Ke loaʻa iā ʻoe kahi ʻoki liʻiliʻi a i ʻole kahi ʻōpala, e kahe ana ke koko liʻiliʻi a kū ma kāna iho, ʻeā? ʻO kēia ma muli o kahi ʻano hana kupaianaha i loko o ko mākou kino. Akā no kekahi poʻe, ʻaʻole kēia e hana. ʻOiai me kahi ʻoki liʻiliʻi, lōʻihi ka manawa e pau ai ko lākou kahe koko, i kekahi manawa ʻaʻole ia e pau iki. ʻO kēia no ka mea ʻaʻole i paʻa pono ko lākou koko. I kēia lā, e kamaʻilio mākou e pili ana i kekahi ʻano maʻi, ʻo Hemophilia B, a me ka lāʻau lapaʻau kikoʻī a hoʻōla ola no ia mea, ʻo Factor IX Complex Injection . ʻOiai he kumuhana paʻakikī kēia, e mālama kākou i ka maʻalahi.
I ka ʻōlelo maʻalahi, he aha kēia Factor IX Complex?
E noʻonoʻo i ko kākou koko he hui liʻiliʻi o nā limahana. Ke loaʻa kahi ʻeha ma kekahi wahi a hoʻomaka ke kahe ʻana o ke koko, hui koke kēia hui o nā limahana e pani i ka ʻeha a hana i kahi "dam" e hoʻōki i ke kahe ʻana o ke koko. Kōkua kēlā me kēia limahana i kēia hana ma kekahi ʻano a i ʻole. Kāhea mākou i kēia mau limahana he mau Clotting Factors .
I kēia manawa, i loko o ke kanaka me ke ʻano i kapa ʻia ʻo Hemophilia B , ʻo ka mea hana helu ʻeiwa (IX) ma kēia hui, ʻo ka protein i kapa ʻia ʻo Factor IX , ua haʻahaʻa loa a ʻaʻohe paha. No laila, me ka ʻole o ia mea, ʻaʻole hiki ke hoʻoponopono pono ʻia kēlā "dam". ʻO ia ke kumu he paʻakikī iā lākou ke hoʻōki i ke kahe ʻana o ke koko.
ʻO kēia kahi e komo mai ai ka lāʻau pale Factor IX Complex . Hāʻawi kēia lāʻau pale i ka Factor IX i nele a i ʻole ka hemahema mai waho o ke kino. He inikini ia i hāʻawi ʻia ma o ka intravenous. Ke komo i loko o ke kino, hoʻomaka hou ke kaʻina hana coagulation koko e hana maʻamau. ʻO ia hoʻi, hiki iā ia ke pale i ke kahe ʻana o ke koko a kāohi i ke kahe ʻana o ke koko e hana nei.
Hiki ke loaʻa kēia lāʻau lapaʻau ma lalo o nā inoa inoa like ʻole ma Sri Lanka. No ka laʻana, hiki iā ʻoe ke ʻōlelo i nā inoa e like me Bebulin lāua ʻo Profilnine. ʻOiai ka inoa o ka lāʻau lapaʻau i hāʻawi ʻia iā ʻoe, aia i loko kēia mea like i kapa ʻia ʻo Factor IX.
Nā mea āu e haʻi aku ai i kāu kauka ma mua o ka lawe ʻana i kēia lāʻau lapaʻau:
He ʻāpana koʻikoʻi loa kēia. He mea nui e haʻi i kāu kauka e pili ana i kou mōʻaukala olakino piha ma mua o ka hoʻomaka ʻana i kēia lāʻau lapaʻau, no ka mea, pono kekahi mau kūlana i ka mālama kūikawā i ka wā e hoʻohana ai i kēia lāʻau.
