ʻAʻole anei ʻoe e pilikia i ka hoʻōki ʻana i ke koko? E aʻo kākou e pili ana i ka hemophilia!

Ua lohe paha ʻoe i ka maʻi i kapa ʻia ʻo Hemophilia ? E hopohopo iki paha ʻoe ke lohe ʻoe i kēia inoa. Akā, mai hopohopo, no ka mea, he maʻi laha ʻole kēia. I kēia lā, e kamaʻilio mākou e pili ana i ke ʻano o ka hemophilia, pehea e ulu ai, he aha nā hōʻailona, ​​a inā he lāʻau lapaʻau, ma ke ʻano maʻalahi hiki iā ʻoe ke hoʻomaopopo.

He aha ka hemophilia?

I ka ʻōlelo maʻalahi, he maʻi koko hoʻoilina ka hemophilia i loaʻa i nā keiki. ʻO ke ʻano kēia, ʻaʻole i paʻa pono kou koko. Hiki i kēia ke hoʻoulu i ke kahe koko nui, a i ʻole nā ​​ʻeha liʻiliʻi.

E noʻonoʻo e pili ana i ia mea, aia nā protein kūikawā i loko o ko kākou kino e kōkua i ko kākou hoʻopaʻa ʻana i ke koko. Kāhea mākou i kēia mau mea 'clotting factors' . Ua like lākou me nā koa liʻiliʻi e hana ana e hoʻōki i ke kahe ʻana o ke koko. Ke loaʻa iā ʻoe ka hemophilia, ʻaʻole lawa ka hana a ke kino i hoʻokahi a ʻoi aku paha o kēia mau 'clotting factors'. A laila emi ka hoʻopaʻa ʻana o ke koko a nui kou kahe ʻana.

Aia kekahi mau ʻano nui o ka hemophilia. Hiki i ke kūlana ke koʻikoʻi, waena, a ʻoluʻolu paha, ma muli o ka nui o nā mea hana clotting i loko o kou koko.

ʻO ka nūhou maikaʻi, aia kahi lāʻau lapaʻau no kēia. Ke hoʻāʻo nei nā kauka e hoʻihoʻi i nā kumu clotting haʻahaʻa i loko o ke kino. ʻAʻohe lāʻau lapaʻau no ka hemophilia i kēia manawa. Eia nō naʻe, ʻo ka poʻe me ke ʻano maʻamau e ola like me nā poʻe ʻē aʻe me ka lāʻau kūpono. Ke noiʻi nei hoʻi nā kānaka ʻepekema i nā ʻano hana hou, e like me ka gene therapy , e ʻike inā hiki ke ho'ōla ʻia.

Hiki ke ulu ka hemophilia ma hope o ka hānau ʻana?

ʻAe, hiki ke hana. Akā, he mea kākaʻikahi loa ia. Ua kapa ʻia kēia ʻo 'acquired hemophilia'. ʻO ia hoʻi, ʻaʻole ia he mea hoʻoilina. ʻO ka mea e hana ʻia ma ʻaneʻi, ʻo ia ka hoʻouka hewa ʻana o nā protein pale ponoʻī o ko mākou kino , i kapa ʻia he antibodies , i kekahi manawa i kekahi manawa i kekahi o kā mākou mau mea hoʻopaʻa koko ponoʻī. ʻO kēia mau antibodies e hoʻouka ana ma ke ala hewa ua kapa ʻia ʻo 'autoantibodies' .

He maʻi maʻamau anei ka hemophilia?

ʻAʻole, ʻaʻole loa. He maʻi laha ʻole kēia. Wahi a nā helu helu ma ʻAmelika Hui Pū ʻIa (CDC ʻAukake 2022), ma kahi o 33,000 poʻe ma laila he hemophilia. Hoʻopilikia pinepine ia i nā kāne. I kekahi manawa, hiki i nā wahine ke ʻike i nā hōʻailona e like me nā pae haʻahaʻa o ke koko clotting a me ke kahe nui ʻana o ke koko i ka wā o ka menstruation.

