Ke luhi mau nei ʻoe a palaualelo? Malia paha he keʻokeʻo iki kou ʻili? A i ʻole ua loaʻa i kekahi o kou ʻohana kahi maʻi koko? A laila ʻo kaʻu e haʻi aku nei iā ʻoe he mea nui loa ia nou. I kēia lā e kamaʻilio mākou e pili ana i kahi maʻi koko i kapa ʻia ʻo Hemoglobinopathy, nona kahi inoa paʻakikī, akā ʻike ʻia i nā poʻe he nui. Mai hopohopo, e kamaʻilio maʻalahi mākou e pili ana i kēia.
He aha ka Hemoglobinopathy? E ʻike pono kākou!
I ka ʻōlelo maʻalahi, ʻo nā hemoglobinopathies he hui o nā maʻi hoʻoilina e hoʻopilikia ana i ka protein i loko o ko mākou koko i kapa ʻia ʻo hemoglobin. I kēia manawa ke noʻonoʻo nei paha ʻoe i ke ʻano o kēia hemoglobin, ʻeā?
E noʻonoʻo i kēia ʻano: ua like ka hemoglobin me kahi koa liʻiliʻi i loko o ko kākou mau hunaola koko ʻulaʻula. ʻO ia ka mea e lawe i ka oxygen mai ko kākou mau māmā ke hanu kākou a hoʻolaha iā ia ma loko o ko kākou kino. Hana ia e like me kahi kaʻa oxygen. No laila, inā ʻaʻole i hana pono ʻia kēia hemoglobin, a inā ʻaʻole i hana lawa ʻia, ʻaʻole lawa ka oxygen i ko kākou kino. ʻO ia ka manawa e hoʻomaka ai nā pilikia.
He maʻi hoʻoilina kēia, ʻo ia hoʻi, ua hoʻokumu ʻia e kahi loli o nā genes a mākou e hoʻoilina ai mai ko mākou mau mākua. He miliona miliona ka poʻe a puni ka honua e ʻeha nei i kēia maʻi. ʻO ka ʻoiaʻiʻo, ʻo ia ke ʻano maʻamau o ka maʻi koko hoʻoilina. Ua ʻike nā kānaka noiʻi ma mua o 600 mau ʻano hemoglobinopathies!
Ke hana ko kākou kino i ka hemoglobin kūpono ʻole, a i ʻole ʻaʻole lawa, hiki ke loaʻa nā hōʻailona e like me ka ʻeha o ke kino, ka luhi, a me ka hōʻino ʻana i nā ʻano kino like ʻole . ʻO ia ke kumu he mea nui e ʻike mua iā ia. ʻO ia ke kumu e hoʻāʻo ai nā kauka i nā pēpē no ka hemoglobinopathy i ka wā e hānau ai lākou.
ʻO ka mea nui , ʻaʻole hiki ke ho'ōla loa ʻia ʻo Hemoglobinopathy. Eia nō naʻe, me ka mālama pono ʻana, hiki iā mākou ke kāohi i nā hōʻailona a pale i nā pilikia.
He aha nā ʻano hemoglobinopathies i loaʻa?
E like me kā mākou i ʻōlelo ai ma mua, he mau haneli o nā ʻano o kēia. Hoʻohana pinepine ʻia kēia mau ʻano me nā leka Pelekania. Pili nā leka i nā ʻano like ʻole o ka protein hemoglobin a me ke kaʻina i ʻike ai nā mea noiʻi iā lākou. Kōkua kēia i nā kauka e hoʻomaopopo i ka ʻokoʻa genetic pololei i pili.
Eia kekahi o nā ʻano hemoglobinopathy maʻamau:
- Maʻi Hemoglobin C: ʻO kēia kahi e pani ʻia ai ka hemoglobin maʻamau e kahi ʻano i kapa ʻia ʻo hemoglobin C.
- Maʻi Hemoglobin E: Maanei, ua pani ʻia ka hemoglobin maʻamau e ka hemoglobin E.
- Maʻi Hemoglobin D: Maanei, ua pani ʻia ka hemoglobin maʻamau e ka hemoglobin D.
- ʻO ka maʻi Hemoglobin SC:Hiki mai kēia kūlana inā hoʻoilina ʻoe i hoʻokahi gene cell sickle a me hoʻokahi gene hemoglobin C.
