He aha ka Cystic Fibrosis? Nā Hōʻailona, Nā Kumu, & Lapaʻau

ʻO ka cystic fibrosis kahi kūlana genetic e pili ana i ke ʻano o ka hana ʻana o kou kino i ka mucus a me ka sweat. Ma mua o ka hana ʻana i ka mucus lahilahi, palalū e kōkua ana i ka pale ʻana i kou mau kino, hana nā kānaka me ka cystic fibrosis i ka mucus mānoanoa, pipili e hiki ke pani i nā ala nui i loko o nā māmā a me ka ʻōnaehana digestive.

He mea kēia kūlana i hānau ʻia ʻoe me ia, i hoʻoili ʻia ma o nā ʻohana ma o nā gene mai nā mākua ʻelua. ʻOiai he kūlana koʻikoʻi ia no ke ola holoʻokoʻa, hiki i ka hoʻomaopopo maikaʻi ʻana iā ia ke kōkua iā ʻoe a i ʻole kou poʻe aloha e hoʻokele maikaʻi a ola i nā ola piha.

He aha ka Cystic Fibrosis?

Hana ka cystic fibrosis i ka wā ʻaʻole hana pono nā kope ʻelua o kahi gene kikoʻī i kapa ʻia ʻo CFTR. ʻO kēia gene maʻamau ke kōkua i ka hoʻokele ʻana i ke kaulike o ka paʻakai a me ka wai i loko o kou mau cell. I ka wā he hemahema ia, hana kou kino i nā mea huna mānoanoa, pipili maʻamau ʻole.

E noʻonoʻo i ka mucus maʻamau e like me kahi pale pale e paheʻe maʻalahi. I ka cystic fibrosis, lilo kēia mucus i mea e like me ka pā hao mānoanoa. Hoʻopili nui kēia i kou mau māmā a me ka ʻōnaehana digestive, ʻoiai hiki ke komo pū nā kino ʻē aʻe.

Hoʻopili ka kūlana i kahi 1 i 2,500 a 3,500 mau pēpē hou, e lilo ana i kekahi o nā maʻi genetic koʻikoʻi maʻamau loa. Hoʻopili ia i nā kānaka o nā ʻano āpau, ʻoiai ʻike pinepine ʻia ia i nā poʻe o ka Northern European descent.

He aha nā Hōʻailona o ka Cystic Fibrosis?

Hiki i nā hōʻailona o ka cystic fibrosis ke ʻokoʻa loa mai ke kanaka a i ke kanaka, a pinepine lākou e hilinaʻi ana i nā kino i hoʻopilikia nui ʻia. Loaʻa i kekahi poʻe nā hōʻailona māmā e ulu mālie ana, ʻoiai ʻike kekahi i nā pilikia ʻike ʻia ma mua i ke ola.

Eia nā hōʻailona nui āu e ʻike ai i ka ʻōnaehana hanu:

• Ka ʻōhū mau loa e hoʻopuka ana i ka mimi mānoanoa, pipili.
• ʻO ka maʻi nui o ka māmā e like me ka pneumonia a i ʻole ka bronchitis.
• ʻO ka wheezing a i ʻole ka hanu pōkole i ka wā o nā hana o kēlā me kēia lā.
• Ihu ʻāʻī a i ʻole nā maʻi sinus hou.
• Nā polyps nasal (nā ulu liʻiliʻi i loko o ka ihu).

Hiki i nā hōʻailona o ka ʻōpū ke like nui ka mea nui e ʻike ai:

• Nā wai ʻaila, nui nā ʻōpala e paʻakikī ke holoi.
• ʻAʻole nui ka kaupaona ʻana ʻoiai he makemake maikaʻi ka ʻai.
• Ka constipation nui, ʻoi aku hoʻi i nā pēpē.
• ʻEha ʻōpū a i ʻole ka pupule ma hope o ka ʻai.
• ʻIli paʻakai ke honi a i ʻole ke pā ʻana i ke kanaka.

Loaʻa nō hoʻi i kekahi poʻe nā hōʻailona maʻamau ʻole e hiki ke ulu i ka manawa. Hiki i kēia ke komo pū me ka maʻi diabetes (ʻoiai hiki ke hoʻopilikia ʻia ka pancreas), nā pilikia o ke ake, a i ʻole nā pilikia hānau keiki i ka wā makua. ʻO ka mea nui e hoʻomanaʻo ai, ʻo ka ʻike mua ʻana a me ka mālama ʻana e hana i kahi ʻokoʻa nui i ka hoʻokele pono ʻana i kēia mau hōʻailona.

He aha nā ʻAno o ka Cystic Fibrosis?

