Aia kekahi hoola no Cystic Fibrosis?

Anter

• ʻImi noiʻi
• Hoʻoponopono pani pani
• Nā modulator CFTR
• DNA i hoʻohaʻahaʻa ʻia
• Ka hanana
• Nā pilikia
• Nā pilikia hanu
• Nā pilikia kūpala
• Nā pilikia ʻē aʻe
• Outlook
• Komo pū ʻana
• Nā hui noiʻi
• Nā hoʻāʻo hoʻokolohua

Hōʻike Overview

ʻO Cystic fibrosis (CF) kahi maʻi hoʻoilina e hōʻino ai i kou mau māmā a me ka ʻōnaehana digestive. Hoʻopili ka CF i nā hunaola o ke kino e hana i ka mucus. Pono kēia mau wai e lubricate i ke kino a lahilahi a lahilahi. Hana ʻo CF i kēia mau kino o ke kino i ka lahilahi a pili, kahi e kūkulu ai i loko o nā akemāmā, nā ala ea, a me nā wahi digestive.

ʻOiai ka holomua o ka noiʻi ʻana i hoʻomaikaʻi nui i ka maikaʻi o ke ola a me ke ola o ka poʻe me CF, pono ka hapanui e mālama i ke ʻano no ko lākou ola holoʻokoʻa. I kēia manawa, ʻaʻohe mea ola no CF, akā ke hana nei nā mea noiʻi i hoʻokahi. E aʻo e pili ana i ka noiʻi hou loa a me ka mea e hiki koke ke loaʻa i ka poʻe me CF.

ʻImi noiʻi

E like me nā kūlana he nui, hāʻawi kālā ʻia ka noiʻi ʻo CF e nā ʻoihana hoʻolaʻa e hōʻiliʻili kālā, hoʻopaʻa kālā, a me ka hakakā no nā hāʻawi e hoʻomau i nā mea noiʻi e hana nei i kahi lāʻau. Eia kekahi o nā māhele nui o ka noiʻi i kēia manawa.

Hoʻoponopono pani pani

He mau makahiki i hala aku nei, ua ʻike ka poʻe noiʻi i ka ʻāpana i kuleana no CF. ʻO ia ka mea i ulu ai ka manaʻolana e hiki i ka genetic replacement therapy ke hoʻololi i ka gen defective in vitro. Eia naʻe, ʻaʻole i holo pono kēia kālaila.

Nā modulator CFTR

I nā makahiki i hala aku nei, ua hoʻomohala nā mea noiʻi i kahi lāʻau e kuhikuhi i ke kumu o CF, ma mua o kāna mau hōʻailona. ʻO kēia mau lāʻau, ivacaftor (Kalydeco) a me lumacaftor / ivacaftor (Orkambi), kahi ʻāpana o ka papa o nā lāʻau i ʻike ʻia ma ke ʻano he mea hoʻoponopono cystic fibrosis transmembrane conductance (CFTR). Hoʻonohonoho ʻia kēia papa lāʻau e hoʻohuli i ka gen mutated nāna ke kuleana no CF a hana iā ia e hana pono i nā wai o ke kino.

DNA i hoʻohaʻahaʻa ʻia

Hiki ke kiʻi ʻia i kahi ʻano hanauna gen hou kahi i holo pono ʻole ai nā lāʻau kūʻauhau. Hoʻohana kēia loea hou loa i nā mole i inhaled o DNA e hāʻawi i nā kope "maʻemaʻe" o ka gen i nā hunaola i nā akemāmā. I nā hoʻokolohua mua, ua hōʻike nā mea maʻi i hoʻohana i kēia lapaʻau i ka hoʻomaikaʻi ʻana i nā ʻōuli haʻahaʻa. Hōʻike kēia breakthrough i nā hoʻohiki nui no ka poʻe me CF.

ʻAʻole kekahi o kēia mau ʻano lapaʻau i mea hoʻōla maoli, akā ʻo lākou nā ʻanuʻu nui loa e pili ana i kahi ola me ka maʻi ʻole i ʻike ʻia e ka poʻe me CF.

