Ke kahe pinepine nei ke koko ihu? A i ʻole he mau kiko ʻulaʻula liʻiliʻi kou ma kou ʻili, ʻoi aku hoʻi ma kou maka, lehelehe, a me nā manamana lima? Malia paha ua loaʻa i kou makuahine, kou makuakāne, a i ʻole kekahi o kou ʻohana kēia mau pilikia. ʻAʻole paha mākou e nānā nui i kēia mau mea, me ka ʻōlelo ʻana, "ʻĀ, ʻo ia wale nō ko mākou hanauna." Akā, i kekahi manawa aia paha he kumu lapaʻau ma hope o kēia e pono ai mākou e makaʻala. I kēia lā, ke kamaʻilio nei mākou e pili ana i kahi ʻano kakaikahi akā koʻikoʻi loa e makaʻala. ʻO ia ka HHT, a i ʻole Hereditary Hemorrhagic Telangiectasia .
I ka ʻōlelo maʻalahi, he aha ka HHT?
He maʻi hoʻoilina ka HHT i hoʻoili ʻia mai kēlā hanauna a i kēia hanauna. Hoʻopilikia nui ia i ke ʻano o ka hana ʻia ʻana o ko kākou mau kīʻaha koko, a i ʻole nā kīʻaha koko. E noʻonoʻo i ka ʻōnaehana kīʻaha koko i loko o ko kākou kino e like me kahi pūnaewele o nā alanui. Aia nā aʻa, e like me nā alaloa nui, a me nā aʻa koko, e like me nā alanui nui. ʻO nā alanui ʻaoʻao liʻiliʻi, liʻiliʻi e hoʻopili ana i kēia mau alanui nui ʻelua ua kapa ʻia ʻo nā capillaries.
ʻO ka mea e hana ʻia i loko o kekahi me HHT, ʻo ia ka hana pono ʻole ʻana o kēia mau pilina palupalu i kapa ʻia ʻo nā capillaries. Akā, aia nā pilina pololei, ʻano ʻole, a nāwaliwali ma waena o nā aʻa a me nā veins. I ka lāʻau lapaʻau, kapa mākou i kēia mau pilina i hana hewa ʻia he Arteriovenous Malformations (AVMs) .
Hiki i kēia mau AVM ke ulu i loko o kekahi ʻōkana o ko kākou kino, no ka laʻana ma ka ihu, nā māmā, nā ʻōpū, a i ʻole ka lolo. ʻO kahi AVM liʻiliʻi loa e ulu ana ma ka ʻili o ka ʻili ua kapa ʻia ʻo Telangiectasia . ʻO kēia nā kiko ʻulaʻula liʻiliʻi e ʻike ʻia ma loko o kou ʻili, e like me nā lehelehe. Hiki i kēia mau kīʻaha koko nāwaliwali ke pohā maʻalahi. Ke pohā a kahe ke koko, hiki iā ia ke hana i nā kūlana koʻikoʻi, ma muli o kona wahi.
ʻO ka mea nui, he nui ka poʻe me HHT e ola ana no nā makahiki me ka ʻike ʻole. ʻOiai ʻaʻohe lāʻau lapaʻau, nui nā lāʻau lapaʻau kūpono i loaʻa i kēia lā e kāohi i nā hōʻailona a pale i nā kūlana koʻikoʻi.
Hoʻopilikia kēia maʻi i hoʻokahi i loko o 5,000 mau kānaka ma ka honua holoʻokoʻa. Akā, no ka mea, ʻaʻole i ʻike ʻia ka nui o nā kānaka, ua manaʻo ʻia he nui aku paha nā maʻi. Hiki ke loaʻa i nā kānaka o kēlā me kēia makahiki a me kēlā me kēia lāhui. Ua kapa ʻia hoʻi ʻo ia he maʻi ʻo Osler-Weber-Rendu .
He aha nā hōʻailona nui o ka maʻi HHT?
Hiki ke ʻokoʻa nā hōʻailona o HHT mai kēlā kanaka a kēia kanaka. Aia ia i kahi o ke kino e loaʻa ai nā kīʻaha koko kūpono ʻole (AVM) a mākou i kamaʻilio ai ma mua. ʻAʻole paha i ʻike ʻia kekahi poʻe i nā hōʻailona. Akā, hiki i kekahi poʻe ke ʻike i nā hōʻailona koʻikoʻi loa.
