He aha ka Common Variable Immunodeficiency? Nā Hōʻailona, Nā Kumu, a me ka Lapaʻau

ʻO ka Common variable immunodeficiency (CVID) kahi kūlana kahi e hana ʻole ai kou ʻōnaehana pale i nā antibody lawa e kū'ē i nā maʻi. E noʻonoʻo i nā antibody e like me nā kiaʻi palekana o kou kino e ʻike a hoʻouka i nā mea ʻino e like me nā bacteria a me nā virus.

Hoʻopili kēia kūlana i kahi 1 i 25,000 mau kānaka, ʻo ia hoʻi ka maʻi palekana koʻikoʻi loa i ʻike ʻia e nā kauka ma nā mākua. ʻOiai paha he mea weliweli, nui nā kānaka me CVID e ola ana i nā ola piha a hana nui me ka mālama lapaʻau kūpono a me ka mālama.

He aha ka Common Variable Immunodeficiency?

Hana ʻia ka CVID i ka wā e hiki ʻole ai i kou ʻōnaehana pale ke hana i nā immunoglobulins lawa, ʻo ia nā protein e loaʻa ai kāu mau antibody e hakakā i nā maʻi. Hana kou kino i nā ʻano like ʻole o kēia mau protein, akā i loko o CVID, emi loa nā pae ma mua o ka maʻamau.

Hōʻike ka huaʻōlelo "variable" i ka inoa i ka ʻokoʻa o kēia kūlana i kēlā me kēia kanaka. Loaʻa i kekahi poʻe nā maʻi pinepine, ʻoiai paha he mau pilikia autoimmune a i ʻole nā ​​pilikia ʻōpū. Hiki ke loli nui ka nui a me nā hōʻailona mai ke kanaka a i ke kanaka, ʻoiai ma loko o ka ʻohana hoʻokahi.

ʻIke ʻia ka hapa nui o nā kānaka me CVID ma ko lākou mau makahiki 20 a 30 paha, ʻoiai hiki ke ʻike ʻia i ka wā kamaliʻi a ma hope paha o ke ola. He maʻi mau loa kēia kūlana, ʻo ia hoʻi he ola lōʻihi, akā hiki ke mālama maikaʻi ʻia me ke kākoʻo lapaʻau kūpono.

He aha nā hōʻailona o Common Variable Immunodeficiency?

ʻO ka hōʻailona maʻamau āu e ʻike ai ʻo ia ka maʻi pinepine ma mua o ka maʻamau, ʻoi aku hoʻi me nā maʻi hanu. ʻAʻole kēia nā anu maʻamau wale nō - ʻoi aku ka nui o lākou, lōʻihi, a hoʻi hou pinepine.

Eia nā hōʻailona nui a nā kānaka me CVID e ʻike ai:

• Nā maʻi sinus pinepine e hoʻi mau ana
• Pneumonia a i ʻole bronchitis e hoʻi hou ana
• Nā maʻi pepeiao mau loa
• Nā pilikia ʻōpū a i ʻole nā ​​pilikia ʻōpū mau loa
• Nā lymph nodes pehu ʻaʻole e hele
• Ka luhi ʻaʻole e hoʻomaikaʻi me ka hoʻomaha
• Nā maʻi ʻili a i ʻole nā ​​rash

Hoʻomohala kekahi poʻe i nā hōʻailona autoimmune, kahi e hoʻouka ai ka ʻōnaehana pale i nā pūnaewele olakino. Hiki ke hōʻike ʻia kēia e like me ka ʻeha o nā hono, nā pilikia ʻili, a i ʻole nā ​​maʻi koko.

I nā hihia ʻoi aku ka liʻiliʻi, hiki iā ʻoe ke ʻike i nā pilikia koʻikoʻi e like me ka maʻi māmā mau loa a i ʻole nā ​​pilikia ate. Hoʻomohala pinepine ʻia kēia mau mea ma hope o ka manawa inā ʻaʻole i mālama pono ʻia nā maʻi, ʻo ia ke kumu o ka ʻike mua ʻana a me ka mālama ʻana he mea nui loa.

He aha nā kumu o Common Variable Immunodeficiency?

ʻAʻole maopopo loa ke kumu o CVID, akā ʻike nā mea noiʻi e pili ana i nā pilikia me ke ʻano o ka kamaʻilio ʻana o nā sela o kou ʻōnaehana pale a me ka hana pū ʻana. ʻO kāu mau sela B, ka mea kuleana no ka hana ʻana i nā antibody, ʻaʻole hana pono a i ʻole hiki ʻole ke ulu i nā sela e hana i nā immunoglobulins.

