Ua lohe paha ʻoe i kekahi o kou ʻohana a i ʻole kekahi āu i ʻike ai e ʻōlelo ana he "anemia" lākou? I kekahi manawa luhi mau lākou, ke nānā aku nei ko lākou ʻili i ka mae a me ke kala. He anemia maʻamau paha kēia? ʻAe, ʻaʻole paha he mea maʻamau, he maʻi koko hoʻoilina paha i kapa ʻia ʻo thalassemia. Mai makaʻu i kou lohe ʻana i kēia inoa. ʻAʻole kēia he maʻi lele. E kamaʻilio kākou e pili ana i nā mea āpau me ka maʻalahi a me ka maopopo.
He aha maoli ka thalassemia ?
I ka ʻōlelo maʻalahi, ʻo ka thalassemia kahi maʻi koko i hoʻoilina ʻia mai ko mākou mau mākua mai. ʻO ke kanaka me kēia maʻi, ʻoi aku ka haʻahaʻa o ka hana ʻana o nā hunaola koko ʻulaʻula olakino a me kahi protein i kapa ʻia ʻo hemoglobin .
E noʻonoʻo e pili ana i ia mea, ʻo nā hunaola koko ʻulaʻula ka lawelawe lawe e lawe i ka oxygen ma o ko mākou kino. Ua like ka hemoglobin me kahi pahu kūikawā e hoʻopaʻa ana i kēlā oxygen a lawe iā ia. I loko o ke kanaka me ka thalassemia, ʻaʻole lawa ka nui o kēia mau kaʻa lawe (nā hunaola koko ʻulaʻula) a me nā pahu oxygen (hemoglobin), a i ʻole he hemahema i loko o lākou. No laila, ʻaʻole lawa ka oxygen i nā ʻāpana āpau o ke kino. Kāhea pū mākou i kēia anemia .
He nui nā inoa like ʻole o ka Thalassemia. Ua lohe paha ʻoe i kēia mau inoa:
- ʻAla thalassemia
- ʻO ka Beta thalassemia
- ʻO ka anemia o Cooley
- ʻAʻai koko Mediterranean
Pehea e ulu ai ka thalassemia? ʻO wai ka mea i pilikia?
ʻAʻole ka Thalassemia he maʻi hiki iā kākou ke loaʻa ma o ka meaʻai, ka wai, a i ʻole mai kekahi kanaka ʻē aʻe. He mea ia i hoʻoili ʻia mai nā mākua a i nā keiki ma o nā genes wale nō.
ʻElua mau ʻāpana nui e hana ai i ka protein i kapa ʻia ʻo hemoglobin. ʻO lākou ka alpha globin a me ka beta globin. ʻO ke "meaʻai" no ka hana ʻana i kēia mau mea aia i loko o kā mākou mau genes. Inā he hewa i loko o kēia mau genes (he hewa i loko o ke meaʻai), ʻaʻole hiki i ke kino ke hana i ka hemoglobin olakino e like me ka mea e pono ai.
- Inā hoʻoilina ʻoe i kahi gene kīnā mai hoʻokahi makua wale nō: He mea lawe paha ʻoe. ʻO ke ʻano kēia, ʻaʻohe ou hōʻailona a i ʻole he kakaikahi wale nō, akā hiki iā ʻoe ke hoʻoili i ka gene kīnā i kāu mau keiki.
- Inā hoʻoilina ʻoe i nā ʻiʻo kīnā mai nā mākua ʻelua: Hiki iā ʻoe ke loaʻa i ka thalassemia ʻoluʻolu, kaulike, a koʻikoʻi paha.
ʻIke pinepine ʻia kēia ʻano ma waena o ka poʻe ma nā ʻāina ʻAsia e like me Sri Lanka, ka Hikina Waena, ʻApelika, a me nā ʻāina Mediterranean e like me Helene a me Turkey.
He aha nā ʻano nui o ka thalassemia?