He aha nā ʻano hemophilia?

ʻEkolu mau ʻano nui o ka hemophilia:

• Hemophilia A: ʻO kēia ke ʻano maʻamau. Hoʻokumu ʻia ia e ka nele o ka mea hoʻopaʻa koko helu 8, i ʻike ʻia hoʻi ʻo ka mea hoʻopaʻa VIII., i ka wā ʻaʻole lawa ke kino. Ma kahi o 10 o 100,000 mau kānaka e loaʻa paha kēia.
• Hemophilia B: Hoʻokumu ʻia kēia e ka nele o ka factor clotting koko 9, a i ʻole factor IX . Ma kahi o 3 i loko o 100,000 poʻe i loaʻa i kēia ʻano.
• Hemophilia C: Ua kapa ʻia hoʻi ʻo ka hemahema o ka factor XI , he mea kakaikahi loa kēia, e pili ana i hoʻokahi i loko o hoʻokahi miliona mau kānaka.

He maʻi koʻikoʻi anei ka hemophilia?

ʻAe, i kekahi manawa hiki ke koʻikoʻi kēia. Hiki i ka poʻe me ka hemophilia koʻikoʻi ke kahe koko ma ke ʻano e hoʻoweliweli ai i ke ola, a mākou e kapa nei ʻo 'hemorrhage.' Akā ʻo ka hapa nui o ka manawa e kahe koko lākou i loko o nā ʻiʻo a i ʻole nā ​​​​hui.

He aha nā hōʻailona o ka hemophilia?

ʻO nā hōʻailona koʻikoʻi loa, ʻo ia ke kahe koko nui a i ʻole ke kahe ʻana o ke koko a me ka palapū.

Nā hōʻailona i ʻike pinepine ʻia

Hiki i ka poʻe me ka hemophilia ke loaʻa i nā palapū nui mai nā pōpilikia liʻiliʻi. ʻO ke ʻano kēia, ke kahe nei ke koko ma lalo o ka ʻili.

• Malia paha ma hope o ke ʻoki ʻana, ma hope o ka unuhi ʻana i ka niho, a i ʻole kahi ʻoki ma ka manamana lima , hiki i ke kahe koko ke mau no kahi manawa lōʻihi loa.
• Hiki ke kahe koke ke koko ihu me ke kumu ʻole.

ʻO ka nui o ka ʻeha/ke kahe koko āu e pili ana i ka loaʻa ʻana o ka hemophilia koʻikoʻi, kaulike, a ʻoluʻolu paha.

• Hiki i nā kānaka me ka hemophilia koʻikoʻi ke kahe pinepine ke koko me ke kumu ʻole.
• Hiki i ka poʻe me ka hemophilia moderate ke kahe ke koko no kahi manawa lōʻihi loa inā lākou i loko o kahi ulia nui.
• ʻO ka poʻe me ka hemophilia ʻoluʻolu wale nō e ʻike i ke kahe koko maʻamau ma hope o ke ʻoki kino nui a i ʻole kahi ulia nui.

Hiki paha ke loaʻa nā hōʻailona ʻē aʻe:

• ʻEha nā hono ma muli o ke koko e hōʻiliʻili ana i loko o ke kino. Hiki i nā wahi e like me nā kuʻekuʻe wāwae, nā kuli, nā pūhaka, a me nā poʻohiwi ke ʻeha, pehu, a wela paha ke pā.
• Ke kahe koko ʻana i loko o ka lolo. He mea kakaikahi loa kēia i nā poʻe me ka hemophilia koʻikoʻi. Inā he kahe koko kou i loko o ka lolo, loaʻa paha iā ʻoe kahi ʻeha poʻo mau, ka ʻike pohihihi, a i ʻole ka hiamoe nui . Inā he hemophilia kou, pono ʻoe e ʻike koke i ke kauka inā loaʻa iā ʻoe kekahi o kēia mau hōʻailona.