He kuleana ko nā genetics i nā hihia he nui. Ma kahi o 10-20% o nā kānaka me CVID he lālā ʻohana me ke kūlana a i ʻole kahi maʻi palekana ʻē aʻe. Eia naʻe, ʻike ʻia ka hapa nui o nā hihia me ka ʻole o ka mōʻaukala ʻohana maopopo.

Ua ʻike nā ʻepekema i kekahi mau gene e hiki ke hoʻopili i ka CVID i ka wā e loli a i ʻole hoʻololi ʻia. Hoʻoponopono maʻamau kēia mau gene i ka hana o ka ʻōnaehana pale, akā i ka wā e hana pono ʻole ai, e pilikia ka hana ʻana o nā antibody.

Hiki i nā kumu kūlohelohe ke hoʻoulu i ka CVID i nā kānaka i hoʻonohonoho ʻia ma ke ʻano genetic. Manaʻo kekahi mau mea noiʻi e hiki i kekahi mau maʻi viral a i ʻole nā ​​mea ʻē aʻe ke hoʻoulu i ke kūlana, ʻoiai ʻaʻole i hōʻoia ʻia kēia.

I ka wā e ʻike ai i ke kauka no Common Variable Immunodeficiency?

Pono ʻoe e noʻonoʻo e ʻike i ke kauka inā maʻi pinepine ʻoe, ʻoi aku hoʻi me nā maʻi hanu e like me ka lōʻihi mau loa. E makaʻala inā loaʻa iā ʻoe ma mua o ʻehā a ʻeono paha mau maʻi i kēlā me kēia makahiki e pono ai nā antibiotics.

ʻO nā hōʻailona ʻē aʻe e komo pū ana i nā maʻi ʻaʻole pane maikaʻi i nā mālama maʻamau a i ʻole e hoʻi hou mai i ka wahi hoʻokahi. No ka laʻana, inā loaʻa iā ʻoe ka pneumonia i nā manawa he nui a i ʻole nā ​​maʻi sinus mau loa ʻaʻole e hoʻomaʻemaʻe piha.

Mai kali inā loaʻa iā ʻoe nā pilikia ʻōpū mau loa me nā maʻi pinepine. ʻO ka maʻi ʻōpū mau loa, ka nalowale kaumaha wehe ʻole, a i ʻole nā ​​pilikia ʻōpū mau loa me nā maʻi e hoʻi hou ana e pono ai ka loiloi lapaʻau.

Inā loaʻa iā ʻoe ka mōʻaukala ʻohana o nā maʻi palekana a ke ʻike nei ʻoe i kēia mau ʻano, he mea nui loa ia e kamaʻilio me kāu kauka. Hiki i ka ʻike mua ke pale aku i nā pilikia a hoʻomaikaʻi nui i kou maikaʻi o ke ola.

He aha nā pilikia no Common Variable Immunodeficiency?

ʻOiai hiki ke mālama ʻia ka CVID, ʻo ka hoʻomaopopo ʻana i nā pilikia hiki ke kōkua iā ʻoe e ʻike i nā mea e nānā ai a no ke aha he mea nui ka mālama ʻana. Hoʻomohala ka hapa nui o nā pilikia i ka wā ʻaʻole i mālama pono ʻia nā maʻi ma hope o ka manawa.

ʻO nā pilikia maʻamau e komo pū ana:

• Ka hōʻino māmā mau loa mai nā maʻi hanu e hoʻi hou ana
• Ka hōʻino sinus mau loa e alakaʻi ana i nā pilikia mau loa
• Nā pilikia gastrointestinal e komo pū ana i ka maʻi inflammatory bowel
• Nā maʻi autoimmune e hoʻopilikia ana i nā ʻāpana like ʻole
• Spleen a i ʻole ate nui
• Ka hoʻonui ʻana o ka pilikia o kekahi mau kanesa, ʻoi aku hoʻi ka lymphoma

ʻOi aku ka liʻiliʻi akā ʻoi aku ka koʻikoʻi o nā pilikia hiki ke komo pū me ka bronchiectasis, kahi e paʻakikī ai ka hanu. Hoʻomohala kekahi poʻe i nā granulomas, ʻo ia nā nodules inflammatory liʻiliʻi e hiki ke hana i nā ʻāpana like ʻole.