| Ke kūlana āu e pono ai e hōʻike | No ke aha ʻoe e pono ai e haʻi aku i ke kauka i kēlā? |
|---|---|
| Inā ua loaʻa iā ʻoe nā ʻōpū koko ma mua. | Ma muli o ka hoʻonui ʻana o kēia lāʻau lapaʻau i ke kāpili ʻana o ke koko, hiki ke hoʻonui i ka pilikia no kekahi mea i pilikia mua. Hiki i kāu kauka ke nānā pono i ka nui o ka lāʻau a me ka lāʻau lapaʻau ke ʻike lākou i kēia. |
| Inā ua hana ʻia ʻoe i ke ʻoki kino i hala koke aku nei a ke hoʻolālā nei paha e hana i ke ʻoki kino i ka wā e hiki mai ana. | ʻO ke ʻoki kino kahi manawa e piʻi ai ka pilikia o ke kahe ʻana o ke koko. Aia kekahi pilikia o nā ʻūpā koko. No laila, he mea nui i ke kauka ke makaʻala i kēia. |
| Inā he maʻi puʻuwai kou. | ʻOi aku ka nui o ka pilikia o ka ʻū ʻana o ke koko i ka poʻe me ka maʻi puʻuwai, no laila pono ka mālama kūikawā i ka wā e hoʻohana ai i kēia lāʻau. |
| Inā he maʻi kou akepaʻa. | ʻO ke akepaʻa ka mea e hana ai i ka hapa nui o nā mea hoʻopaʻa koko i loko o ko kākou kino. Pono hoʻi e noʻonoʻo ʻia kēia i ka wā e hāʻawi ai i kēia lāʻau i kekahi me nā pilikia akepaʻa. |
| Inā loaʻa iā ʻoe nā maʻi allergies i ka Factor IX, nā lāʻau lapaʻau ʻē aʻe, nā meaʻai, a i ʻole nā mea hoʻoluʻu. | He mea nui loa kēia. E haʻi i kāu kauka e pili ana i nā maʻi allergies āu e loaʻa nei. Hiki i kēia ke kōkua i ka pale ʻana i kahi hopena allergies koʻikoʻi. |
| Inā ʻoe e hāpai ana a i ʻole e hoʻāʻo ana e hāpai. | Pono e hoʻohana pono ʻia kekahi lāʻau lapaʻau i ka wā hāpai. Pono ʻoe e noʻonoʻo e pili ana i nā hopena hiki ke loaʻa i ka pēpē. No laila, pono ʻoe e hoʻomaopopo i kāu kauka e pili ana i kēia. |
| Inā he makuahine hānai waiū ʻoe. | He mea nui e ʻike inā e hele ka lāʻau lapaʻau i ka pēpē ma o ka waiū umauma. No laila e hōʻoia e haʻi i kāu kauka e pili ana i kēia. |
Pehea e hoʻohana ʻia ai kēia lāʻau pale?
Hāʻawi ʻia kēia lāʻau lapaʻauHāʻawi ʻia ia ma ke ʻano he infusion intravenous. Hāʻawi pinepine ʻia kēia iā ʻoe e nā limahana lapaʻau ma kahi haukapila a i ʻole ke keʻena lapaʻau. Eia nō naʻe, i kekahi mau hihia, ʻoi aku hoʻi no ka poʻe e mālama ʻia ana no ka manawa lōʻihi, hiki ke hoʻomaʻamaʻa ʻia ʻoe e loaʻa i kēia injection ma ka home.
Inā pono ʻoe e hoʻohana i kēia lāʻau lapaʻau ma ka home, e loaʻa iā ʻoe ke aʻo piha. E aʻo ʻia ʻoe pehea e kāwili ai i ka ʻōmole pauka a me ka ʻōmole wai sterile, pehea e hoʻokomo ai i ka nila i loko o ke aʻa, a pehea ka wikiwiki e hoʻokomo ai i ka lāʻau lapaʻau i loko o kou kino. E hahai pono i kēia mau kuhikuhi.
He aha kāu e hana ai me nā nila a me nā syringe i hoʻohana ʻia?
He mea nui loa kēia. Mai hoʻolei i nā nila a me nā syringe i hoʻohana ʻia i loko o ka ʻōpala . ʻO ka hana ʻana pēlā e hiki ai ke hōʻeha nui i ka mea hōʻiliʻili ʻōpala a i ʻole nā mea ʻē aʻe, me nā maʻi i lawe ʻia e ke koko.
Aia kahi pahu ʻoi kūikawā hiki iā ʻoe ke hoʻohana e waiho i kēia mau mea. Inā ʻoe e mālama ʻia ana ma ka home, e nīnau i kāu hui mālama ola kino e pili ana i ke ʻano o ka loaʻa ʻana o hoʻokahi. E hāʻawi pū lākou iā ʻoe i nā kuhikuhi no ka hoʻolei ʻana me ka palekana ke piha.
Hiki ke hāʻawi ʻia kēia lāʻau lapaʻau i nā keiki?
ʻAe, hāʻawi ʻia kēia lāʻau lapaʻau i nā keiki inā pono. Akā hana ʻia me ke akahele nui a e like me ke aʻo lapaʻau kūikawā.
He aha inā lawe nui wau i ka lāʻau lapaʻau?
Inā manaʻo ʻoe ua ʻai ʻoe i nā lāʻau lapaʻau ma mua o kou manaʻo, e hele koke i ka Halemai Pilikia (ETU) kokoke loa. A i ʻole e kelepona i ke Kikowaena ʻIke Lāʻau Lapaʻau Lahui ma ka Halemai Lahui ʻo Colombo no ka ʻōlelo aʻoaʻo.
E hoʻomanaʻo, ua kuhikuhi ʻia kēia lāʻau lapaʻau nou wale nō. Mai kaʻana like me kekahi.