Nā hōʻailona i nā pēpē a me nā keiki liʻiliʻi

I kekahi manawa, ʻike ʻia ka hemophilia ke ʻoki poepoe ʻia kahi pēpē keikikāne a kahe ke koko ma mua o ka maʻamau. I kekahi manawa, hōʻike nā keiki i nā hōʻailona i kekahi mau mahina ma hope o ka hānau ʻana. ʻO nā hōʻailona maʻamau:

• Ke kahe koko ʻana:Hiki i nā pēpē ke kahe ke koko mai ko lākou waha ke nahu lākou i kahi mea pāʻani liʻiliʻi.
• Nā puʻupuʻu pehu ma ke poʻo: Hiki i nā pēpē a me nā keiki ʻōpio ke loaʻa nā puʻupuʻu nui a poepoe (nā hua manu) ke kuʻi lākou i ko lākou mau poʻo.
• Uē pinepine, hoʻomaha ʻole, a me ka hoʻokaʻulua ʻole e kolo a hele paha: Hiki ke hana ʻia kēia mau mea inā ua komo ke koko i loko o kahi ʻiʻo a i ʻole ke ami. Hiki ke ʻike ʻia ka ʻāpana he palapū, pehu, wela ke pā aku, a i ʻole e ʻeha paha ka pēpē ʻoiai ke pā māmā ʻia.
• Nā Hematoma: ʻO ka 'hematoma' kahi hōʻiliʻili o nā ʻōpū koko e hōʻiliʻili ana ma lalo o ka ʻili i nā pēpē a me nā keiki ʻōpio. Hiki ke loaʻa kēia ʻano hematoma ma hope o ka hoʻokomo ʻia ʻana.

He aha nā kumu o ka hemophilia?

Hana ʻia kēia mau 'kumu clotting' mai kekahi mau genes i loko o ko kākou kino. I ka hemophilia hoʻoilina, hoʻololi nā genes e kuhikuhi ana i ka hana ʻana o kēia mau 'kumu clotting', ʻo ia hoʻi ke loli nei lākou. Hiki i kēia mau genes i hoʻololi ʻia ke hana i nā 'kumu clotting' hewa a i ʻole ʻaʻole lawa ka hana ʻana i nā 'kumu clotting'. Eia nō naʻe, ma kahi o 20% o nā maʻi hemophilia he spontaneous, ʻo ia hoʻi hiki iā lākou ke loaʻa i ka maʻi ʻoiai inā ʻaʻohe mea o ka ʻohana i loaʻa iā ia ma mua.

Pehea i hoʻoilina ʻia ai ka hemophilia?

He mau maʻi pili i ka moekolohe nā ʻano hemophilia A a me B. Ua hoʻoilina ʻia lākou ma ke ʻano recessive i pili i ka X. E nānā kākou pehea e hana ʻia ai:

• Loaʻa iā kākou a pau hoʻokahi set o nā chromosome mai ko kākou makuahine a hoʻokahi set o nā chromosome mai ko kākou makuakāne. Inā loaʻa iā ʻoe kahi chromosome X mai kou makuahine a me kahi chromosome X mai kou makuakāne, he kaikamahine ʻoe. Inā loaʻa iā ʻoe kahi chromosome X mai kou makuahine a me kahi chromosome Y mai kou makuakāne, he keikikāne ʻoe. I ka ʻōlelo maʻalahi, hāʻawi mau ka makuahine i kāna keiki i kahi chromosome X. Hoʻoholo ʻia kou wahine e ka hāʻawi ʻana o ka makuakāne iā ʻoe i kahi chromosome X a i ʻole Y.
• Inā he kīnā ko ka wahine i loko o ka gene e hana ai i kēia 'clotting factor' ma kekahi o kāna mau chromosome X ʻelua, he mea lawe paha ʻo ia i ka hemophilia, akā ʻaʻole paha ʻo ia e hōʻike i nā hōʻailona no ka mea he gene olakino kona ma kāna chromosome X ʻē aʻe.
• Inā he keiki kāne ka makuahine lawe me kahi chromosome X kīnā e like me kēia, aia he 50% ka manawa e hoʻoilina ai ke keiki i ka chromosome X kīnā. Inā hana ʻia kēlā, e loaʻa i ke keiki kāne ka hemophilia.
• Inā he kaikamahine kā kēlā makuahine, aia he 50% ka manawa e hoʻoilina pū ai ke keiki i ka chromosome X kīnā. Eia nō naʻe, ʻaʻole paha ʻo ia e hōʻike i nā hōʻailona no ka mea ua hoʻoilina ʻo ia i kahi chromosome X olakino mai kona makuakāne mai. A laila e lilo pū kēlā kaikamahine i mea lawe.

