He aha ka Hemophilia? Nā Hōʻailona, Nā Kumu, a me ka Lapaʻau

ʻO ka hemophilia kahi maʻi koko genetic kahi e ʻole ai kāu koko e hoʻopaʻa pono i ka wā e hōʻeha ai ʻoe. Hana kēia no ka mea ʻaʻole lawa nā protein i kapa ʻia ʻo nā clotting factors i kāu kino e kōkua ai i ka hoʻopau ʻana i ke koko. ʻOiai ke kani ʻino nei, he miliona o nā kānaka me ka hemophilia e ola ana i nā ola piha, hana me ka mālama lapaʻau kūpono a me nā hoʻoponopono nohona.

He aha ka Hemophilia?

ʻO ka hemophilia kahi kūlana hoʻoilina e hoʻopilikia ana i ka hiki o kāu koko ke hana i nā clots. I ka wā e ʻoki ai ʻoe a i ʻeha paha, pono e mānoanoa a hana i kahi plug kāu koko e hoʻopau ai i ke koko. Loaʻa i nā kānaka me ka hemophilia nā pae haʻahaʻa o nā protein clotting kūikawā, no laila e lōʻihi ka hoʻopau ʻana i ke koko.

E noʻonoʻo i ka clotting koko e like me kahi hana kaulahao kahi e hilinaʻi ai kēlā me kēia ʻanuʻu i ka mea ma mua. I ka hemophilia, nalowale a nāwaliwali paha kekahi loulou koʻikoʻi i kēia kaulahao. ʻAʻole kēia manaʻo e koko ʻoe a make mai kahi ʻoki pepa, akā ʻo ia hoʻi e pono ai nā hōʻeha i ka nānā a me ka lapaʻau ʻoi aku ka mālama.

Hoʻopili nui ka kūlana i nā kāne, ʻoiai hiki i nā wahine ke lilo i nā mea lawe a i kekahi manawa e ʻike i nā hōʻailona māmā. Aia mai ka hānau ʻana mai, akā ʻaʻole paha e ʻike ʻia nā hōʻailona a hiki i ka wā ma hope i ke kamaliʻi i ka wā e lilo ai nā keiki i mea ʻoi aku ka hana.

He aha nā ʻAno o ka Hemophilia?

ʻElua mau ʻano nui o ka hemophilia, i hana ʻia kēlā me kēia e ka nele i nā clotting factors like ʻole. ʻO ka Hemophilia A ka ʻano maʻamau loa, e hoʻopilikia ana i kahi 80% o nā kānaka me kēia kūlana. Hana ia i ka wā ʻaʻole lawa kāu kino e hana i ka protein factor VIII.

ʻO ka Hemophilia B, i kapa ʻia hoʻi ʻo ka maʻi Kalikimaka, e hana ia i ka wā e nalowale ai ʻoe a i ʻole nā ​​pae haʻahaʻa o ka protein factor IX. Hoʻopili like nā ʻano ʻelua i nā hōʻailona like, akā pono lākou i nā ala lapaʻau like ʻole no ka mea e pili ana lākou i nā clotting factors like ʻole.

Hiki i kēlā me kēia ʻano ke māmā, waena, a i ʻole koʻikoʻi ma muli o ka nui o ka clotting factor e hana ai kāu kino. Loaʻa i nā hihia koʻikoʻi ma lalo o 1% o nā pae clotting factor maʻamau, ʻoiai hiki i nā hihia māmā ke loaʻa 5-40% o nā pae maʻamau.

He aha nā Hōʻailona o ka Hemophilia?

ʻO ka hōʻailona nui ka koko e lōʻihi ana ma mua o ka maʻamau ma hope o nā hōʻeha a i ʻole nā ​​kaʻina hana lapaʻau. Hiki iā ʻoe ke ʻike i ka lōʻihi o ka hoʻopau ʻana i ke koko i nā ʻoki liʻiliʻi, a i ʻole e palahalaha loa ʻoe mai nā kīkē liʻiliʻi.

