Ua lohe paha ʻoe i kahi kūlana kahi hiki ʻole iā ʻoe ke hoʻōki i ke kahe ʻana o ke koko mai kahi ʻoki liʻiliʻi? Malia paha he maʻi ko kekahi o kou ʻohana. ʻO ka maʻi nui kahi hiki ʻole iā ʻoe ke kāohi i
kou kahe ʻana o ke koko ua kapa ʻia ʻo Hemophilia. No laila, ʻo ka nīnau a ka poʻe he nui, inā he hoʻoilina kēia, hiki iā mākou ke pale aku iā ia mai ka hana ʻana? E kamaʻilio pololei kākou e pili ana i kēia, me ka maʻalahi.
ʻO ka mea mua, he aha ka hemophilia?
I ka ʻōlelo maʻalahi, ke loaʻa iā mākou kahi ʻoki a
ʻeha paha ma kekahi wahi o ko mākou kino, e pau ke kahe ʻana o ke koko ma hope o kekahi manawa, ʻeā? Ua kapa ʻia kēlā he clotting blood. E like me ke kūkulu ʻana i kahi pā, ua kau ʻia ka sima ma waena o nā piliki e hoʻopiha i nā hakahaka, hui pū kekahi mau protein i loko o ko mākou koko e hana i kahi "plug" ma kahi o ka ʻeha a hoʻōki i ke kahe ʻana o ke koko. Kāhea mākou i kēia mau protein
he Clotting Factors . ʻAʻole hana kekahi kanaka me ka hemophilia i hoʻokahi a ʻoi aku paha o kēia mau Clotting Factors i loko o ke kino i ka nui e pono ai. A i ʻole ʻaʻole lākou e hana pono. No laila, ʻoiai kahi ʻeha liʻiliʻi ʻaʻole ia e hoʻōki i ke kahe ʻana o ke koko a hoʻomau. I kekahi manawa, hiki ke kahe ke koko i loko o ke kino, ʻoi aku hoʻi i loko o nā hono a me nā ʻiʻo, me ka ʻole o ka ʻeha.
Pehea e ulu ai ka hemophilia? He hoʻoilina anei ia?
ʻAe,
he maʻi hoʻoilina ka hemophilia. ʻO ia hoʻi, he mea ia a mākou e hoʻoilina ai mai ko mākou mau mākua ma o
nā genes . Aia ka gene kīnā no kēia maʻi ma ka chromosome X. E like me kou ʻike, he ʻelua chromosome X (XX) ko nā wāhine, a he hoʻokahi chromosome X a hoʻokahi chromosome Y (XY) ko nā kāne. No laila, ʻoi aku ka maʻamau o kēia maʻi i waena o nā kāne.
- ʻO ka maʻamau, ʻo nā wāhine wale nō ka mea lawe i ka maʻi. ʻO ke ʻano kēia, ʻoiai he gene kīnā ko lākou ma kekahi o kā lākou mau chromosome X, ʻaʻole lākou e hōʻike i nā hōʻailona ma muli o kekahi chromosome X olakino ʻē aʻe. Eia nō naʻe, hiki iā lākou ke hoʻoili i ka gene kīnā i kā lākou mau keiki.
- Inā loaʻa i kahi keiki kāne kēia chromosome X hemahema mai kona makuahine mai, e loaʻa iā ia ka hemophilia no ka mea ʻo ia wale nō ka chromosome X āna.
No laila, ke maopopo nei iā ʻoe? ʻAʻole ʻo Hemophilia kahi mea i loaʻa iā mākou mai waho e like me ke anu . He kūlana ia e hele mai me kā mākou mau genes, i hoʻoilina ʻia.
No laila, ʻo ka nīnau nui: Hiki ke pale ʻia ka hemophilia mai ka hoʻoilina ʻana?
ʻO ka pane pōkole loa a me ka ʻoiaʻiʻo loa i kēia,
"ʻAʻole."Wahi a ka ʻepekema lapaʻau o kēia wā, ʻaʻohe ala e pale aku ai i kekahi mai ka hoʻoilina ʻana i kahi gene kīnā. ʻO ke ʻano kēia inā he moʻolelo ʻohana o ka hemophilia, aia kahi manawa kūpono e hoʻoilina ai ʻoe a i ʻole kāu keiki i ka gene. ʻAʻohe lāʻau lapaʻau a lāʻau pale paha i kēia manawa.
Akā, mai hopohopo! ʻOiai ʻaʻole hiki iā mākou ke pale aku i ka hoʻoilina ʻana o ka maʻi, aia kekahi mau mea koʻikoʻi hiki iā mākou ke hana.
He aha ka mea hiki ke hana ʻia: Ke aʻo ʻana i nā ʻano genetics
Inā loaʻa kekahi o kou ʻohana i ka hemophilia, ʻo ka mea maikaʻi loa hiki iā ʻoe ke hana ma mua o kou male ʻana a i ʻole ka hoʻolālā ʻana e loaʻa kahi keiki, ʻo ia ke ʻimi i
ka ʻōlelo aʻoaʻo genetic .
- ʻO wai ka mea e pono e kuhikuhi i kēia?
- Inā he poʻe hemophiliac i loko o ka ʻohana (ma ka ʻaoʻao o ka makuahine a makuakāne paha).
- Inā he wahine ʻoe a makemake ʻoe e ʻike inā he mea lawe ʻoe i ka maʻi.
- Inā nā mākua i loaʻa mua kahi keiki me ka hemophilia e noʻonoʻo ana e loaʻa kahi keiki.