Ka hanana

I kēia lā, ʻoi aku ka nui o 30,000 poʻe e noho nei me CF ma United States. He maʻi laha ʻole ia - ma kahi o ka 1000 mau kānaka i ʻike ʻia i kēlā me kēia makahiki.

ʻElua mau kumu pilikia nui e hoʻonui i ka manawa o ke kanaka e ʻike ʻia me CF.

• Mōʻaukala ʻohana: ʻO CF kahi ʻano hoʻoilina hoʻoilina. I nā huaʻōlelo ʻē aʻe, holo i loko o nā ʻohana. Hiki i nā kānaka ke hāpai i ka ʻāpana no CF me ka loaʻa ʻole o ka maʻi. Inā loaʻa kahi keiki i nā mea lawe ʻelua, loaʻa i kēlā keiki kahi 1 i ka 4 loaʻa ka loaʻa iā CF. Hiki nō paha i kā lāua keiki ke hāpai i ka ʻāpana no CF akā ʻaʻohe ona maʻi, a ʻaole loaʻa ka ʻāpana iki.
• Heihei: Hiki i CF ke hana i nā lāhui āpau. Eia nō naʻe, he mea maʻamau ia i ka poʻe Caucasian me nā kūpuna mai ʻEulopa ʻEulopa.

Nā pilikia

Hāʻule pinepine nā pilikia o CF i ʻekolu mau ʻāpana. Aia kēia mau ʻāpana a me nā pilikia i:

Nā pilikia hanu

ʻAʻole wale kēia nā pilikia o CF, akā ʻo kekahi o nā mea maʻamau:

• Poino o Airway: hoʻopōʻino ʻo CF i kāu ala kaʻa. ʻO kēia ʻano, i kapa ʻia he bronchiectasis, he mea paʻakikī ka hanu ʻana i loko a i waho. Hana ia i ka hoʻomaʻemaʻe i nā ake māmā o ka mucus mānoanoa, pilū paʻakikī.
• Nā polyps ihu: hana pinepine ʻo CF i ka mumū a me ka pehu ʻana i ka uhi o kāu mau ihu. Ma muli o ka pehu, hiki i nā ulu o ke kino (polyps) ke ulu. Hoʻonui ka polyps i ka hanu ʻana.
• Nā maʻi maʻa mau: ʻo ka mānoanoa, mucus sticky ka wahi hānau nui no nā bacteria. Hoʻonui kēia i kāu mau pilikia no ka hoʻomohala ʻana i ka niumonia a me ka bronchitis.

Nā pilikia kūpala

Hoʻopilikia ʻo CF i ka hana maʻamau o kāu ʻōnaehana digestive. ʻO kēia kekahi o nā hōʻailona digestive maʻamau:

• Hoʻopili i ka ʻōpū: ʻoi aku ka nui o ka pilikia o nā kānaka me CF no ka pale ʻana o ka ʻōpū ma muli o ka mumū ma muli o ka maʻi.
• Nā hemahema Nutritional: ʻO ka mucus mānoanoa, pākuʻi i hoʻokumu ʻia e CF hiki ke pale i kāu ʻōnaehana digestive a pale i nā wai e pono ai no ka lawe ʻana i nā mea momona mai kou hele ʻana i kāu ʻōpū. Me ka ʻole o kēia mau wai, e hele ana ka meaʻai i loko o kāu ʻōnaehana digestive me ka ʻole o ke komo. Mālama kēia iā ʻoe mai ka loaʻa ʻana o kahi keu olakino.
• Diabetes: ʻO ka mucus mānoanoa, pākuʻi i hana ʻia e CF scars ka pancreas a pale iā ia mai ka hana kūpono. Pale paha kēia i ke kino mai ka hana ʻana i ka nui o ka insulin. Hoʻohui ʻia, hiki iā CF ke pale i kou kino mai ka pane kūpono ʻana i ka insulin. Hiki i nā pilikia ʻelua ke kumu i ka maʻi diabetes.