ʻAʻole maoli ka cystic fibrosis i nā ʻano ʻokoʻa ma ke ʻano kuʻuna, akā hoʻokaʻawale nā kauka ia ma muli o nā hōʻailona i ʻoi aku ka nui. Kūleʻa kēia iā lākou e hana i ka papahana mālama maikaʻi loa no kēlā me kēia kūlana o kēlā me kēia kanaka.

ʻO ka hoʻokaʻawale maʻamau loa e nānā ana i nā ʻōnaehana kino nui i hoʻopilikia ʻia. Loaʻa i kekahi poʻe nā hōʻailona pili i ka māmā, me nā maʻi hanu pinepine a me nā pilikia hanu e lilo ana i nā pilikia nui. Hiki i nā mea ʻē aʻe ke loaʻa nā pilikia ʻoi aku ka nui o ka ʻōpū, me nā pilikia e hoʻomoʻa ana i nā meaʻai a me ka mālama ʻana i ke kaupaona olakino.

He nui nā kānaka e ʻike i ka hui pū ʻana o nā hōʻailona hanu a me ka ʻōpū. Aia kekahi ʻano maʻamau ʻole kahi e loaʻa ai i nā kānaka nā hōʻailona māmā ʻole e ʻike ʻia paha a hiki i ka wā makua. Loaʻa pinepine i kēia poʻe ka hana māmā maikaʻi akā pono paha lākou i ka mālama mau a me ka nānā ʻana.

He aha ka mea e hoʻokumu ai i ka Cystic Fibrosis?

Hoʻokumu ʻia ka cystic fibrosis e nā loli (mutations) ma kahi gene i kapa ʻia ʻo CFTR, kahi kūlana no ka Cystic Fibrosis Transmembrane Conductance Regulator. Kūleʻa kēia gene maʻamau i ka hoʻokele ʻana i ke ala o ka paʻakai a me ka wai e komo a puka mai i loko o kou mau cell.

No ka loaʻa ʻana o ka cystic fibrosis i kekahi kanaka, pono lākou e hoʻoilina i hoʻokahi kope hewa o kēia gene mai kēlā me kēia mākua. Inā hoʻoilina wale ʻoe i hoʻokahi kope hewa, kapa ʻia ʻoe he "mea lawe" akā ʻaʻole pinepine e loaʻa nā hōʻailona iā ʻoe iho. Eia naʻe, hiki iā ʻoe ke hoʻoili i kēlā gene hewa i kāu mau keiki.

Aia ma mua o 1,700 mau mutations like ʻole e hiki ke hoʻopilikia i ka gene CFTR, ʻoiai ʻoi aku ka nui o kekahi ma mua o nā mea ʻē aʻe. ʻO ka mutation pinepine loa, i kapa ʻia ʻo F508del, e pili ana i ka 70% o nā hihia ma ka honua holoʻokoʻa. Hiki i kēlā me kēia mutation ke hoʻopilikia i ka nui o ka hopena o ke kūlana i ke olakino o kekahi.

He kūlana genetic wale kēia, ʻo ia hoʻi ʻaʻole i hana ʻia e kekahi mea i hana ai nā mākua a ʻaʻole i hana i ka wā hāpai. ʻAʻole hoʻi ia he mea hoʻopilikia, no laila ʻaʻole hiki iā ʻoe ke hopu mai kekahi a hoʻolaha aku i nā poʻe ʻē aʻe.

I ka Wā e ʻIke ai i ke Kauka no ka Cystic Fibrosis?

Pono ʻoe e hoʻokaʻaʻike i kahi mea mālama ola inā ʻike ʻoe i nā hōʻailona hanu a ʻai paha e mau loa ana, ʻoi aku hoʻi i nā keiki. Pono ka mālama lapaʻau i kahi ʻōhū e lōʻihi ana ma mua o kekahi mau pule, e hoʻopuka ana i ka mucus mānoanoa, a i ʻole e hoʻi hou mai.

E hoʻolohe nui i nā hōʻailona ʻulaʻula o ka ʻai e like me nā stools i ʻaila loa, e lana ana i loko o ka pā halepaku, a i ʻole he ʻala ikaika. ʻO ka loaʻa ʻole o ke kaumaha i nā keiki ʻoiai e ʻai maikaʻi ana he hōʻailona nui ʻē aʻe e pono ʻole ke nānā ʻole.

Inā loaʻa iā ʻoe ka mōʻaukala ʻohana o ka cystic fibrosis, hiki i ka ʻōlelo aʻo genetic ke kōkua iā ʻoe e hoʻomaopopo i kāu mau pilikia ma mua o ka hoʻolālā ʻana i ka hāpai ʻana. Loaʻa i nā kāne he nui kēia ʻike e kōkua i ka hana ʻana i nā hoʻoholo kūpono e pili ana i kā lākou hoʻolālā ʻohana.

