʻau pale i kahi germ i ko mākou kino a hoʻomaʻamaʻa iā ia e hana i nā antibodies e hakakā iā ia. Akā, ʻaʻole hiki i ke kino o kekahi me CVID ke hana i nā antibodies ma ia ʻano.
ʻOiai ua ʻike pinepine ʻia kēia maʻi i ka wā makua, hiki ke hoʻomaka nā hōʻailona i ka wā kamaliʻi.
He aha nā hōʻailona o CVID?
ʻO ka hōʻailona nui a maʻamau o kēia maʻi, ʻo ia ka maʻi pinepine. Eia nō naʻe, aia kekahi mau hōʻailona ʻē aʻe e ʻike ʻia ma waho aʻe. E nānā kākou i ke ʻano o lākou.
| Māhele hōʻailona | Nā mea e ʻike ai |
|---|---|
| Nā maʻi pinepine | - ʻO nā maʻi ʻino pinepine (Sinusitis) - Paʻa ka umauma, ka maʻi niumonia - Ka maʻi bronchitis - Nā maʻi pepeiao - ʻO ka maʻi ʻūlū, hiki ke kū ma hope o ka loaʻa ʻana o ka moa i kekahi |
| Nā pilikia o ka ʻōnaehana hanu | - Rhinitis mau loa - Paʻa ka ihu |
| Nā pilikia o ka ʻōnaehana hoʻoheheʻe | - ʻeha ka ʻōpū - Ka luaʻi a me ka luaʻi - Ka maʻi pākī |
| Nā hiʻohiʻona maʻamau ʻē aʻe | - Nā kikowaena lymph i hoʻonui ʻia - Ke emi nei ke kaumaha me ke kumu ʻole - ʻEha hui - Ke kuʻi ʻana i ka manamana lima |
ʻO ka loaʻa ʻana o hoʻokahi a ʻelua paha o kēia mau hōʻailona, ʻaʻole ia he manaʻo he CVID kou. Eia nō naʻe, inā loaʻa iā ʻoe kēia mau hōʻailona, ʻoiai nā maʻi pinepine, no ka manawa lōʻihi, he mea nui e ʻike koke i ke kauka no ka ʻōlelo aʻo.
No ke aha e ulu ai ʻo CVID? He aha ke kumu o kēia?
ʻO ke kumu nui o kēia, ʻo ia nā loli i loko o kā mākou mau genes. Hoʻomalu ʻia nā mea āpau i loko o ko mākou kino e nā kuhikuhi i loko o kā mākou DNA . Kāhea mākou i kēia mau genes kuhikuhi. Hoʻokumu ʻia ka CVID e kekahi mau loli (mutations) i loko o kēia mau genes.
ʻO ke kikoʻī, ʻo nā cell-B i loko o kā mākou ʻōnaehana pale ke kuleana no ka hana ʻana i kēlā mau antibodies i ʻōlelo ʻia ma luna. Ma muli o nā loli genetic e hoʻoulu ai i ka CVID, ʻaʻole hiki i kēia mau cell-B ke ulu pono a hiki i kahi e hiki ai iā lākou ke hana i nā antibodies. ʻO ka hopena, hāʻule nui nā pae o nā ʻano nui ʻekolu o nā antibodies i loko o ke kino, ʻo IgG, IgA, a me IgM .
E noʻonoʻo aia kahi kahua koa kahi e hoʻomaʻamaʻa ʻia ai nā koa. Ma CVID, ʻo ka mea e hana ʻia ana, ma muli o kekahi kīnā i loko o kēia kahua, ʻaʻole hiki ke hoʻomaʻamaʻa pono ʻia nā koa a hoʻouna ʻia aku. No laila, ʻaʻole lawa nā koa e pale aku i ka ʻāina.
I kēia manawa ke noʻonoʻo nei paha ʻoe, pehea i loaʻa ai iaʻu kēia mau hoʻololi genetic?
- Ma kahi o 10% o nā hihia: Hiki ke hoʻoili ʻia kēia maʻi mai nā mākua a i nā keiki.
- I 90% o nā hihia:ʻAʻole ʻike ʻia ke kumu kikoʻī o kēia maʻi. ʻO ia hoʻi, hiki i kekahi ke loaʻa i ke ʻano inā ʻaʻohe o ko lākou ʻohana i loaʻa iā ia. Ke hana ʻia nei hoʻi ka noiʻi e hoʻoholo ai inā he kuleana ko nā mea pili i ke kaiapuni i kēia.
Nā pilikia ʻē aʻe e hiki ke kū mai ma muli o CVID
Ma waho aʻe o ka maʻi pinepine ʻana, hoʻokomo pū ʻo CVID iā mākou i ka pilikia no nā pilikia olakino koʻikoʻi ʻē aʻe. No ka mea, ʻo ka ʻōnaehana pale kino kahi mea e hoʻopilikia ai i ko mākou kino holoʻokoʻa. Ke hana hewa ia, hiki iā ia ke hoʻopilikia i nā ʻōnaehana ʻē aʻe.