ʻO ka ʻoiaʻiʻo maikaʻi, me ka mālama pono a me ka nānā ʻana, hiki i ka hapa nui o nā kānaka me CVID ke pale a hoʻemi paha i kēia mau pilikia. ʻO ka mālama lapaʻau maʻamau a me ka pale ʻana i nā maʻi he mea nui ia no ka mālama ʻana i ke olakino maikaʻi.

Pehea ka ʻike ʻana o Common Variable Immunodeficiency?

Hoʻomaka ka ʻike ʻana o CVID me kāu kauka e nānā ana i kāu mōʻaukala lapaʻau a me ke ʻano o nā maʻi āu i ʻike ai. Makemake lākou e ʻike e pili ana i ka pinepine, ka nui, a me nā ʻano o nā maʻi āu i loaʻa ai.

Ke ana nui ka ho'āʻo diagnostic i kāu mau pae immunoglobulin ma o kahi ho'āʻo koko maʻalahi. E nānā kāu kauka i nā pae o IgG, IgA, a me IgM - nā ʻano nui o nā antibody e hana ai kou kino. I loko o CVID, emi loa kēia mau pae ma mua o ka maʻamau.

Hiki paha i kāu kauka ke ho'āʻo i ke ʻano o ka pane ʻana o kou ʻōnaehana pale i nā lāʻau. E hāʻawi lākou iā ʻoe i kekahi mau lāʻau a laila e nānā inā hana kou kino i nā antibody ma ke pane. ʻO nā pane antibody maikaʻi ʻole a i ʻole ʻole e kōkua i ka hōʻoia ʻana i ka ʻike.

Hiki i nā ho'āʻo hou ke komo pū me ka nānā ʻana i kāu mau helu a me ka hana o nā sela B a me T. E kōkua kēia mau ho'āʻo i kāu kauka e hoʻomaopopo pono i ke ʻano o ka hoʻopilikia ʻia o kou ʻōnaehana pale a kāpae i nā kūlana ʻē aʻe.

Hoʻomaopopo ʻia kekahi manawa ka ho'āʻo genetic, ʻoi aku hoʻi inā loaʻa iā ʻoe nā lālā ʻohana me nā maʻi palekana. ʻOiai ʻaʻole pono ia no ka ʻike ʻana, hiki iā ia ke hāʻawi i ka ʻike waiwai no ka hoʻolālā ʻohana a me nā hoʻoholo mālama.

He aha ka mālama ʻana no Common Variable Immunodeficiency?

ʻO ka mālama nui no CVID ʻo ia ka immunoglobulin replacement therapy, kahi e hāʻawi ai i kou kino i nā antibody ʻaʻole hiki iā ia ke hana iā ia iho. He mea maikaʻi loa kēia mālama a hiki ke ho'ēmi nui i kāu helu maʻi.

Hiki ke hāʻawi ʻia ka immunoglobulin therapy ma nā ʻano ʻelua. Hāʻawi ʻia ka Intravenous immunoglobulin (IVIG) ma o ka IV i kēlā me kēia 3-4 mau pule, maʻamau ma kahi hale lapaʻau. Hoʻokomo ʻia ka Subcutaneous immunoglobulin (SCIG) ma lalo o ka ʻili i kēlā me kēia pule a i ʻole i kēlā me kēia pule ʻelua a hiki ke hana pinepine ʻia ma ka home.

E hana pū kāu kauka me ʻoe e loaʻa ka nui a me ka papa manawa kūpono. ʻIke ka hapa nui o nā kānaka i ka maikaʻi i loko o kekahi mau mahina o ka hoʻomaka ʻana o ka mālama ʻana, me nā maʻi emi a me nā pae ikehu maikaʻi.

He kuleana nui nā antibiotics i ka mālama ʻana i ka CVID. Hiki i kāu kauka ke kuhikuhi iā lākou i ka hōʻailona mua o ka maʻi a i ʻole ma mua paha inā makemake ʻoe i kekahi mau ʻano maʻi. Loaʻa i kekahi poʻe ka pono mai ka lōʻihi o ka lāʻau antibiotic.

Hiki i nā mālama hou ke komo pū me nā lāʻau lapaʻau e mālama i nā hōʻailona autoimmune inā hoʻomohala lākou. E nānā mau kāu kauka iā ʻoe a hoʻoponopono i nā mālama e like me ka pono e mālama iā ʻoe i ke olakino maikaʻi loa.

Pehea e mālama ai i Common Variable Immunodeficiency ma ka home?