E hoʻokaʻawale kākou i kēia mau hōʻailona ma ka papa ma lalo.
| ʻAno o ka hōʻailona | Ka wehewehe ʻana a me nā laʻana |
|---|---|
| Nā ʻano maʻamau no nā kānaka he nui |
|
| Nā hōʻailona o ke kahe koko i loko | |
| Nā hōʻailona i hoʻokumu ʻia e nā AVM ma nā ʻōpū nui e like me nā māmā a me ka lolo | |
| Nā pilikia kakaikahi akā koʻikoʻi |
No ke aha e ulu ai ʻo HHT?
He ʻano hoʻoilina maoli kēia.Hoʻokumu ʻia ia e kekahi mea. ʻO ia hoʻi, ʻaʻole ia he maʻi lele. He mea ia i hoʻoilina ʻia mai nā mākua a i nā keiki. ʻO ka HHT kahi maʻi i hoʻokumu ʻia e kahi gene dominant (dominant disorder). ʻO ia hoʻi, inā loaʻa i kekahi o kou mau mākua kēia maʻi, he 50% kou manawa e loaʻa ai kēia maʻi pū kekahi.
Hoʻokumu ʻia ʻo HHT e nā mutations i loko o ʻelua mau genes (ka gene `ENG` a me ka gene `ACVRL1`), a ke noiʻi nei nā kānaka ʻepekema i kēia.
Inā loaʻa iā ʻoe ka HHT, he mea nui loa e kamaʻilio me kāu kauka e pili ana i ka hiki ke hoʻoilina i kāu mau keiki.
Pehea e ʻike ʻia ai ka HHT?
Hiki paha i ke kauka ke kānalua i kēia ma hope o ka lohe ʻana e pili ana i kāu mau hōʻailona a me ka mōʻaukala ʻohana. ʻOiai hiki ke hana ʻia nā hoʻāʻo genetic e hōʻoia i ka hōʻailona, ua hana pinepine ʻia ka hōʻailona ma muli o nā hōʻailona.
E manaʻo kāu kauka he HHT kou inā loaʻa iā ʻoe ma ka liʻiliʻi he ʻekolu o kēia mau mea:
- Ka ihu koko hou.
- ʻO ke alo o nā telangiectasias he nui ma nā wahi o ka ʻili kahi i loaʻa pinepine ai nā kiko (ka maka, nā lehelehe, nā manamana lima).
- Loaʻa kahi AVM a i ʻole Telangiectasia i loko o kahi ʻōkana i loko o ke kino (e like me nā māmā, ka lolo, ke akepaʻa).
- Loaʻa kahi lālā pili o ka ʻohana (makuahine, makuakāne, kaikaina) me HHT.
Nā hoʻāʻo e hōʻoia i ka maʻi
Hiki i kāu kauka ke ʻōlelo iā ʻoe e hana i kekahi mau hoʻokolohua, e like me:
- ʻO ke scan Ultrasound: Kōkua kēia i ka ʻike inā he mau AVM i loko o ke ake.
- MRI (Magnetic Resonance Imaging) Scan: He mea pono loa ia, ʻoiai no ka nānā ʻana i nā AVM i loko o ka lolo.
- ʻO ke kiʻi CT (Computed Tomography): Hiki ke kiʻi i nā kiʻi maopopo o nā ʻōpū o loko o ke kino.
- Hoʻāʻo Pehu (Echocardiogram): He hoʻāʻo kūikawā kēia. Hoʻohana ʻia ia e ʻike inā he mau AVM i loko o nā māmā.
He aha nā lāʻau lapaʻau no HHT?
ʻO ka mea mua e hoʻomanaʻo ai, ʻaʻohe lāʻau lapaʻau no HHT. Eia nō naʻe, he nui nā lāʻau lapaʻau kūpono e hiki ke kōkua i ka kaohi ʻana i nā hōʻailona, e hōʻemi i ka pilikia o nā pilikia koʻikoʻi, a kōkua iā ʻoe e ola i kahi ola maʻamau.
ʻOiai e mālama ana i kāu mau hōʻailona o kēia manawa, e nānā pū kāu kauka no nā AVM huna i loaʻa ʻole paha nā hōʻailona.