Nā maʻi Autoimmune
ʻO kēia ka manawa e hoʻomaka ai ko kākou ʻōnaehana pale ponoʻī e hoʻouka i ko kākou mau hunaola olakino ponoʻī. Ua like ia me ko kākou pūʻali koa ponoʻī e hoʻouka ana i ko kākou poʻe ponoʻī. ʻOi aku ka nui o ka pilikia o ka poʻe me CVID i ka loaʻa ʻana o kēia mau ʻano maʻi. Eia kekahi mau laʻana:
- ʻO ka ʻāʻī rheumatoid
- ʻO ka Anemia Hemolytic Autoimmune (Luku ʻana o nā cell koko ʻulaʻula)
- Nā maʻi e hoʻopilikia ai i ke kahe koko (Antiphospholipid Syndrome)
- ʻO kekahi mau maʻi ate (Autoimmune Hepatitis)
Nā Maʻi Mama Mau Loa
Hiki i nā maʻi umauma pinepine ke hōʻino i nā māmā i ka hala ʻana o ka manawa, e alakaʻi ana i nā maʻi māmā mau loa e like me ka hānō, COPD, a me ka bronchiectasis.
Nā pilikia ʻē aʻe
- Kanesa: ʻOi aku ka nui o ka pilikia o ka poʻe me CVID i ka loaʻa ʻana o nā maʻi kanesa o ka ʻōnaehana lymphatic (lymphoma) a me ka ʻōnaehana gastrointestinal ma mua o ka heluna kanaka maʻamau.
- Splenomegaly: Ka pehu ʻana o ka spleen, ʻo ia kekahi ʻāpana o ka ʻōnaehana pale.
- Granulomas: Nā puʻupuʻu liʻiliʻi i hana ʻia e ka hōʻuluʻulu ʻana o nā pūnaewele pale i loko o nā ʻōpū e like me nā māmā a me ke akepaʻa.
- Kaumaha: Aia kahi pilikia o ka loaʻa ʻana o ke kaumaha ma muli o ke kaumaha o ka noho ʻana me kahi maʻi lōʻihi.
Pehea e ʻike ai ke kauka i ka CVID?
Ke hele ʻoe e ʻike i ke kauka no kou maʻi pinepine ʻana, e nīnau ʻo ia iā ʻoe e pili ana i kāu mau hōʻailona a nānā iā ʻoe. Inā kānalua ʻia ka CVID, ʻo ke ala nui e hōʻoia ai me ka hoʻāʻo koko .
Ke ana kēia hoʻāʻo koko i ka nui o nā antibodies i loko o kou koko. ʻOi loa inā haʻahaʻa loa nā pae o nā antibodies IgG, IgA, a me IgM i ʻōlelo ʻia ma luna, he hōʻailona koʻikoʻi ia o CVID.
Eia kekahi, inā pono, hiki ke hana ʻia nā hoʻāʻo genetic. Hiki ke hana ʻia nā hoʻokolohua like ʻole e nānā i nā kūlana olakino ʻē aʻe.
He aha nā lāʻau lapaʻau no kēia? Hiki ke ho'ōla ʻia?
ʻAʻole hiki ke ho'ōla piha ʻia ka CVID. Akā, ʻo kēiaHe maʻi hiki ke mālama ʻia. ʻO ka lāʻau lapaʻau nui no kēia, ʻo ia ka Immunoglobulin Replacement Therapy .
I ka ʻōlelo maʻalahi, ʻo kēia kahi āu e hāʻawi ai i kou kino i nā antibodies (immunoglobulins) hiki ʻole iā ia ke hana ma kāna iho. Hoʻopuka ʻia nā antibodies mai ka plasma koko o ka poʻe olakino. Ua like kēia me ka lawe ʻana mai i nā koa i aʻo ʻia mai nā ʻāina ʻē i ka wā ʻaʻole lawa nā koa ponoʻī o ka ʻāina.
ʻElua ala nui e hāʻawi ai i kēia lāʻau.
| ʻAno lapaʻau | Wehewehena |
|---|---|
| ʻO ka Immunoglobulin intravenous (IVIg) | ʻO kēia ka hāʻawi ʻana i nā antibodies pololei i loko o kahi aa, e like me ka saline. Pono ʻoe e hele i ka haukapila a i ʻole ke keʻena lapaʻau i kēlā me kēia 3-4 pule e loaʻa ai kēia lāʻau lapaʻau. |
| ʻO ka Immunoglobulin Subcutaneous (SCIg) | ʻO kēia ke komo ʻana i nā antibodies ma lalo o ka ʻili (ma ka ʻōpū a i ʻole ka ʻūhā) me ka hoʻohana ʻana i kahi nila liʻiliʻi. Hiki ke hana ʻia kēia ma ka home , hoʻokahi manawa i ka pule a i ʻole i kēlā me kēia ʻelua pule . |
Na kāu kauka e hoʻoholo i ka mea o kēia mau lāʻau ʻelua i kūpono loa iā ʻoe. He mea kēia lāʻau āu e pono ai e lawe no ke koena o kou ola . Inā lawe pololei ʻoe i kēia lāʻau, hiki iā ʻoe ke kāohi nui i ka alapine (frequency) o nā maʻi.