ʻO ke ola maikaʻi me CVID e komo pū ana me ka lawe ʻana i nā hana proactive e pale aku i nā maʻi a mālama i kou olakino holoʻokoʻa. Liʻiliʻi loa nā hana maʻemaʻe i ka wā e pono ai kāu ʻōnaehana pale i ke kākoʻo hou aku.

ʻO ka maʻemaʻe lima kāu laina pale mua. E holoi pinepine i kou mau lima me ka sopa a me ka wai no ka liʻiliʻi o 20 kekona, ʻoi aku hoʻi ma mua o ka ʻai ʻana, ma hope o ka hoʻohana ʻana i ka lumipaku, a ma hope o ka noho ʻana i nā wahi lehulehu.

E mālama i ka lāʻau hou, akā e hana pili me kāu kauka e pili ana i nā mea palekana no ʻoe. ʻO ka hapa nui o nā lāʻau inactivated maikaʻi, akā pale ʻia nā lāʻau ola maʻamau i nā kānaka me CVID.

Eia nā hana hoʻokele home nui:

• E mālama i ka ʻai olakino momona i nā hua, nā mea kanu, a me nā protein liʻiliʻi
• E loaʻa ka hiamoe lawa - e pahuhopu no 7-9 mau hola i ka pō
• E hoʻoikaika maʻamau, akā e pale i ka hoʻoikaika nui
• E mālama i ke kaumaha ma o nā hana hoʻomaha a i ʻole ka ʻōlelo aʻo
• E pale i nā lehulehu i ka wā o ka wā anu inā hiki
• Mai kaʻana like i nā mea pilikino e like me nā hānai niho a i ʻole nā ​​kīʻaha inu

E makaʻala i kou kino a mai hoʻowahāwahā i nā hōʻailona mua o ka maʻi. ʻO ka wikiwiki o ka hoʻomaka ʻana o ka mālama ʻana i nā maʻi, ʻoi aku ka maikaʻi o kāu mau hopena.

Pehea ʻoe e hoʻomākaukau ai no kāu hālāwai kauka?

ʻO ka hoʻomākaukau ʻana no kāu hālāwai e kōkua i ka hōʻoia ʻana e loaʻa iā ʻoe ka mea nui loa mai kāu manawa me kāu mea hāʻawi mālama ola. E hoʻomaka ma ka mālama ʻana i ka moʻolelo kikoʻī o kāu mau hōʻailona, ​​nā maʻi, a me ke ʻano o kou manaʻo i kēlā me kēia lā.

E kākau i nā maʻi āpau āu i loaʻa ai i ka makahiki i hala, me ka wā i loaʻa ai, nā mālama āu i loaʻa ai, a me ka lōʻihi o lākou. E kōkua kēia ʻike i kāu kauka e ʻike i nā ʻano a hoʻoponopono i kāu mālama inā pono.

E lawe mai i ka papa inoa piha o nā lāʻau lapaʻau a me nā mea hoʻohui āu e lawe nei, me nā dosages a me ka pinepine. Mai poina e komo pū me nā lāʻau lapaʻau ma luna o ka counter a me nā huaora.

E hoʻomākaukau i nā nīnau āu e makemake ai e nīnau i kāu kauka. Hiki i nā nīnau maʻamau ke komo pū me nā hopohopo e pili ana i nā hōʻailona hou, nā nīnau e pili ana i nā hoʻoponopono mālama, a i ʻole nā ​​manaʻo no ke ola.

Inā ke ʻike nei ʻoe i ke kauka hou, e lawe mai i nā kope o nā hopena ho'āʻo hou, nā moʻolelo lāʻau, a me ka hōʻuluʻulu o kāu mōʻaukala lapaʻau. E kōkua kēia iā lākou e hoʻomaopopo koke i kāu hihia a hāʻawi i ka mālama maikaʻi.

He aha ka mea nui e pili ana i Common Variable Immunodeficiency?

He kūlana hiki ke mālama ʻia ka CVID ʻaʻole pono e kaohi i kou ola. Me ka mālama pono, hiki i ka hapa nui o nā kānaka me CVID ke ola i nā ola maʻamau, olakino me nā maʻi a me nā pilikia emi nui.

ʻO ka mea nui loa e hoʻomanaʻo ai ʻo ia ka ʻike mua ʻana a me ka mālama mau ʻana e hana i ka ʻokoʻa. He mea maikaʻi loa ka immunoglobulin replacement therapy, a nui nā kānaka i kahaha i ka nui o ka maikaʻi o ko lākou manaʻo ma hope o ka hoʻomaka ʻana o ka mālama ʻana.