- Maʻi Hemoglobin SD: Maanei, hoʻoilina ʻia kekahi gene cell sickle a me hoʻokahi gene hemoglobin D.
- Maʻi Hemoglobin SE: Maanei, hoʻoilina ʻia kekahi gene cell sickle a me hoʻokahi gene hemoglobin E.
- Maʻi ʻeha koko: Ma kēia ʻano, lilo kou mau hunaola koko ʻulaʻula i ʻano ʻeha koko. Pale kēia iā lākou mai ka neʻe maʻalahi ʻana ma o nā kīʻaha koko a hiki ke hoʻopaʻa ʻia.
- Thalassemias: Ma kēia kūlana, ʻaʻole hana kou kino i ka hemoglobin lawa.
He mea paʻakikī iki paha kēia, akā hiki i ke kauka ke wehewehe hou aku iā ʻoe.
He aha nā hōʻailona o kēia? E nānā inā loaʻa iā ʻoe kēia mau mea pū kekahi...
ʻOkoʻa nā hōʻailona o ka hemoglobinopathy mai kēlā me kēia kanaka, akā aia kekahi mau hōʻailona maʻamau:
- Nā lima a me nā wāwae anu
- ʻEleʻele ka mimi (ka pouli ʻana)
- Luhi pinepine
- Ka lohi o ka ulu ʻana o nā keiki
- Melemele o ka ʻili a me nā maka (Jaundice)
- ʻIli keʻokeʻo
- Paʻakikī ka hanu ʻana, ka wheezing
- Hiamoe nui aʻe ma mua o ka maʻamau
- Ka pehu ʻana o nā lālā
Hiki i nā pēpē me ka hemoglobinopathy koʻikoʻi ke hōʻike i nā hōʻailona i ka wā hānau. I kekahi manawa, ʻike ʻia nā hōʻailona i ka wā kamaliʻi. I nā pākeke, hiki i kēia mau hōʻailona ke lilo i mea koʻikoʻi i ka wā o ka hoʻonui ʻia ʻana o ka maʻi (e like me ka pilikia cell sickle).
No ke aha e kū mai ai kēia ʻano hemoglobinopathy?
ʻO ke kumu nui o kēia, aia kahi ʻano like ʻole o ka gene e hoʻopilikia i kou hemoglobin. Hiki iā ʻoe ke loaʻa i kēia ʻano like ʻole o ka genetic mai kou makuahine, kou makuakāne, a i ʻole nā mea ʻelua. ʻO ke ʻano kēia, ʻaʻole kēia he mea hiki iā mākou ke kaohi, he mea ia e loaʻa mai ka hoʻoilina.
ʻO wai ka mea i ʻoi aku ka paʻakikī o ka loaʻa ʻana o kēia? (Nā kumu pilikia)
ʻOi aku ka nui o ka loaʻa ʻana o kēia hemoglobinopathy i kekahi poʻe. E nānā kākou iā lākou:
- Inā no ʻApelika, Kaiwaenahonua, Hikina Hema ʻĀkia, a i ʻole Komohana ʻĀkia kou kūpuna. (Hiki ke ʻike ʻia kēia mau kūlana ma Sri Lanka)
- Inā loaʻa i kou makuahine, makuakāne, a kaikaina paha ka hemoglobinopathy.
- Inā ʻoe e noho ana ma kahi i hana mau ʻole ʻia ai ka nānā ʻana i ka hemoglobinopathy no nā keiki hānau hou.
Inā loaʻa iā ʻoe ka hemoglobinopathy, aia kahi manawa e loaʻa pū ai i kāu keiki ka maʻi. No laila, he mea nui loa e ʻimi i ke aʻo lapaʻau ma mua o ka hoʻomaka ʻana i kahi ʻohana.
He aha nā pilikia e hiki ai i kēia ke hana?
Inā ʻaʻole i kāohi pono ʻia ka hemoglobinopathy, hiki ke loaʻa nā pilikia like ʻole. ʻO kekahi o lākou:
- Anemia: Hiki i kekahi ʻano hemoglobinopathy ke hana i ka anemia, hiki ke alakaʻi i ka emi ʻana o nā hunaola koko ʻulaʻula. Hiki i kēia ke alakaʻi i ka luhi a me ka nāwaliwali.