Ua māhele ʻia ka Thalassemia i ʻelua ʻano nui, ma muli o ka ʻāpana o ka haʻilula hemoglobin i hemahema.
| ʻAno Thalassemia | He wehewehe maʻalahi |
|---|---|
| ʻAlepa Thalassemia | Hoʻokumu ʻia ia e kahi kīnā i loko o nā genes e hoʻolilo i ka alpha globin i ʻāpana o ka hemoglobin. Pili kēia i 4 mau genes (2 mai ka makuahine, 2 mai ka makuakāne). ʻO ke koʻikoʻi o ka maʻi e pili ana i ka helu o nā genes kīnā. |
| ʻO ka Beta Thalassemia | Hoʻokumu ʻia ia e kahi kīnā i loko o nā genes e hoʻolilo i ka beta globin i ʻāpana o ka hemoglobin. Pili ia i ʻelua mau genes (hoʻokahi mai ka makuahine a hoʻokahi mai ka makuakāne). Inā hoʻoilina ʻia nā genes kīnā ʻelua, hiki ke hoʻonui ʻia ke koʻikoʻi o ka maʻi. |
Nā ʻAno Alpha Thalassemia
- Ke kūlana mea lawe: Loaʻa iā ia hoʻokahi gene kīnā. ʻAʻohe hōʻailona.
- Alpha Thalassemia Minor: Loaʻa iā ia he 2 mau genes kīnā. ʻAʻohe a i ʻole he mau hōʻailona palupalu loa.
- Maʻi Hemoglobin H: Loaʻa iā ia he 3 mau genes kīnā. Nā hōʻailona waena a koʻikoʻi paha.
- ʻAla Thalassemia Nui: Loaʻa nā ʻano kino kīnā ʻehā. He kūlana koʻikoʻi loa kēia. Make pinepine ka pēpē i loko o ka ʻōpū a i ʻole ma hope koke iho o ka hānau ʻana.
Nā ʻAno Beta Thalassemia
- Beta Thalassemia Minor: Loaʻa iā ia hoʻokahi gene kīnā. ʻAʻohe a i ʻole he mau hōʻailona palupalu loa (kūlana mea lawe).
- Beta Thalassemia Intermedia: Loaʻa iā ia he 2 mau genes kīnā. Nā hōʻailona maʻamau.
- ʻO Beta Thalassemia Nui / Cooley's Anemia: ʻO ke alo ʻana o 2 mau genes kīnā. He ʻano kēia me nā hōʻailona koʻikoʻi loa.
He aha nā hōʻailona o ka thalassemia?
Aia nā hōʻailona i ke ʻano o ka thalassemia āu e loaʻa ai a me kona koʻikoʻi. ʻAʻole paha i loaʻa i kekahi poʻe kekahi mau hōʻailona. I nā ʻano koʻikoʻi, ʻike pinepine ʻia nā hōʻailona ma mua o ka piha ʻana o ke keiki i 2 mau makahiki.
ʻO ka mea nui, ʻaʻole like kēia mau hōʻailona i nā kānaka a pau. Mai manaʻo he thalassemia kou no ka mea he hoʻokahi a ʻoi aku paha o lākou. Inā he kānalua kāu, e ʻike pono i ke kauka.
Eia kekahi o nā hōʻailona maʻamau:
- Luhi nui a me ka luhi
- Paʻakikī ka hanu ʻana , ka wheezing
- Pōʻino a me ka nāwaliwali
- ʻIli keʻokeʻo a melemele paha
- Mimi ʻeleʻele
- Makemake nui
- Ka ulu ʻana o ka ulu ʻana a me ka lohi o ka wā ʻōpiopio i nā keiki
- ʻAno helehelena ʻē (ʻoi aku ka lae a me nā iwi papālina i ʻike nui ʻia)
- ʻŌpū e puka ana (ma muli o ka hoʻonui ʻia ʻana o ke akepaʻa a i ʻole ka spleen)
- ʻEha poʻo pinepine
- Ka nāwaliwali o nā iwi a me ka haki maʻalahi
Pehea ʻoe e ʻike ai inā loaʻa iā ʻoe ka thalassemia?