ʻO ka hana pili me ka immunologist a i ʻole ka mea loea ʻē aʻe i ʻike i ka mālama ʻana i ka CVID he mea nui. Hiki iā lākou ke kōkua iā ʻoe e hoʻokele i nā koho mālama, pale i nā pilikia, a pane i nā hopohopo e kū mai ana.

E hoʻomanaʻo ʻaʻole ʻo ka loaʻa ʻana o CVID he hōʻailona ʻoe he nāwaliwali a i ʻole palena ʻia. Nui nā kānaka me kēia kūlana e alualu i nā ʻoihana, huakaʻi, hoʻoikaika kino, a hauʻoli i nā hana āpau a lākou e aloha ai. ʻO ke kī ʻo ka noho ʻike, ka hahai ʻana i kāu hoʻolālā mālama, a me ka mālama ʻana i ka kamaʻilio maikaʻi me kāu hui mālama ola.

Nā nīnau pinepine e pili ana i Common Variable Immunodeficiency

Hiki iā ʻoe ke ola i kahi ola maʻamau me CVID?

ʻAe, ola ka hapa nui o nā kānaka me CVID i nā ola piha a hana nui me ka mālama pono. Hiki i ka immunoglobulin replacement therapy ke ho'ēmi nui i nā maʻi, e ʻae ana iā ʻoe e hana, huakaʻi, hoʻoikaika kino, a komo i nā hana āpau āu e hauʻoli ai. ʻO ke kī ʻo ka mālama mau a me ka hana pili me kāu hui mālama ola.

He hereditary anei ka CVID?

Hiki i ka CVID ke holo i nā ʻohana, akā hana ka hapa nui o nā hihia me ka ʻole o ka mōʻaukala ʻohana maopopo. Ma kahi o 10-20% o nā kānaka me CVID he lālā ʻohana me ke kūlana a i ʻole kahi maʻi palekana ʻē aʻe. ʻOiai loaʻa kahi ʻāpana genetic, ʻaʻole hahai ka kūlana i nā ʻano hoʻoilina maʻalahi, no laila ʻaʻole hōʻoia ka loaʻa ʻana o kahi lālā ʻohana me CVID e hoʻomohala ʻoe iā ia.

Pehea pinepine ʻoe e pono ai i nā mālama immunoglobulin?

Hoʻoholo ʻia ka pinepine o ka mālama ʻana ma ke ʻano o ka immunoglobulin therapy āu e loaʻa ai. Hāʻawi ʻia ka IVIG maʻamau i kēlā me kēia 3-4 mau pule ma o ka IV, ʻoiai hāʻawi ʻia ka SCIG i kēlā me kēia pule a i ʻole i kēlā me kēia pule ʻelua ma o nā inikini liʻiliʻi ma lalo o ka ʻili. E hoʻoholo kāu kauka i ka papa manawa maikaʻi loa ma muli o kāu mau pae antibody a me ke ʻano o kāu pane i ka mālama ʻana.

Hiki i ka CVID ke ʻoi aku ka maikaʻi ma hope o ka manawa?

ʻO ka CVID ponoʻī he mea paʻa maʻamau, akā hiki ke hoʻomohala i nā pilikia inā ʻaʻole i mālama pono ʻia nā maʻi ma hope o ka manawa. ʻO ia ke kumu he mea nui ka mālama mau a me ka nānā mau. Me ka mālama pono, mālama ka hapa nui o nā kānaka i ke olakino paʻa a hiki ke ʻike i nā hoʻomaikaʻi i ko lākou mau hōʻailona a me ka maikaʻi o ke ola.

Aia nā meaʻai a i ʻole nā ​​hana e pono ai wau e pale aku me CVID?

ʻAʻole pono ʻoe e hahai i ka ʻai kūikawā, akā ʻo ka mālama ʻana i ka meaʻai maikaʻi e kākoʻo i kou olakino holoʻokoʻa. E pale i nā meaʻai maka a i ʻole nā ​​meaʻai ʻole i hoʻomoʻa ʻia e hiki ke mālama i nā bacteria ʻino, a e makaʻala me nā huahana waiū ʻole i hoʻomaʻemaʻe ʻia. ʻO ka hapa nui o nā hana maʻamau maikaʻi, akā makemake paha ʻoe e pale i nā lehulehu i ka wā o ka wā anu a e hana mau i ka maʻemaʻe maikaʻi.