Eia kekahi, inā ulu kahi maʻi bacteria, hiki ke hāʻawi ʻia iā ʻoe i nā antibiotics e mālama ai, a hiki ke haʻi ʻia iā ʻoe e hoʻomau i ka lawe ʻana i nā antibiotics e pale aku i ka maʻi.
He aha kāu e pono ai e ʻike i ka wā e noho pū ana me CVID?
ʻOiai hiki ke paʻakikī ke noho me CVID, me ka hoʻokele kūpono a me ka ʻike, hiki iā ʻoe ke ola i kahi ola maʻamau.
- Mai hōʻalo i ka lāʻau lapaʻau: He mea nui e lawe i kāu lāʻau antiretroviral i ka manawa kūpono a me ka nui kūpono.
- E makaʻala no nā hōʻailona o ka maʻi:Inā ʻike ʻoe i kekahi mau hōʻailona mua o ka maʻi, e like me ke kuni, ke kuni, a i ʻole ka ʻeha o ke kino, e haʻi koke i kāu kauka. ʻO ka hoʻomaka ʻana i ka lāʻau lapaʻau i ka wā mua e hiki ke kōkua i ka pale ʻana i ka maʻi mai ka ʻino ʻana.
- Nā Pale ʻAna: Mai loaʻa i kekahi mau pale ʻana me ka ʻole o ka nīnau mua ʻana i kāu kauka. ʻO nā pale ola, ʻoiai nā mea i loaʻa nā maʻi ola, hiki ke lilo i mea weliweli no ka poʻe me CVID.
- Nā nānā ʻana no nā pilikia ʻē aʻe: No ka ʻike ʻana i nā hōʻailona mua o nā maʻi e pili ana i ka CVID e like me ke kanesa a me ka maʻi māmā, e kuhikuhi kāu kauka iā ʻoe no nā nānā ʻana i nā manawa maʻamau. Mai poina iā lākou.
- Ola kino: He mea maʻamau ke kaumaha i ka wā e noho ana me kahi maʻi lōʻihi. Inā ʻoe e kaumaha a hopohopo paha, e kamaʻilio me kāu kauka a i ʻole kekahi mea kokoke iā ʻoe e pili ana i ia mea.
I kekahi mau makahiki i hala aku nei, he maʻi ola ko CVID. Akā me nā lāʻau lapaʻau antibody o kēia lā, ʻoi aku ma mua o 75% o nā maʻi CVID e ola ana ma mua o 25 mau makahiki ma hope o ka hōʻoia ʻana. No laila me ka mālama kūpono, hiki ke ola i kahi ola lōʻihi a olakino.
I ka manawa hea e pono ai iaʻu ke ʻike i ke kauka?
Inā loaʻa iā ʻoe nā mea e like me kēia, e ʻike pono i ke kauka a e ʻimi i ka ʻōlelo aʻo.
- Inā loaʻa pinepine iā ʻoe nā maʻi bacteria: No ka laʻana, inā loaʻa iā ʻoe ka maʻi pneumonia, sinusitis, a i ʻole nā maʻi pepeiao i nā manawa he nui i ka makahiki.
- Inā he mau hōʻailona lōʻihi: nā mea e like me ka ʻeha pinepine o ka ʻōpū, ka pehu ʻana, a me nā pilikia o ka māmā.
- Inā maʻi ʻoe ma hope o ka loaʻa ʻana o kahi lāʻau pale ola.
Ke kamaʻilio ʻoe me kāu kauka e pili ana i kēia mau mea, hiki iā ia ke hoʻoholo inā he mea kēia e pono ai ka noiʻi hou ʻana a i ʻole.
Leka Lawe-Home
- ʻAʻole "maʻamau" nā maʻi pinepine a koʻikoʻi. Hiki iā lākou ke lilo i hōʻailona o kahi pilikia olakino.
- He nāwaliwali ka CVID o ka ʻōnaehana pale kino, ʻo ia hoʻi, ʻaʻole hiki i ke kino ke hana i nā antibodies e pono ai e hakakā i nā germs.
- Hiki ke ʻike ʻia kēia kūlana me kahi hoʻāʻo koko maʻalahi.
- ʻOiai ʻaʻole hiki ke ho'ōla loa ʻia ka CVID, hiki ke kaohi pono ʻia a hiki ke hoʻokō ʻia ke ola olakino me ka Immunoglobulin Replacement Therapy.
- Inā loaʻa iā ʻoe ʻo CVID, he mea nui loa e hana pū me kāu kauka, e loaʻa ka lāʻau kūpono, a pale iā ʻoe iho mai nā maʻi.
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