Eia kekahi mau ʻano lapaʻau:
- No ke kahe pinepine ʻana o ke koko ihu: E hoʻohana i nā mea poni a me ka pīpī saline e hoʻomaʻū i ka ihu.
- No ka Anemia: E hāʻawi i nā pila pani hao a i ʻole, inā pono, i ka hoʻoili koko.
- No ka hoʻōki ʻana i ke kahe ʻana o ke koko: Hoʻopau ka lāʻau lapaʻau laser (`Ablation`) i nā kīʻaha koko liʻiliʻi e kahe ana ke koko.
- Embolization: Pili kēia i ke ālai ʻana i ke kīʻaha koko e alakaʻi ana i kahi AVM i pilikia o ke kahe koko a pahū paha me kahi mea kūikawā.
- ʻO ke ʻoki kino a i ʻole ka radiation therapy: Hoʻohana ʻia kēia mau mea e wehe a hoʻēmi paha i kekahi mau AVM.
- Ke hoʻōki ʻana i kekahi mau lāʻau lapaʻau: Pono e hoʻōki ʻia nā lāʻau lapaʻau e like me ka aspirin e hōʻemi ana i ke kāpili ʻana o ke koko ma ke ʻōlelo aʻoaʻo lapaʻau.
He mea nui loa: Inā loaʻa iā ʻoe ka HHT, ʻoiai inā ʻike ʻoe he mau AVM kou i loko o kou mau māmā, pono paha e lawe i nā lāʻau antibiotic ma mua o ke ʻoki niho, e like me ka unuhi ʻana i nā niho. ʻO kēia ke pale aku i nā maʻi e like me nā abscesses o ka lolo. E kamaʻilio me kāu kauka e pili ana i kēia.
Nā mea e noʻonoʻo ai i ka wā e noho ai me HHT
Pono paha ke kanaka me HHT i ka nānā ʻana a me ka mālama ʻana i ke olakino no ke ola holoʻokoʻa, akā me ka mālama kūpono, loaʻa i nā poʻe maʻi HHT kahi ola maʻamau.
He aha nā mea e hiki ke hana ʻia e pale aku ai i ke kahe ʻana o ke koko ihu?
- E kamaʻilio me kāu kauka a pale i nā lāʻau lapaʻau e hoʻonui ai i ke kahe koko (e like me ka aspirin, NSAID).
- E mālama i kou ihu i nā manawa a pau. He mea nui loa ka hoʻohana ʻana i kahi humidifier ma ka home, ka hoʻohana ʻana i nā saline nasal sprays, a me ka hoʻopili ʻana i nā poni i kuhikuhi ʻia e kāu kauka.
- E mālama i kahi puke pai e ʻike ai inā hoʻonui kekahi mau meaʻai a hana paha i ke kahe o kou ihu.
Inā ua ʻike ʻia ʻoe me HHT, he mea nui loa ia e aʻo aku i ke koena o kou ʻohana e hoʻāʻo ʻia pū kekahi, no ka mea, ʻo ka wikiwiki o ka ʻike ʻia ʻana o ka maʻi, ʻo ka nui o nā pilikia koʻikoʻi e hiki ke pale ʻia.
Leka Lawe-Home
- He kūlana hoʻoilina ka HHT e hoʻoulu ai i ka nāwaliwali o nā kīʻaha koko.
- ʻO nā hōʻailona nui, ʻo ia ke kahe pinepine ʻana o ka ihu a me nā kiko ʻulaʻula (telangiectasias) ma ka ʻili, nā lehelehe, a me nā manamana lima.
- Inā loaʻa iā ʻoe a i ʻole kekahi o kou ʻohana kēia mau hōʻailona, he mea nui loa e kamaʻilio me ke kauka e pili ana i ia mea.
- ʻOiai ʻaʻohe lāʻau lapaʻau piha no kēia maʻi, aia nā lāʻau lapaʻau kūpono e hiki ke kāohi i nā hōʻailona a pale i nā pilikia koʻikoʻi (e like me ka hahau ʻana a me ke kahe nui ʻana o ke koko).
- Me ka ʻike mua a me ka mālama kūpono, hiki iā ʻoe ke ola i kahi ola maʻamau a olakino hoʻi.
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