Eia nā hōʻailona nui e nānā ai, e hoʻomaka ana me nā mea maʻamau loa:

• Nā ʻeha nui, hohonu e ʻike maʻalahi ʻia mai nā kīkē liʻiliʻi
• Ke koko e hoʻomau ana no ka manawa lōʻihi ma hope o nā ʻoki a i ʻole ka hana niho
• Nā ihu koko pinepine e paʻakikī ke hoʻopau
• ʻEha hui a me ka pehu, ʻoi aku ka nui ma nā kuli, nā kuʻekuʻe, a me nā kuʻekuʻe wāwae
• Ke koko i loko o ka mimi a i ʻole ka poop
• Nā manawa menstrual kaumaha i nā wahine e lawe ana i ka gene

Hiki i ke koko kūloko i loko o nā hui a me nā ʻiʻo ke hoʻokumu i ka ʻeha nui a me ka pehu. Hiki paha i kēia ʻano koko ke hana me ka ʻole o ka hōʻeha maopopo, ʻoi aku ka nui i nā hihia koʻikoʻi. He mea hopohopo loa ka hui koko no ka mea hiki i nā hanana hou ke hōʻino i ka hui ma hope o ka manawa.

I nā hihia kakaikahi akā koʻikoʻi, hiki ke koko i loko o ka lolo a i ʻole nā ​​mea koʻikoʻi ʻē aʻe. ʻOi aku kēia ma hope o nā hōʻeha poʻo a pono e loaʻa ka mālama lapaʻau koke. ʻO nā hōʻailona e komo pū ana i nā poʻo ʻeha nui, ka luaʻi, ka huikau, a i ʻole ka nāwaliwali ma kekahi ʻaoʻao o ke kino.

He aha nā Kumu o ka Hemophilia?

Hana ʻia ka Hemophilia e nā mutations genetic e hoʻopilikia ana i ka hana ʻana o nā clotting factors. Hoʻoilina ʻia kēia mau mutations, ʻo ia hoʻi, ua hoʻoili ʻia mai nā mākua i nā keiki ma o nā genes i loaʻa ma ka chromosome X.

No ka mea he chromosome X hoʻokahi wale nō i nā kāne, pono lākou i hoʻokahi kope o ka gene mutated e hoʻomohala i ka hemophilia. Loaʻa i nā wahine ʻelua mau chromosome X, no laila pono lākou i nā mutations ma nā mea ʻelua e loaʻa ai ke kūlana piha, ʻo ia hoʻi ka mea kakaikahi loa.

Ma kahi o ʻelua hapaha o nā hihia i hoʻoilina ʻia mai nā mākua e lawe ana i ka gene. Eia naʻe, ma kahi o hoʻokahi hapaha o nā hihia e hana ia ma muli o nā mutations genetic kūlohelohe, ʻo ia hoʻi ʻaʻohe moʻolelo ʻohana o ke kūlana.

Hoʻopili kūikawā ka hoʻololi genetic i nā ʻōlelo aʻo a kāu kino e hoʻohana ai e hana i nā clotting factors VIII a i ʻole IX. Me ka lawa ʻole o kēia mau protein, e haki ʻia ke kaʻina hana clotting koko maʻamau, e alakaʻi ana i ke koko lōʻihi.

I ka wā e ʻike ai i ke Kauka no ka Hemophilia?

Pono ʻoe e ʻimi i ka mālama lapaʻau koke inā ʻike ʻoe i nā hōʻailona o ke koko koʻikoʻi. ʻO kēia e komo pū ana i nā poʻo ʻeha nui ma hope o ka hōʻeha poʻo, ke koko nui ʻaʻole e hoʻopau, a i ʻole nā ​​hōʻailona o ke koko kūloko e like me ke koko i loko o ka mimi a i ʻole ka poop.

No nā pilikia e hoʻomau nei, e ʻike i kāu kauka inā ʻike ʻoe i nā ʻano bruising maʻamau ʻole, nā ihu koko pinepine, a i ʻole ka ʻeha hui a me ka pehu me ka ʻole o ke kumu maopopo. Pono e loiloi ʻia nā keiki e palahalaha loa a i ʻole nā ​​hanana koko ma hope o nā hōʻeha liʻiliʻi.

Inā loaʻa iā ʻoe kahi moʻolelo ʻohana o ka hemophilia a ke hoʻolālā nei ʻoe e loaʻa nā keiki, hiki i ka ʻōlelo aʻo genetic ke kōkua iā ʻoe e hoʻomaopopo i nā pilikia. Hiki i nā wahine e lilo i mea lawe ke loaʻa ka ho'āʻo e hoʻomaopopo i kā lākou pae clotting factor.