Nā pilikia ʻē aʻe

Ma waho o nā pilikia hanu a me ka digestive, hiki i ka CF ke hana i nā pilikia ʻē aʻe i ke kino, e like me:

• Nā pilikia o ka hānau: kokoke pinepine ʻole nā ​​kāne me CF. ʻO kēia no ka mea o ka mucus mānoanoa e ālai pinepine i ka paipu e lawe i ka wai mai ka gland prostate i nā testes. ʻOi aku ka momona o nā wahine me CF ma mua o nā wahine me ka maʻi ʻole, akā hiki i nā mea he nui ke hānau keiki.
• Osteoporosis: ʻO kēia ʻano, ka mea e kumu ai nā iwi lahilahi, he mea maʻamau i ka poʻe me CF.
• Dehydration: hana ʻo CF i ka mālama ʻana i kahi kaulike maʻamau o nā minelala i loko o kou kino. Hiki i kēia ke kumu i ka make wai, a me kahi kaulike electrolyte.

Outlook

I nā makahiki i hala aku nei, ua hoʻomaikaʻi nui ʻia ka nānā no nā poʻe i ʻike ʻia me CF. I kēia manawa ʻaʻole ia he mea mau no ka poʻe me CF e noho i ko lākou 20s a me 30s. Hiki i kekahi ke ola hou aku.

I kēia manawa, ke kau nei nā lāʻau lapaʻau no CF i ka hoʻohaʻahaʻa ʻana i nā hōʻailona a me nā ʻōuli o ke ʻano a me nā hopena ʻaoʻao o nā mālama. Hoʻopaʻa pū kekahi i nā mālama ʻana e pale i nā pilikia mai ka maʻi, e like me nā maʻi bacteria.

ʻOiai me ka noiʻi hoʻohiki e hoʻomau ʻia nei, nā mālama hou a i ʻole nā ​​hoʻōla hou no CF mau makahiki paha ka lōʻihi. Pono nā mālama hou i mau makahiki o ka noiʻi a me nā hoʻokolokolo ma mua o ka ʻae ʻana o nā ʻoihana kiaʻāina e ʻae i nā haukapila a me nā kauka e hāʻawi iā lākou i nā maʻi.

Komo pū ʻana

Inā loaʻa iā CF, ʻike i ka mea i loaʻa iā CF, a i ʻole makemake nui wale i ka ʻimi ʻana i kahi lāʻau no kēia maʻi, maʻalahi loa ke komo ʻana i ke kākoʻo ʻana i ka noiʻi.

Nā hui noiʻi

Hāʻawi kālā ʻia ka hapa nui o ka noiʻi e pili ana i nā hoʻōla CF hiki i nā hui e hana ma ka ʻaoʻao o ka poʻe me CF a me ko lākou mau ʻohana. ʻO ka hāʻawi ʻana iā lākou ka mea e kōkua ai i ka hoʻomau ʻana i ka noiʻi no kahi mea e ola ai. ʻO kēia mau hui pū:

• ʻO Cystic Fibrosis Foundation: ʻO CFF kahi ʻoihana ʻoi aku ka maikaʻi ʻoi aku ka maikaʻi ʻoihana ʻoihana e hana kālā kālā noiʻi no kahi hoʻōla a me nā lapaʻau kiʻekiʻe.
• Cystic Fibrosis Research, Inc .: CFRI kahi hui manawalea accredited. ʻO kāna pahuhopu nui ka waihona kālā noiʻi, hāʻawi i ke kākoʻo a me ka hoʻonaʻauao i nā mea maʻi a me nā ʻohana, a hoʻonui i ka ʻike no CF.

Nā hoʻāʻo hoʻokolohua

Inā loaʻa iā CF, hiki iā ʻoe ke koho i kahi hoʻokolohua hoʻokolohua. ʻO ka hapa nui o kēia mau hoʻokolohua hoʻokolohua e alakaʻi ʻia ma o nā haukapila noiʻi. Hiki i ke keʻena o kāu kauka ke pili me kekahi o kēia mau pūʻulu. Inā ʻaʻole lākou, hiki paha iā ʻoe ke kikoo aku i kekahi o nā ʻoihana i luna aʻe a hoʻopili ʻia i kahi loio e hiki ke kōkua iā ʻoe e loaʻa kahi hoʻokolokolo e hāmama a ʻae ana i nā mea komo.