ʻO ka maʻamau, inā ʻaʻohe ou hōʻailona, hiki ke ʻike ʻia ke ʻano ma kahi hanana i ka wā o kahi hoʻāʻo koko maʻamau i hana ʻia no kekahi kumu ʻē aʻe. Inā loaʻa iā ʻoe nā hōʻailona, e nānā kāu kauka iā ʻoe a nīnau e pili ana i kou mōʻaukala olakino ʻohana.
Ma hope o kēlā, ua ʻōlelo ʻia e hana i kekahi mau hoʻokolohua koko kūikawā, e like me:
- Helu Koko Piha (CBC): Ke ana kēia i ka nui o nā hunaola koko ʻulaʻula a me ka hemoglobin i loko o ke koko. He haʻahaʻa pinepine kēia i nā poʻe maʻi thalassemia.
- Hemoglobin Electrophoresis: Hiki i kēia ke hoʻoholo pono i nā ʻano hemoglobin i loko o kou koko a me ka nui o kēlā me kēia.
- Ka hoʻāʻo ʻana i ka Genetic: Kōkua kēia hoʻāʻo e ʻike pono i ke ʻano o ka thalassemia āu.
ʻIke i ka wā hāpai
Inā he mea lawe thalassemia ʻoe a i ʻole kāu hoa, hiki iā ʻoe ke hoʻāʻo i kāu pēpē no ka maʻi ma mua o ka hānau ʻana o ka pēpē.
- Chorionic Villus Sampling (CVS): Lawe ʻia kahi hāpana liʻiliʻi o ka placenta a hoʻāʻo ʻia ma kahi o 11 mau pule o ka hāpai ʻana.
- Amniocentesis: Ma kahi o 16 mau pule o ka hāpai ʻana, lawe ʻia kahi hāpana o ka wai amniotic e hoʻopuni ana i ka pēpē a hoʻāʻo ʻia.
Inā ʻike ʻia kēia maʻi, e hoʻouna ʻia ʻoe i kahi hematologist.
He aha nā lāʻau lapaʻau no ka thalassemia?
Aia ka lāʻau lapaʻau i ke koʻikoʻi o ke kūlana. ʻAʻole pono paha kekahi lāʻau lapaʻau i ke kanaka me kahi maʻi ʻoluʻolu e like me ka thalassemia minor, akā, pono ka lāʻau lapaʻau no ke ola holoʻokoʻa i nā hihia koʻikoʻi.
ʻO nā ʻano lapaʻau nui:
1. Nā Hoʻoili Koko
Pono nā maʻi me ka thalassemia koʻikoʻi i nā hoʻoili koko e hāʻawi iā lākou i nā hunaola koko ʻulaʻula olakino a me ka hemoglobin. Pono lākou e loaʻa i nā hoʻoili koko i kēlā me kēia 2-4 pule . Hāʻawi kēia iā lākou i ka ikehu e hoʻomau i kā lākou mau hana maʻamau me ka luhi ʻole.
2. Hoʻōla Chelation
Ma muli o ka hāʻawi pinepine ʻana i ke koko a me nā kūlana olakino, hiki ke hoʻonui ʻia ka nui o ka hao i loko o ke kino me ke kumu ʻole. Kāhea mākou i kēia he "Iron Overload." Hiki i kēia hao keu ke hōʻiliʻili i loko o nā ʻōpū koʻikoʻi e like me ka puʻuwai a me ke akepaʻa a hōʻino iā lākou.
No laila, hāʻawi ʻia nā lāʻau lapaʻau kūikawā i nā mea hāʻawi koko e wehe i ka hao keu e hōʻiliʻili ana i loko o ko lākou kino. Ua kapa ʻia kēia ʻo 'Chelation Therapy'. Hiki ke lawe ʻia kēia mau lāʻau lapaʻau ma ke ʻano he pila a i ʻole he inikini.
3. Nā lāʻau lapaʻau ʻē aʻe
- Ka Hoʻoili ʻana o ka Iwi Moa a i ʻole ke Kelepona Kumu: Hiki i kahi hoʻoili ʻana o ka iwi moa mai kahi mea hāʻawi olakino ke ho'ōla loa i ka thalassemia. Eia naʻe, ʻaʻole hana pinepine ʻia kēia ma muli o nā pilikia a me ka paʻakikī o ka loaʻa ʻana o kahi mea hāʻawi kūpono.