He mea nui ka mālama pilikia no kekahi hōʻeha poʻo, trauma nui, a i ʻole ke koko ʻaʻole e pane i nā ana mua kōkua maʻamau. Mai kali e ʻike inā e hoʻopau ke koko ma luna o kona iho i kēia mau kūlana.

He aha nā Pilikia no ka Hemophilia?

ʻO ka hōʻino hui kekahi o nā pilikia lōʻihi loa i ka wā e koko pinepine ai i nā hui like. Ma hope o ka manawa, hiki i kēia ke alakaʻi i ka maʻi ʻaʻai, ka ʻeha mau loa, a me ka hoʻemi ʻana i ka neʻe inā ʻaʻole i mālama pono ʻia.

Eia nā pilikia nui e hiki ke hoʻomohala:

• Ka hōʻino hui mau loa mai nā hanana koko hou
• ʻEha mau loa a me ka neʻe palena
• Ke koko ʻiʻo e hiki ke hoʻopili i nā aʻalolo
• Ka maʻi mai nā hoʻoili koko (kakaikahi me ka nānā hou)
• Ka hoʻomohala ʻana o nā mea pale e hoʻoliʻiliʻi i ka lapaʻau

ʻO nā mea pale nā ​​antibodies i hoʻomohala ʻia e kāu ʻōnaehana pale i kekahi manawa e kūʻē i nā lapaʻau clotting factor. Hana kēia i kahi 20-30% o nā kānaka me ka hemophilia A koʻikoʻi a hoʻoliʻiliʻi i ka lapaʻau.

I nā hihia kakaikahi, hiki i nā hanana koko koʻikoʻi ke hoʻoweliweli i ke ola, ʻoi aku ka nui i ka wā e hana ai lākou i loko o ka lolo, ka ʻāʻī, a i ʻole nā ​​wahi koʻikoʻi ʻē aʻe. Eia naʻe, me ka lapaʻau a me ka mālama pono, hiki ke pale ʻia a mālama pono ʻia ka hapa nui o nā pilikia.

Pehea ka Diagnosis o ka Hemophilia?

Hoʻokomo maʻamau ka diagnosis i nā ho'āʻo koko e ana i kāu pae clotting factor a pehea ka maikaʻi o ka clotting o kāu koko. E hoʻomaka kāu kauka me ka helu koko piha a me nā ho'āʻo e ana i ka manawa clotting.

Hiki i nā assays factor kūikawā ke hoʻoholo i ka clotting factor e nele a pehea ka koʻikoʻi o ka nele. Ana kēia mau ho'āʻo i ka pae hana o nā factors VIII a me IX i loko o kāu koko.

Hiki i ka ho'āʻo genetic ke ʻike i ka mutation kūikawā e hana ana i ka hemophilia a kōkua i nā hoʻoholo hoʻolālā ʻohana. Hiki i kēia ho'āʻo ke hoʻoholo inā he mau mea lawe nā lālā wahine o ka ʻohana o ka gene.

Inā loaʻa kahi moʻolelo ʻohana, hiki ke hana ʻia ka ho'āʻo i ka wā hāpai ma o ka amniocentesis a i ʻole ka chorionic villus sampling. ʻAʻole maʻamau ka nānā ʻana i nā pēpē hou, akā ua manaʻo ʻia ka ho'āʻo inā loaʻa ka moʻolelo ʻohana i ʻike ʻia.

He aha ka Lapaʻau no ka Hemophilia?

Hoʻokomo ka lapaʻau nui i ka hoʻololi ʻana i nā clotting factors nalowale ma o nā inikini. Hiki ke hāʻawi ʻia kēia mau concentrates factor maʻamau e pale aku i nā hanana koko a i ʻole ma ka noi i ka wā e koko ai.

ʻO ka lapaʻau prophylactic ke manaʻo o ka loaʻa ʻana o nā inikini factor maʻamau e mālama i nā pae clotting lawa. Kōkua kēia ala e pale aku i ke koko kūlohelohe a me ka hōʻino hui, ʻoi aku ka nui i nā kānaka me ka hemophilia koʻikoʻi.