- Nā maʻi pinepine: Hiki i ka Hemoglobinopathy ke alakaʻi i kahi ʻōnaehana pale i hoʻopilikia ʻia , kahi e hoʻonui ai i ka pilikia o ka maʻi a me ka maʻi.
- Poino kino: ʻO ka Hemoglobinopathy ke kumu o ka emi ʻana o nā pae oxygen i loko o ke koko. Ke hāʻawi ʻole ʻia ke koko waiwai i ka oxygen i loko o kekahi manawa, hiki ke hōʻino ʻia ko kākou mau ʻiʻo a me nā kino.
- Nā ʻeha ʻeha: I kekahi mau ʻano hemoglobinopathies, e like me ka maʻi sickle cell, hiki i nā ʻūpā koko ke hana i loko o nā kīʻaha koko a ālai iā lākou. Hiki i kēia ke alakaʻi i ka ʻeha nui a me ka emi ʻana o ke kahe koko.
Pehea ʻoe e ʻike pololei ai i kēia maʻi? (Diagnosis)
Hana nā kauka i kekahi mau hoʻokolohua e hoʻoholo pono ai inā he hemoglobinopathy kou.
- Helu koko piha (CBC): ʻO kēia ka hoʻāʻo koko mua i hana ʻia. Hiki iā ia ke haʻi iā ʻoe e pili ana i nā ʻano o nā cell i loko o kou koko, ʻo ia hoʻi, ka nui o kēlā me kēia ʻano cell āu.
- Ka hoʻāʻo ʻana i ka genetic: Hiki i kēia hoʻāʻo ke ʻike pololei i nā loli genetic e pili ana.
- Hemoglobin electrophoresis: Hoʻokaʻawale kēia hoʻāʻo i nā mole hemoglobin mai kahi hāpana o kou koko a nānā i nā mea ʻē.
- Nā haʻawina hao: Hiki ke hana i kēia hoʻāʻo e ʻike ai inā he anemia nele i ka hao kou.
- Nānā ʻana i nā pēpē hānau hou: Ma nā ʻāina he nui e like me Kanada a me ʻAmelika, nānā ʻia nā pēpē hānau hou no ka hemoglobinopathy. Loaʻa i kekahi mau haukapila ma Sri Lanka kēia hale hana.
- Ka hoʻāʻo ʻana ma mua o ka hānau ʻana: Hiki ke hoʻohana ʻia kēia hoʻāʻo e hoʻoholo ai inā loaʻa ka hemoglobinopathy i ka fetus i ka wā hāpai.
He aha nā lāʻau lapaʻau?
Aia kekahi mau lāʻau lapaʻau no ka hemoglobinopathy, akā ʻokoʻa kēia mau lāʻau lapaʻau ma muli o ke ʻano a me ke koʻikoʻi o ka maʻi.
- Nā hoʻoili koko: ʻO kekahi mau maʻi, e like me ka thalassemia a me ka maʻi sickle cell, e hoʻopilikia i ka nui o ka hemoglobin i loko o ke koko. Pono paha nā hoʻoili koko e mālama i nā pae hemoglobin maʻamau.
- Nā papa waikawa Folic: Hiki i kēia ke kōkua i ka hoʻonui ʻana i ka hana ʻana o nā cell koko ʻulaʻula.
- Ka lāʻau lapaʻau gene:He lāʻau lapaʻau hou kēia. Lawe nā kānaka ʻepekema i nā ʻāpana i hoʻopilikia ʻia mai kou kino, hoʻoponopono iā lākou me ka hoʻohana ʻana i nā ʻano hana kūikawā, a laila hoʻihoʻi hou iā lākou i loko o kou kino. Ua like ia me ke kākau hou ʻana i nā kuhikuhi i loko o kāu mau genes.
- Lapaʻau chelation hao: Inā nui loa ka hao i loko o kou kino, hiki i kēia lāʻau ke wehe i ka hao keu. Hāʻawi ʻia kēia lāʻau lapaʻau ma ka waha a i ʻole ma ke ʻano he inikini.
- Lapaʻau oxygen: Hiki i kāu kauka ke ʻōlelo aku i ka lāʻau oxygen me nā lāʻau ʻē aʻe. ʻO ka pahuhopu o kēia, ʻo ia ka hoʻonui ʻana i nā pae oxygen i loko o kou koko a hoʻēmi i ka ʻeha.