- ʻO ke ʻoki kino: Loaʻa i kekahi mau maʻi kahi spleen i hoʻonui ʻia, kahi e pono ai ka wehe ʻana i ke ʻoki kino (splenectomy).
- Nā lāʻau lapaʻau: Hoʻohana ʻia nā lāʻau lapaʻau e like me 'Luspatercept (Reblozyl)' a me 'Hydroxyurea' e kōkua i ka hana ʻana i nā hunaola koko ʻulaʻula a kaohi i nā hōʻailona.
- Nā Mea Hoʻohui: Hiki i kāu kauka ke ʻōlelo aku i nā huaora e like me ka waikawa folic, kahi mea e kōkua ai i ka hana ʻana i nā hunaola koko ʻulaʻula. Eia nō naʻe, mai lawe i nā mea hoʻohui hao me ka ʻole o ka ʻōlelo aʻoaʻo lapaʻau no kekahi kumu.
Pehea e ola kino ai me ka thalassemia?
He mea nui loa ka mālama ʻana i kēia mau mea no ke kanaka e noho nei me ka thalassemia e ola i kahi ola olakino a hauʻoli hoʻi.
- E hahai i nā ʻōlelo a kāu kauka: E hahai pono i ka lāʻau lapaʻau a kāu kauka e like me ke kauoha, i ka manawa kūpono, a e hōʻoia e hele i nā keʻena lapaʻau.
- ʻAi olakino: E ʻai i ka ʻai kaulike me ka nui o nā huaʻai a me nā mea kanu. E nīnau i kāu kauka inā pono ʻoe e kaupalena i nā meaʻai waiwai i ka hao (ʻiʻo, iʻa, legumes) a me nā meaʻai i hoʻonui ʻia i ka hao.
- E kiʻi i ka lāʻau pale: E kiʻi i nā lāʻau pale āpau i ʻōlelo ʻia e kāu kauka, ʻoiai nā mea e like me ka pana maʻi flu, no ka mea, ʻoi aku paha kou pilikia no nā maʻi.
- Hoʻomaʻamaʻa kino:E hoʻoikaika kino māmā e kūpono i kou kino. E kamaʻilio me kāu kauka e pili ana i ia mea.
- Ka Maʻemaʻe: E noho mamao aku mai ka poʻe maʻi. E holoi pinepine i kou mau lima.
- E pale i ka puhipaka a me ka waiʻona: He mea ʻino kēia no kou puʻuwai a me kou mau iwi.
- Ola kino: Hiki i ka noho ʻana me kahi maʻi mau ke hoʻoluhi i ka naʻau. Inā ʻoe e kaumaha a kaumaha paha, e kamaʻilio me ka ʻohana, nā hoaaloha, a i ʻole ke kākāʻōlelo olakino noʻonoʻo .
Leka Lawe-Home
- He maʻi hoʻoilina ka Thalassemia i hoʻoilina ʻia mai nā mākua mai, ʻaʻole ia he maʻi lele.
- Hoʻopilikia kēia i ka hana ʻana o ke kino i ka hemoglobin a me nā ʻula koko ʻulaʻula.
- Hiki ke loli nā hōʻailona mai ka nele i nā hōʻailona a hiki i nā kūlana koʻikoʻi a hoʻoweliweli i ke ola.
- Me ka mālama lapaʻau kūpono (ka hoʻoili koko, ka chelation therapy), hiki i ka hapa nui o nā maʻi ke ola i kahi ola maʻamau a lōʻihi.
- Inā manaʻo ʻoe ua loaʻa iā ʻoe a i ʻole kekahi o kou ʻohana ka thalassemia, e ʻimi pono i ka ʻōlelo aʻoaʻo lapaʻau.
- Ma mua o ka hoʻomaka ʻana i kahi ʻohana, he mea nui loa ia e ʻimi i ke aʻoaʻo genetic e ʻike ai inā he mea lawe ʻoe a i ʻole kāu hoa.
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