Hoʻokomo ka lapaʻau ma ka noi i ka hāʻawi ʻana i nā concentrates factor wale nō i ka wā e koko ai. Hiki paha kēia ala ke kūpono no nā kānaka me ka hemophilia māmā a waena paha ʻaʻole i loaʻa nā hanana koko pinepine.

ʻO nā lapaʻau hou e komo pū ana i nā factors lōʻihi-hana e pono ai nā inikini liʻiliʻi a me nā therapies non-factor e hana like ʻole e hoʻoikaika i ke clotting. Loaʻa i kekahi poʻe ka pono mai nā lāʻau lapaʻau e kōkua i ka pale ʻana i ka haki ʻana o nā clots koko.

Pehea e lawe ai i ka Lapaʻau Home i ka wā Hemophilia?

Ua aʻo ka nui o nā kānaka me ka hemophilia e hāʻawi iā lākou iho i nā inikini factor ma ka home. ʻAe kēia i ka lapaʻau wikiwiki i ka wā e koko ai a hoʻoliʻiliʻi i ka lapaʻau prophylactic.

E mālama i kahi pahu kōkua mua i hoʻolako maikaʻi ʻia me nā concentrates factor, nā syringes, a me nā lako ʻē aʻe. E hōʻoia i ka ʻike o nā lālā ʻohana i ka ʻike ʻana i nā hanana koko a me ka wā e ʻimi ai i ka mālama pilikia.

E kau i ka hau a me ke kaomi i nā wahi koko i ka wā e hoʻomākaukau ai i ka lapaʻau factor. E hoʻokiʻekiʻe i ka wahi i hoʻopilikia ʻia inā hiki a pale aku i nā lāʻau lapaʻau e like me ka aspirin e hiki ke hoʻonui i ka pilikia koko.

E mālama i kahi diary koko e hahai i nā hanana, nā lapaʻau, a me nā pane. Kōkua kēia ʻike i kāu hui mālama ola e hoʻoponopono i kāu papahana lapaʻau a ʻike i nā ʻano.

Pehea e pale aku ai i ka Hemophilia?

No ka mea he kūlana genetic ka hemophilia, ʻaʻole hiki ke pale aku iā ia ma ke ʻano maʻamau. Eia naʻe, hiki i ka ʻōlelo aʻo genetic a me ka ho'āʻo ke kōkua i nā ʻohana e hana i nā hoʻoholo ʻike e pili ana i ka loaʻa ʻana o nā keiki.

Hiki i nā mea lawe ke hele i ka ho'āʻo e hoʻoholo i kā lākou pilikia kūpono e hoʻoili i ke kūlana i kā lākou mau keiki. Loaʻa ka ho'āʻo prenatal no nā ʻohana me ka moʻolelo hemophilia i ʻike ʻia.

ʻO ka mea hiki iā ʻoe ke pale aku he mau pilikia koko ma o ka mālama pono. ʻO ka lapaʻau prophylactic maʻamau, ka pale ʻana i nā hana pilikia kiʻekiʻe, a me ka mālama ʻana i ka mālama niho maikaʻi e kōkua i ka hoʻemi ʻana i nā hanana koko.

ʻO ka noho hou ʻana me nā inikini a me ka mālama ʻana i ke olakino maikaʻi holoʻokoʻa e kōkua i ka pale ʻana i nā maʻi e hiki ke hoʻopilikia i ka mālama ʻana i ka hemophilia.

Pehea ʻoe e hoʻomākaukau ai no kāu Hālāwai Kauka?

Ma mua o kāu hālāwai, e hōʻiliʻili i ka ʻike e pili ana i kekahi moʻolelo ʻohana o nā maʻi koko. E kākau i nā nīnau kūikawā e pili ana i nā hōʻailona, ​​nā koho lapaʻau, a me nā hoʻololi nohona.

E lawe mai i kahi papa inoa o nā lāʻau lapaʻau a pau a me nā mea hoʻohui āu e lawe nei, me nā huahana over-the-counter. E mālama i ka moʻolelo o nā hanana koko hou, me ka wā i hana ai lākou a pehea ka lōʻihi o lākou.

E hoʻomākaukau e kūkākūkā i kāu pae hana a me nā palena āu i ʻike ai. Pono kāu kauka e hoʻomaopopo i ke ʻano o ka hemophilia i kou ola i kēlā me kēia lā e hāʻawi i nā lapaʻau kūpono.