- Hoʻoili ʻana i nā pūnaewele kumu: Pili kēia i ka hoʻololi ʻana i nā hunaola koko ʻulaʻula maʻamau me nā hunaola koko ʻulaʻula olakino. Eia naʻe, ʻaʻole maʻamau loa kēia, no ka mea, he paʻakikī ke loaʻa kahi mea hāʻawi kūpono. Loaʻa pū kekahi i ka pilikia o ka maʻi graft-versus-host (GvHD) .
E hoʻomanaʻo, ma muli o ke ʻano o ka hemoglobinopathy āu e loaʻa ai, ʻaʻole paha ʻoe e pono i kekahi lāʻau lapaʻau. No laila ʻoi aku ka maikaʻi o ke kamaʻilio ʻana me kāu kauka a nīnau i ka mea maikaʻi loa iā ʻoe.
ʻEhia ka manawa e ʻoi aku ai koʻu maikaʻi ma hope o ka lāʻau lapaʻau?
Aia maoli nō ia i ke ʻano o ka hemoglobinopathy āu e loaʻa ai a me kona koʻikoʻi. Hoʻomaka ka hapa nui o ka poʻe e ʻoluʻolu i loko o kekahi mau pule a i ʻole mau mahina o ka hoʻomaka ʻana o ka lāʻau.
He maʻi ola ka Hemoglobinopathy, no laila pono ʻoe i nā hoʻokolohua lapaʻau maʻamau a me ka nānā ʻana. E kōkua kāu kauka iā ʻoe e hoʻokele i kāu mau hōʻailona.
He aha ka mea e hiki mai ana no ka poʻe e ola nei me kēia maʻi?
Me ka mālama kūpono, hiki i kou wā e hiki mai ana ke mālamalama. ʻOi aku ma mua o 90% o ka poʻe me ka hemoglobinopathy e ola a hiki i ka wā makua.
Eia nō naʻe, inā ʻaʻole mālama ʻia, hiki i nā ʻano hemoglobinopathies he nui ke alakaʻi i ka make i loko o nā makahiki mua o ke ola. No laila, ʻo ka ʻike mua a me ka mālama ʻana ke ala maikaʻi loa e pale aku ai i nā pilikia koʻikoʻi.
ʻAʻole anei hiki ke pale ʻia kēia?
ʻO ka mea pōʻino, ʻaʻole. ʻOiai ʻo ka hemoglobinopathy kahi mea āu e hoʻoilina ai, ʻaʻohe ala e pale aku ai. Eia nō naʻe, hiki iā mākou ke hoʻokele i nā hōʻailona me ka mālama kūpono.
Pehea wau e mālama ai iaʻu iho?
Hiki ke paʻakikī ka noho ʻana me ka hemoglobinopathy, akā inā mālama pono ʻoe iā ʻoe iho, hiki iā ʻoe ke hōʻemi i ka pilikia o ka ʻeha a me nā hopena ʻē aʻe.
Eia kekahi mau ʻōlelo aʻoaʻo laulā e hiki ke kōkua iā ʻoe:
- E inu i ka nui o ka wai. E ho'āʻo e inu ma ka liʻiliʻi he 2-3 lita o ka wai i ka lā.
- E hana kino, akā, mai hana nui. E hoʻolohe i kou kino. Inā luhi ʻoe, e hoʻomaha.
- E ʻai i nā meaʻai waiwai i ka hao, nā wikamina, a me nā minelala. E hoʻokomo i nā greens, nā huaʻai, nā mea kanu, ka ʻiʻo, a me ka iʻa i kāu papaʻai.
- E hoʻokele i kou kaumaha. E hoʻohana i ka noʻonoʻo ʻana, yoga, a i ʻole nā ʻano hana noʻonoʻo ʻē aʻe āu e hauʻoli ai.
- E holoi pinepine i kou mau lima. Kōkua kēia i ka pale ʻana iā ʻoe mai nā maʻi.
Āhea wau e ʻike ai i ke kauka?
Inā loaʻa iā ʻoe nā hōʻailona e like me ka luhi nui, ka paʻakikī o ka hanu ʻana, a i ʻole ka ʻili keʻokeʻo, e ʻike pono i ke kauka a haʻi iā lākou e pili ana i ia mea.