ʻO ia hoʻi, ʻo ka wahine i hoʻoilina i kahi chromosome X kīnā, lilo ia i mea lawe o ka hemophilia. ʻAʻole paha he mau hōʻailona kona, akā hiki iā ia ke hoʻoili i ka maʻi i kāna mau keiki. Loaʻa i kēlā me kēia keiki āna he 50% ka manawa e hoʻoilina ai i ka hemophilia.ʻOi aku ka nui o ka hōʻike ʻana o nā keiki kāne i nā hōʻailona inā loaʻa iā lākou ka hemophilia, no ka mea, ʻaʻole lākou i loaʻa i kahi chromosome X olakino mai ko lākou makuakāne mai.

Loaʻa i nā kaikamahine nā hōʻailona o ka hemophilia?

ʻAe, hiki ke hana. Akā, he ʻoluʻolu nā hōʻailona. No ka laʻana, ʻaʻole paha i lawa nā kumu clotting maʻamau o ka wahine nona ka gene hemophilia. Inā hana kēia, hiki iā ia ke loaʻa ke kahe koko nui i ka wā o kona mau wā, ʻeha maʻalahi, kahe nui ke koko ma hope o ka hānau ʻana, a kahe paha ke koko i loko o kona mau hono, e hoʻoulu ai i nā pilikia hono.

Pehea e ʻike ai nā kauka i ka hemophilia?

E nīnau mua ke kauka iā ʻoe i kahi mōʻaukala olakino piha a hana i kahi hoʻokolokolo kino. Inā loaʻa iā ʻoe nā hōʻailona o ka hemophilia, e nīnau pū lākou e pili ana i kou mōʻaukala ʻohana. Hiki iā lākou ke hana i nā hoʻokolohua e like me:

• Helu Koko Piha (CBC): Hana ʻia kēia e nānā i nā ʻano o nā ʻāpana koko.
• Hoʻāʻo Manawa Prothrombin (PT): Hiki i kēia ke nānā i ka wikiwiki o ke kuʻi ʻana o kou koko.
• Hoʻāʻo Manawa Thromboplastin hapa (PTT): ʻO kēia kekahi hoʻāʻo e ana i ka manawa e pono ai ke koko e hoʻopili.
• Nā hoʻāʻo koko kikoʻī: Ke ana kēia hoʻāʻo koko i nā pae o nā mea hana koko kikoʻī, e like me ka mea hana VIII a me ka mea hana IX .

He aha kēia mau pae kumu clotting?

ʻO nā mea clotting factors nā mea e kōkua ai i ka kaohi ʻana i ke kahe koko. Hoʻokaʻawale nā ​​​​kauka i ka hemophilia ma ke ʻano he ʻoluʻolu, waena, a koʻikoʻi paha ma muli o ka nui o kēia mau mea clotting i loko o kou koko:

• ʻO ka poʻe me nā kumu clotting ma waena o 5% a me 30% o nā pae maʻamau he hemophilia ʻoluʻolu ko lākou.
• ʻO ka poʻe me nā kumu clotting ma waena o 1% a me 5% o nā pae maʻamau he hemophilia waena ko lākou.
• ʻO ka poʻe me ka emi ma mua o 1% o nā kumu clotting maʻamau he hemophilia koʻikoʻi ko lākou.