E noʻonoʻo e lawe mai i kahi lālā ʻohana a hoaaloha paha no ke kākoʻo a e kōkua i ka hoʻomanaʻo ʻana i ka ʻike nui i kūkākūkā ʻia i ka wā hālāwai.

He aha ka lawe ʻana i ka Hemophilia?

ʻO ka Hemophilia kahi kūlana genetic hiki ke mālama ʻia e hoʻopilikia ana i ke clotting koko, akā ʻaʻole pono ia e kaupalena nui i kou ola. Me ka mālama lapaʻau kūpono, lapaʻau, a me nā hoʻoponopono nohona, hiki i ka hapa nui o nā kānaka me ka hemophilia ke ola i nā ola piha, hana.

He mea nui ka ʻike mua a me ka lapaʻau kūpono no ka pale ʻana i nā pilikia e like me ka hōʻino hui. ʻO ka hana pili kokoke me kahi hui mālama ola kūikawā e kōkua i ka hōʻoia ʻana e loaʻa iā ʻoe nā lapaʻau maikaʻi loa i loaʻa.

ʻO ke kī ka hoʻomaopopo ʻana i kāu ʻano a me ke koʻikoʻi o ka hemophilia, a laila e hoʻomohala i kahi papahana lapaʻau piha e kūpono i kou nohona. Kūkulu nā nānā maʻamau a me nā hoʻoponopono i kāu mālama ma hope o ka manawa.

Nā Nīnau Pinepine e pili ana i ka Hemophilia

Hiki i nā kānaka me ka hemophilia ke pāʻani i nā haʻuki?

ʻAe, hiki i nā kānaka he nui me ka hemophilia ke komo i nā haʻuki me nā palekana kūpono. ʻOi aku ka palekana o nā hana haʻalulu haʻahaʻa e like me ka ʻauʻau, ka holo, a me ka tenisi. Pono nā haʻuki hoʻopili i ka noʻonoʻo akahele a me ke kūkākūkā me kāu hui mālama ola e pili ana i nā ana palekana hou aʻe a me nā hoʻoponopono lapaʻau.

He mea hoʻopilikia anei ka hemophilia?

ʻAʻole, ʻaʻole he mea hoʻopilikia ka hemophilia. He kūlana genetic ia āu i hānau ʻia ai, ʻaʻole he maʻi e hiki ke pālahalaha mai ke kanaka a i ke kanaka. ʻAʻole hiki iā ʻoe ke hopu i ka hemophilia mai ke noho ʻana kokoke i kahi kanaka i loaʻa ia a i ʻole mai ke komo koko.

Hiki i nā wahine ke loaʻa ka hemophilia?

ʻOiai he mea kakaikahi, hiki i nā wahine ke loaʻa ka hemophilia inā hoʻoilina lākou i nā genes mutated mai nā mākua ʻelua. ʻOi aku ka maʻamau, he mau mea lawe nā wahine e hiki ke ʻike i nā hōʻailona koko māmā. Hiki i nā mea lawe wahine ke loaʻa nā pilikia koko, ʻoi aku ka nui i ka wā menstruation, hānau keiki, a i ʻole ka ʻoki.

Pehea ka lōʻihi o ke ola ʻana o nā kānaka me ka hemophilia?

Me ka lapaʻau hou, hiki i nā kānaka me ka hemophilia ke loaʻa nā manaʻolana ola maʻamau a kokoke i ka maʻamau. ʻO ke kī ka loaʻa ʻana o ka mālama lapaʻau kūpono, ka hahai ʻana i nā papahana lapaʻau, a me ka mālama ʻana i ke kūlana proactive e pale aku i nā pilikia.

Loaʻa anei ka lāʻau lapaʻau no ka hemophilia?

I kēia manawa, ʻaʻohe lāʻau lapaʻau no ka hemophilia, akā he mea maikaʻi loa nā lapaʻau i ka mālama ʻana i ke kūlana. Hōʻike ka noiʻi gene therapy i ka manaʻolana no ka wā e hiki mai ana, a ua hōʻike kekahi mau ho'āʻo klinika i nā hopena hoʻoikaika no ka hāʻawi ʻana i nā hoʻonā lapaʻau lōʻihi.