- He aha ka mea e hana ʻia ma kēia kūkākūkā ʻana?
E nānā hou aku kekahi kākā'ōlelo genetic a i ʻole ke kākā'ōlelo genetic i kāu mōʻaukala olakino ʻohana a me kāu hoa. A laila e wehewehe lākou i ka pilikia o kāu keiki e loaʻa ana i ka hemophilia. Inā pono, hiki ke hana ʻia
nā hoʻāʻo koko kūikawā e hoʻoholo ai inā he mea lawe ʻoe. E kōkua kēia kūkākūkā iā ʻoe e hoʻoholo i kahi hoʻoholo naʻauao. Hiki i kāu kauka ke kūkākūkā i
nā hoʻokolohua prenatal (e.g., amniocentesis, chorionic villus sampling - CVS) hiki ke ʻike i ka maʻi i loko o ka pēpē i kona wā i loko o ka ʻōpū.
Inā ʻaʻole hiki ke pale ʻia ka maʻi, pehea lā e pale ʻia ai nā pilikia?
ʻO kēia ka ʻāpana koʻikoʻi loa. ʻOiai ʻaʻole hiki iā mākou ke pale aku i ka hemophilia mai ka hoʻoilina ʻia ʻana, nui nā mea hiki iā mākou ke hana
e pale aku i nā pilikia a me nā pilikia e hiki ai ke hana. Hiki i kēia mau mea ke kōkua iā ʻoe e ola i kahi ola olakino a maʻamau me ka hemophilia.
| Nā pilikia hiki ke pale ʻia | Nā mea e hana ai |
|---|
| Ka kahe pinepine ʻana o ke koko a me ka ʻeha | - Ke pale ʻana i nā haʻuki pili e like me ka rugby a me ka mokomoko. - Ke komo ʻana i nā hoʻomaʻamaʻa palekana e like me ka ʻauʻau ʻana a me ka hele wāwae. - Inā he keiki liʻiliʻi kāu, e hoʻohana i nā uhi pale ma nā mea ʻoiʻoi ma ka home, a me nā pale ma nā kuli a me nā kuʻekuʻe lima. |
| Ka pōʻino o nā hui | - Ke lawe ʻana i nā mea hoʻopaʻa koko i kuhikuhi ʻia e ke kauka i ka manawa kūpono a me ka nui kūpono. ʻO kēia ka mea nui loa. - Ke hana ʻana i nā hoʻoikaika kino hoʻoikaika hui e like me ke kuhikuhi ʻana a ka physiotherapy. |
| Ke kahe koko mai nā niho a me nā ʻāʻī | - E mālama pono i ka hoʻomaʻemaʻe waha. E palaki i kou mau niho i kēlā me kēia lā me kahi pulupulu niho palupalu. - E kipa pinepine i kāu kauka niho. Ma mua o ke komo ʻana i kekahi kaʻina hana e like me ka unuhi ʻana i ka niho, he mea nui e hoʻomaopopo i kāu kauka e pili ana i kou maʻi hemophilia. |
| Ke kahe koko i hoʻokumu ʻia e nā lāʻau lapaʻau ʻino | - E pale loa i ka lawe ʻana i nā lāʻau lapaʻau e hōʻemi ana i ke kāpili ʻana o ke koko, e like me ka aspirin a me nā NSAID (e.g., ibuprofen, diclofenac). - E nīnau mau i kāu kauka ma mua o ka lawe ʻana i kekahi lāʻau lapaʻau. |
Inā hahai pono ʻia kēia mau mea, hiki i kahi hemophiliac ke ola i kahi ola maikaʻi me ka ʻole o nā pilikia weliweli. No laila, ma kahi o ka hopohopo e pili ana i ka hiki ʻole ke pale aku i ka maʻi mai ka hoʻoilina ʻana, ʻo ka mea nui ka ʻike pehea e noho ai me ka maʻi a pehea e pale aku ai i nā pilikia.
Leka Lawe-Home
- He maʻi hoʻoilina ka Hemophilia i hiki ʻole ke pale ʻia a hoʻōla ʻia paha me nā ʻano hana o kēia wā.
- Inā he moʻolelo o ka hemophilia i loko o kou ʻohana, he mea nui loa ia e ʻimi i ka ʻōlelo aʻoaʻo genetic ma mua o ka noʻonoʻo ʻana e pili ana i ka loaʻa ʻana o kahi keiki.
- ʻOiai ʻaʻole hiki ke pale ʻia ka maʻi, nui nā mea hiki ke hana ʻia e pale aku i nā pilikia (ke kahe ʻana o ke koko, ka hōʻino ʻia ʻana o nā hono ) i hoʻokumu ʻia e ka maʻi.
- He mea nui e lawe pono i ka lāʻau lapaʻau (Factor Replacement Therapy) i kuhikuhi ʻia e ke kauka, e lawe i kahi nohona palekana, a pale i nā lāʻau lapaʻau ʻino.
- Inā he mau hopohopo a makaʻu paha kou e pili ana i kēia, mai hūnā iā ʻoe iho. ʻO kāu kaukaE kamaʻilio ākea me lākou a e loaʻa iā ʻoe ke aʻo kūpono.
Hemophilia, Ke kāpili ʻana o ke koko, Ke aʻo ʻana i nā ʻano hoʻoilina, nā maʻi hoʻoilina, Ke kahe koko ʻana, Nā mea e hoʻopili ai i ke koko
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