He aha nā lāʻau lapaʻau no ka hemophilia?

Hoʻōla nā kauka i ka hemophilia ma ka hoʻonui ʻana i nā pae o nā kumu clotting haʻahaʻa a i ʻole ke pani ʻana i nā kumu clotting i nalowale. Ua kapa ʻia kēia he replacement therapy .

Ma kēia lāʻau lapaʻau pani, hāʻawi ʻia ʻoe i nā mea hana clotting i hana ʻia mai ka plasma kanaka (nā mea hoʻohuihui plasma kanaka) a i ʻole nā ​​​​​​mea hana clotting' recombinant . ʻO ka maʻamau, ʻo ka poʻe me ka hemophilia koʻikoʻi wale nō e pono ai kēia lāʻau lapaʻau pani ma ke ʻano maʻamau. Hāʻawi ʻia ka poʻe me ka hemophilia māmā a me ka haʻahaʻa i kēia lāʻau lapaʻau inā kokoke lākou e hana ʻoki. Hāʻawi ʻia lākou i nā antifibrinolytics.Hiki ke hāʻawi ʻia nā lāʻau lapaʻau e pale ai i ka hoʻoheheʻe ʻana o nā ʻōpuʻu koko.

Hana ʻia kēia mau mea hoʻohuihui koko mai ke koko kanaka i hāʻawi ʻia. Hoʻomaʻemaʻe ʻia a hoʻāʻo ʻia lākou e hōʻemi i ka pilikia o ka hoʻoili ʻana i nā maʻi lele e like me ka hepatitis a me ka HIV . Hāʻawi ʻia kēia mau mea pani ma ke ʻano he infusion intravenous (IV) .

Inā loaʻa iā ʻoe ka hemophilia koʻikoʻi a kahe pinepine ke koko, hiki i kāu kauka ke kuhikuhi i kahi lāʻau i kapa ʻia ʻo 'prophylactic factor infusions' e pale aku i ke kahe ʻana o ke koko.

Aia kekahi mau pilikia i ka mālama ʻana?

Hoʻomohala kekahi poʻe e loaʻa ana i kēia lāʻau lapaʻau pani i nā antibodies , i kapa ʻia he inhibitors , e hoʻouka ana i nā kumu clotting i hāʻawi ʻia iā lākou. Hoʻohana nā kauka i kahi kaʻina hana i kapa ʻia ʻo Immune Tolerance Induction (ITI) e mālama ai i kēia. Pili ka ITI i ka hāʻawi ʻana iā lākou i nā inikini o nā kumu clotting i kēlā me kēia lā e hoʻohaʻahaʻa i nā pae o nā inhibitors. Hiki i kēia ke lilo i lāʻau lapaʻau lōʻihi, a pono paha kekahi poʻe i kēia lāʻau lapaʻau no nā mahina a i ʻole nā ​​​​makahiki.

Hiki ke pale ʻia ka hemophilia?

ʻAʻole, ʻaʻole hiki ke hana ʻia. Inā he hemophilia kou a he mau keiki kāu, e ʻōlelo paha kāu kauka i ka hoʻāʻo ʻana i ka genetic . Ma kēlā ala, hiki iā ʻoe a me kāu mau keiki ke ʻike inā paha e hoʻoili lākou i ka hemophilia i ka hanauna e hiki mai ana.

He aha ke ʻano o ka manaʻolana e pono ai i kahi kanaka me ka hemophilia?

Inā loaʻa iā ʻoe ka hemophilia, pono paha ʻoe i ka lāʻau lapaʻau no ke koena o kou ola. ʻO ka nui o ka lāʻau lapaʻau āu e pono ai ma muli o ke ʻano o ka hemophilia āu e loaʻa ai, kona koʻikoʻi, a inā paha e loaʻa iā ʻoe nā 'mea pale'.

He aha ke kūlana o ke ola o kekahi kanaka me ka hemophilia?