Inā ua ʻike mua ʻia ʻoe me ka hemoglobinopathy, e ʻike koke i kāu kauka inā hoʻi hou mai kāu mau hōʻailona a i ʻole e ʻoi aku ka ʻino. Hiki iā ia ke hoʻololi i kāu lāʻau lapaʻau.
He aha nā nīnau āu e nīnau ai i ke kauka?
Inā loaʻa iā ʻoe a i ʻole kāu keiki ka hemoglobinopathy, he mea maikaʻi e nīnau i kāu kauka i kēia mau nīnau:
- He aha ke ʻano o ka hemoglobinopathy i loaʻa iaʻu/i kaʻu keiki?
- He aha ke ʻano o ka lāʻau lapaʻau āu e paipai nei?
- Pono anei au e ʻike i nā loea ʻē aʻe no ka mālama ʻana?
- Pono anei au e hoʻololi i kaʻu ʻai a i ʻole nā hana hoʻoikaika kino?
- He aha ka likelika e loaʻa ai i kaʻu mau keiki kēia maʻi?
- Loaʻa iā ʻoe kekahi ʻike hou aku e pili ana i kēia? (e.g. nā puke, nā pūnaewele)
I ka manawa hea ʻoe e pono ai e hele i ka Emergency Treatment Unit (ETU) ?
Inā loaʻa iā ʻoe kekahi o kēia mau hōʻailona, e kelepona i ka 911 (1990 ma Sri Lanka) a i ʻole e hele koke i ka lumi pilikia kokoke loa:
- ʻEha umauma
- Pōʻino
- Ke kuni kiʻekiʻe aʻe ma mua o 103 degere Fahrenheit (39.4 degere Celsius)
- ʻEha nui ʻaʻole e emi iho me ka lawe ʻana i ka lāʻau lapaʻau
- Nā hōʻailona o ka hahau ʻana, no ka laʻana, ka nalowale koke o ka ʻike, ka paʻakikī o ka ʻōlelo ʻana.
Pehea ka hopena o ka hemoglobinopathy i koʻu A1C?
Hiki i ka Hemoglobinopathy ke hana i kāu mau hopena hoʻāʻo A1C i hewa. Ma muli o kāu ʻano genetic, hiki ke hōʻike i kahi waiwai haʻahaʻa a kiʻekiʻe paha ma mua o kāu i loaʻa maoli.
Inā loaʻa iā ʻoe ka hemoglobinopathy, hiki i kāu kauka ke ʻōlelo aku i kahi hoʻāʻo e hiki ke kōkua i ka hōʻemi ʻana i kēia pilikia. He mea nui loa kēia A1C no ka poʻe me ka maʻi diabetes, no laila mai poina e kamaʻilio pū me kāu kauka e pili ana i kēia.
ʻO ka mea hope loa, nā mea nui e hoʻomanaʻo!
He mea maʻamau ka makaʻu a me ka hopohopo ke lohe ʻoe he maʻi koko ko ʻoe a i ʻole kāu keiki no ke ola holoʻokoʻa. Hiki ke kū mai nā nīnau e like me "Pehea e pili ai ka hemoglobinopathy i koʻu ola?", "E ʻeha mau anei au?", "Pehea e pili ai kēia maʻi i kaʻu keiki?" i loko o kou manaʻo.
Akā ʻo ka nūhou maikaʻi , me ka mālama pono ʻana a me ka kaohi ʻana i nā hōʻailona, hiki iā ʻoe ke ola olakino e like me ka hiki.ʻO ka mea maikaʻi loa hiki iā ʻoe ke hana, ʻo ia ke kamaʻilio me kāu kauka. Mai hoʻokaʻulua. ʻO ka ʻike mua ʻana a me ka mālama ʻana nā kī i kahi ola lōʻihi a olakino hoʻi.
Mai hopohopo, ʻaʻole ʻoe hoʻokahi. E kōkua nā kauka, nā kahu maʻi, a me kou ʻohana iā ʻoe ma kēia huakaʻi. E wiwo ʻole!
ʻO ka Hemoglobinopathy, nā maʻi koko, nā maʻi hoʻoilina, hemoglobin, anemia, maʻi cell sickle, thalassemia
💬 Comments (0)
ʻAʻohe manaʻo i kau ʻia. Hoʻohui i kāu manaʻo ma ʻaneʻi no ka manawa mua.
Hoʻohui i kāu manaʻo