He aha kāu e hana ai inā e poina ʻoe i kahi mahele o ka lāʻau lapaʻau?
He mea nui loa ka lawe ʻana i kāu lāʻau lapaʻau i ka manawa kūpono, ʻoiai inā ʻoe e lawe ana ia mea e pale aku i ke kahe ʻana o ke koko (prophylaxis). Inā ʻoe e poina i kahi lāʻau, mai hopohopo a kāhea koke aku i kāu kauka a i ʻole ka hui lapaʻau no ka ʻōlelo aʻoaʻo no ka mea e hana ai ma hope. E haʻi lākou iā ʻoe inā e lawe i ka lāʻau i poina a i ʻole e lawe i ka lāʻau aʻe i ka manawa i hoʻonohonoho ʻia.
He aha nā mea ʻē aʻe e hiki ke launa pū me kēia lāʻau lapaʻau?
Hiki i kekahi mau lāʻau lapaʻau ke launa pū me kēia lāʻau pale Factor IX Complex. Eia kekahi laʻana,
- ʻAkika Aminocaproic
- ʻAkika Tranexamic
Ua like kēia mau lāʻau lapaʻau me nā lāʻau lapaʻau ʻē aʻe e kōkua ai i ke kāpili ʻana o ke koko. ʻO ka hoʻohana pū ʻana i kēia mau mea e hoʻonui paha i ka pilikia o nā kāpili koko.
Akā, ʻaʻole i piha kēia papa inoa. No laila, ʻo nā lāʻau lapaʻau ʻē aʻe āu e lawe aiE haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau (i kauoha ʻia e nā kauka no nā kūlana ʻē aʻe), nā huaora , nā mea hoʻohui meaʻai , nā lāʻau Ayurvedic a i ʻole nā lāʻau lapaʻau lāʻau āu e lawe nei. E haʻi pū i kāu kauka inā ʻoe e puhipaka a inu waiʻona paha. A laila hiki i kāu kauka ke hana i ka hoʻolālā lapaʻau palekana loa nāu.
Nā mea āu e makaʻala nui ai i ka wā e lawe ai i ka lāʻau lapaʻau
- Nā nānā lapaʻau maʻamau: E hoʻomau i ka launa pū ʻana me kāu kauka e ʻike i ka maikaʻi o kāu lāʻau lapaʻau. E hele i nā keʻena lapaʻau i nā lā i hoʻonohonoho ʻia. E haʻi i kāu kauka inā ʻaʻole e hoʻomaikaʻi kāu mau hōʻailona a i ʻole e ʻoi aku ka ʻino.
- Nā hoʻāʻo koko: I ka wā o ka mālama ʻana, pono paha ʻoe e loaʻa nā hoʻāʻo koko e nānā i kāu mau pae Factor IX a me nā mea ʻē aʻe i loko o kou koko.
- Kumu o ka lāʻau lapaʻau: He nīnau kēia a ka poʻe he nui. Hana ʻia kekahi mau huahana Factor IX mai ka plasma koko i hāʻawi ʻia e nā kānaka . Ma muli o kēia, hiki ke hopohopo e pili ana i nā maʻi e like me ka hepatitis a i ʻole HIV hiki ke hoʻoili ʻia ma o kēlā koko. Eia nō naʻe, me ka ʻenehana o kēia manawa, hana ʻia kēia mau huahana me ka hoʻohana ʻana i nā kaʻina hana hoʻomaʻemaʻe koʻikoʻi loa e pepehi i nā maʻi a i ʻole nā bacteria e loaʻa paha. No laila, he liʻiliʻi loa ka pilikia o ka maʻi. Inā he mau nīnau hou kāu e pili ana i kēia, mai kānalua e kamaʻilio me kāu kauka.
- E makaʻala me nā lāʻau ʻeha: He mea kēia e pono ai ʻoe e hoʻomanaʻo. E pale i ka hoʻohana ʻana i nā lāʻau ʻeha e like me Aspirin, Ibuprofen, a me Naproxen . Hoʻonui kēia mau lāʻau i ka pilikia o ke kahe ʻana o ke koko. Inā loaʻa iā ʻoe ke kuni a ʻeha paha ke kino, e nīnau i kāu kauka e pili ana i ka hoʻohana ʻana iā Paracetamol .
- Kāleka ID lapaʻau a kūpeʻe lima paha: He manaʻo maikaʻi e lawe i kahi kāleka a kūpeʻe lima paha me ka ʻike e pili ana i kou kūlana (he Hemophilia B kou), nā lāʻau lapaʻau āu e lawe ai, a me nā dosages. He kōkua nui kēia i ka poʻe e mālama ana iā ʻoe i ka wā o kahi pilikia, e like me kahi ulia.