Wahi a ka World Federation of Hemophilia, ʻo ke ola o ke kāne me ka hemophilia he 10 mau makahiki ka pōkole ma mua o ke kāne me ka ʻole o ka hemophilia, e like me ka ʻikepili 2012 mai ka World Federation of Hemophilia. Eia naʻe, ke ʻōlelo nei lākou he maʻamau ke ola o nā keiki me ka hemophilia i ʻike ʻia a mālama ʻia i ka wā ʻōpiopio .

Akā, ʻaʻole like nā kānaka a pau. ʻO ka mea ʻoiaʻiʻo no kekahi kanaka, ʻaʻole paha ia he ʻoiaʻiʻo no kekahi. Inā he hemophilia kou a i ʻole kāu keiki, e nīnau i kāu kauka i ka mea e manaʻo ai. ʻIke ʻo ia i ke kūlana a me ke olakino maikaʻi loa o kāu/kāu keiki.

Pehea wau e mālama ai iaʻu iho?

Pono paha ka poʻe me ka hemophilia i ka mālama olakino e pale aku i ke kahe ʻana o ke koko. Pono paha lākou e haʻalele i kekahi mau hana a me nā lāʻau lapaʻau. Eia nō naʻe, nui nā mea hiki iā ʻoe ke hana e hoʻokele i ka hopena o ka hemophilia i kou ola.

Nā mea pono ʻole e hana

ʻO nā mea i maʻalahi i nā poʻe ʻē aʻe ke kuʻi, hāʻule, a kuʻia paha e hiki ke hana i nā pilikia koʻikoʻi no ka poʻe me ka hemophilia. Pono lākou e pale i nā hana e hoʻokau iā lākou i ka pilikia nui o ka hāʻule ʻana a i ʻole ka hahau ʻia ʻana me ka ikaika. Nā Laʻana:

• Ke pāʻani nei i nā haʻuki e like me ka pôpeku, hockey, a me ka rugby.
• Ke komo ʻana i nā mea e like me ka mokomoko a me ka hakakā.
• Ke holo nei i kahi mokokaikala.
• Heʻe papa heʻe.

ʻO nā haʻuki ʻē aʻe, e like me ka pôpeku, ka basketball, a me ka baseball, he kiʻekiʻe nō hoʻi ka pilikia o ka hōʻeha. Inā makemake ʻoe e pāʻani i kēia mau haʻuki, e kamaʻilio me kāu kauka e pili ana i nā mea e like me ka hoʻohana ʻana i nā mea pale.

Nā lāʻau lapaʻau maikaʻi ʻole e lawe

ʻO nā lāʻau hoʻopau ʻeha e like me ka aspirin, ibuprofen, a me ka naproxen e pale aku i ke kāpili ʻana o ke koko. Eia kekahi, ʻo ka lawe ʻana i nā anticoagulants e like me ka heparin a i ʻole warfarin ʻaʻole ia he manaʻo maikaʻi.

Nā mea hiki iā ʻoe ke hana e ola ai i kahi ola maikaʻi aʻe

Nui nā mea hiki iā ʻoe ke hana e hōʻemi i ka hopena o ka hemophilia i kou ola:

• E hoʻomaka i kahi hana hoʻoikaika kino: E hopohopo paha ʻoe no ka ʻeha ʻana i ka wā e hoʻoikaika kino ana. Eia nō naʻe, e kamaʻilio me kāu kauka e pili ana i nā ala e noho hana ai me ka hōʻemi ʻana i kou pilikia o ke kahe ʻana o ke koko.
• E hoʻokele i ke kaumaha : He maʻi ke hemophilia no ke ola holoʻokoʻa, a pono paha ʻoe e hoʻoikaika hou aku e kaulike me kou ʻohana a me nā kuleana hana.
• E mālama i ke olakino niho maikaʻi: ʻO ka palaki ʻana, ka flossing, a me ka ʻike pinepine ʻana i kāu kauka niho hiki ke hōʻemi i ka pilikia o ka pono o ka mālama niho e hiki ai ke kahe ke koko. Mai poina e haʻi i kāu kauka e pili ana i kou kūlana.
• E mālama i ke kaumaha olakino: Inā pilikia ʻoe i ka neʻe ʻana a puni ma muli o ke kahe ʻana o ke koko i loko a me ka hōʻino ʻia o nā hono, e kōkua ka kaohi ʻana i kou kaumaha.
• E hoʻomaopopo i ka poʻe a puni ʻoe: Inā loaʻa iā ʻoe ka hemophilia koʻikoʻi, hiki iā ʻoe ke loaʻa i nā hanana kahe koko koke a hiki ʻole ke kaohi ʻia, ʻoiai inā ʻoe e lawe i ka lāʻau lapaʻau. E hoʻomaopopo i kou ʻohana e pili ana i ka mea e hana ai inā hana kēia iā ʻoe. Inā loaʻa i kāu keiki ka hemophilia, e hoʻomaopopo i kā lākou poʻe mālama a me nā limahana kula e pili ana i ka mea e hana ai inā kahe ke koko o kāu keiki.

Āhea wau e ʻike ai i ke kauka?

Inā ʻike ʻoe i kekahi mau loli i kou kino, e like me ke kahe nui ʻana o ke koko a i ʻole ka palapū, e ʻike i ke kauka.

I ka manawa hea e hele ai i ka lumi pilikia

Pono ʻoe e hele koke i ka lumi pilikia ma kēia mau kūlana:

• Inā loaʻa iā ʻoe kahi ʻeha poʻo nui a i ʻole ke ʻike nei ʻoe i ka dizziness, hiki i kēia mau hōʻailona ke hōʻike e kahe ana ke koko i loko o kou lolo.
• Inā he pehu a/a ʻeha paha kou mau hono, a ʻaʻohe ou lāʻau lapaʻau e pani ai i nā kumu.

He aha nā nīnau e pono iaʻu e nīnau aku i ke kauka?

Inā ʻike ʻia ʻoe a i ʻole kāu keiki me ka hemophilia, makemake paha ʻoe e nīnau i kāu kauka i nā nīnau e like me kēia:

• He aha ke ʻano hemophilia i loaʻa iaʻu/i kaʻu keiki?
• He aha nā lāʻau lapaʻau āu e paipai nei?
• He aha nā hopena ʻaoʻao o ka lāʻau lapaʻau?
• Pono anei au/kaʻu keiki e loaʻa i ka lāʻau lapaʻau i kēlā me kēia lā?
• He aha nā hana maikaʻi ʻole iaʻu/kaʻu keiki e hana ai?
• He aha nā lāʻau lapaʻau maikaʻi ʻole iaʻu/kaʻu keiki e lawe?
• He aha kaʻu e hana ai e mālama i ka hopena o kēia kūlana i ke ola o kaʻu/kaʻu keiki?

Leka Lawe-Home

He maʻi koko laha ʻole ka hemophilia, he maʻi hoʻoilina. Hiki iā ia ke loaʻa ka hopena koʻikoʻi i kou ola. Pono paha ka poʻe me ka hemophilia i ka mālama olakino no ke ola holoʻokoʻa. Hopohopo paha nā mākua o nā keiki me ka hemophilia e pili ana i ka pale ʻana i kā lākou mau keiki mai ka pōʻino, a me ke aʻo ʻana iā lākou e noho me ka hemophilia.

I kēia manawa, ʻaʻole hiki i nā kauka ke ho'ōla loa i ka hemophilia. Eia nō naʻe, hiki iā lākou ke hāʻawi i nā lāʻau lapaʻau e pale aku ai a hōʻemi paha i nā hōʻailona o ka hemophilia. Hiki iā lākou ke kuhikuhi i nā hana e hiki ai iā ʻoe ke hana e hōʻemi i ka hopena o ka hemophilia i kou ola o kēlā me kēia lā. ʻO ka mea nui loa, ʻo ia ke noho mālie a hahai pono i nā ʻōlelo a kāu kauka.