He aha nā hopena ʻaoʻao e hiki mai ana?
E like me nā lāʻau lapaʻau āpau, hiki i kēia ke hana i nā hopena ʻaoʻao i kekahi poʻe. Akā, ʻaʻole loaʻa i nā kānaka a pau. E nānā kākou i kēia mau hopena ʻaoʻao a me ka mea e hana ai inā loaʻa.
| ʻAno o ka hopena ʻaoʻao | Nā hōʻailona |
|---|---|
| Inā ʻike ʻoe i kēia mau hōʻailona, e hoʻomaopopo koke i kāu kauka a i ʻole ka haukapila. | |
| Nā hopena alerika koʻikoʻi | ʻŌhūhū ʻili, maneʻo, ʻulaʻula, pehu o ka maka, nā lehelehe, ke alelo a i ʻole ka puʻu, paʻakikī ke hanu. |
| ʻAʻa koko | ʻEha wāwae, pehu a mehana paha, paʻakikī ka hanu ʻana, ʻeha umauma. |
| ʻAʻole maʻamau kēia mau mea koʻikoʻi, akā inā hoʻomau lākou, e haʻi i kāu kauka. | |
| Luhi | Ka manaʻo o ka luhi loa a me ka luhi. |
| Ka holoi ʻana | Lilo ka ʻāpana o ka maka a me ka ʻāʻī i ʻulaʻula a mehana hoʻi. |
| ʻEha poʻo | ʻEha poʻo maʻamau. |
| Ka luaʻi | Manaʻo e luaʻi ana. |
| ʻEha ma kahi i hoʻokomo ʻia | ʻEha, ʻulaʻula, a pehu iki paha ma kahi i inikini ʻia. |
Aia i loko o kēia papa inoa kekahi mau hopena ʻaoʻao. Inā loaʻa iā ʻoe kekahi mea ʻē, e kelepona koke aku i kāu kauka.
Pehea ʻoe e mālama ai a hoʻolei aku i ka lāʻau lapaʻau?
- Ka Mālama ʻana: E hāʻawi aku kāu hui lapaʻau iā ʻoe i nā ʻōlelo aʻoaʻo maopopo no ka mālama ʻana i kēia lāʻau. Pono kekahi e hoʻokomo i loko o ka pahu hau, a hiki ke mālama ʻia kekahi ma ka mahana o ka lumi. E hahai pono i kēlā mau ʻōlelo aʻoaʻo. E mālama iā ia mai ka hiki ʻana aku o nā keiki a me nā holoholona.
- Ka Hoʻolei ʻana: Pono e hoʻolei palekana ʻia nā lāʻau lapaʻau i pau ka lā a ʻaʻole pono hou. Mai hoʻolei iā lākou i loko o kāu ʻōpala maʻamau. E nīnau i kāu kauka a i ʻole ka hui lapaʻau e pili ana i ke ʻano o ka hoʻolei ʻana iā lākou me ka palekana.
Leka Lawe-Home
- He lāʻau lapaʻau hoʻōla ola ka lāʻau pale Factor IX Complex e pale a kaohi i ke kahe ʻana o ke koko i nā poʻe me ka hemophilia B ma o ka hāʻawi ʻana i ka mea hoʻopaʻa koko hemahema (Factor IX) ma waho.
- Ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau, e hōʻoia e haʻi i kāu kauka e pili ana i kou mōʻaukala olakino piha, nā lāʻau lapaʻau ʻē aʻe āu e lawe nei, a me nā maʻi allergies āu e loaʻa ai.
- Inā ʻoe e mālama ʻia ana ma ka home, e hoʻolei pono i nā mea e like me nā nila a me nā syringe (i loko o kahi Pahu Sharps). Mai hoʻolei iā lākou i loko o ka ʻōpala.
- Inā loaʻa iā ʻoe kekahi mau hopena koʻikoʻi e like me ka paʻakikī o ka hanu ʻana, ka pehu ʻana o ka maka, ka ʻeha o ka umauma, a i ʻole ka pehu ʻana o nā wāwae, e ʻimi koke i ke kōkua lapaʻau.
- Mai lawe i nā lāʻau ʻeha e like me ka aspirin a i ʻole ibuprofen me ka ʻole o ke kūkākūkā ʻana me kāu kauka. Palekana ka Paracetamol no ka ʻeha a i ʻole ke kuni.
- Inā he mau nīnau kāu e pili ana i kāu lāʻau lapaʻau a lāʻau lapaʻau paha, mai makaʻu e nīnau i kāu kauka. ʻO ka nui o kou ʻike e pili ana i kou kūlana, ʻo ka maʻalahi hoʻi iā ʻoe ke mālama iā ia.
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