No ka poʻe i ʻike mua ʻia, he mea nui nā nānā maʻamau ʻoiai ke ʻoluʻolu. Hoʻomaʻamaʻa pinepine ka mālama mua ʻana i nā pilikia i nā pilikia ʻoi aku ka nui ma hope.

He aha nā mea pilikia no ka cystic fibrosis?

ʻO ka mea pilikia nui loa no ka cystic fibrosis, ʻo ia ka loaʻa ʻana o nā mākua ʻelua i ka gene CFTR kīnā. Ma muli o kahi kūlana genetic recessive kēia, pono nā mākua ʻelua ke hāʻawi mai i kahi kope o ka gene mutated no ka ulu ʻana o ke keiki i ka maʻi.

He kuleana ko ka lāhui i nā pae pilikia, ʻoiai hiki i ka cystic fibrosis ke hoʻopili i nā kānaka o kēlā me kēia ʻano:

• ʻO nā Caucasian mai ʻEulopa ʻĀkau ka mea kiʻekiʻe loa ka pilikia (ma kahi o 1 i 25 mau kānaka he mau mea hāpai)
• ʻO nā ʻAmelika Hispanic he 1 i 46 ka nui o ka poʻe hāpai
• ʻO nā ʻAmelika ʻApelika he 1 i 65 ka nui o ka poʻe hāpai
• ʻO nā ʻAmelika ʻAsia ka mea haʻahaʻa loa ka nui o ka poʻe hāpai ma kahi o 1 i 90

ʻO ka loaʻa ʻana o kahi lālā ʻohana me ka cystic fibrosis e hoʻonui i kou manawa e lilo ai i mea hāpai. Inā ʻoe e hoʻolālā ana i kahi ʻohana a loaʻa iā ʻoe nā manaʻo e pili ana i nā pilikia genetic, ʻo ka kamaʻilio ʻana me kahi kākāʻōlelo genetic e hāʻawi i nā ʻike waiwai a me ka maluhia o ka manaʻo.

He aha nā pilikia hiki ke loaʻa mai ka cystic fibrosis?

ʻOiai ke manaʻo nei i nā pilikia hiki ke manaʻo nui, ʻo ka hoʻomaopopo ʻana iā lākou e kōkua iā ʻoe e hana pū me kāu hui olakino e pale aku ai a mālama pono iā lākou. ʻO ka hapa nui o nā pilikia e ulu mālie ana a hiki ke mālama ʻia ke hopu ʻia i ka wā mua.

ʻO nā pilikia hanu pinepine ka mea hopohopo loa:

• Nā maʻi hanu lōʻihi e hiki ke hōʻino i ka ʻiʻo o ka māmā i ka manawa lōʻihi
• Māmā hiolo (pneumothorax) mai ka ea e pakele ana i loko o ka ʻōpū umauma
• Hāʻule o ka hanu i nā hihia holomua
• Sinusitis lōʻihi a me nā polyps nasal

Hiki i nā pilikia o ka ʻōnaehana digestive ke hoʻopilikia nui i ka meaʻai a me ka maikaʻi o ke ola:

• Ka nele o ka pancreas, e paʻakikī ai ka hoʻoheheʻe ʻana i nā momona a me nā protein
• Ka maʻi diabetes i ka wā hiki ʻole i ka pancreas ke hana i ka insulin lawa
• Ka maʻi ate mai nā ducts bile i pani ʻia
• Nā pilikia o ka ʻōpū, ʻoi aku hoʻi i nā pēpē hou
• Nā nele meaʻai nui ʻoiai ke ʻai maikaʻi nei

ʻO nā pilikia ʻē aʻe, ʻaʻole pinepine akā nui ko lākou manaʻo, e komo pū ana nā pilikia iwi (osteoporosis), nā pilikia hānau keiki i nā kāne a me nā wāhine, a me ka maloʻo nui o ke kino i ka wā wela a i ʻole maʻi. ʻO ka mea ʻoluʻolu, me ka mālama lapaʻau kūpono, nui nā kānaka me ka cystic fibrosis e ola maikaʻi a hiki i ko lākou wā makua a ola i nā ola hana a me ka piha.

Pehea e pale ʻia ai ka Cystic Fibrosis?

Ma muli o ka mea hoʻoilina ke kūlana o ka cystic fibrosis, ʻaʻole hiki ke pale ʻia ma ke ʻano maʻamau. Eia naʻe, hiki i ka ʻōlelo aʻo a me ka hoʻokolohua hoʻoilina ke kōkua i nā mākua e ʻike i ko lākou mau pilikia a hana i nā hoʻoholo naʻauao e pili ana i ka hoʻolālā ʻohana.

Inā ʻoe e hoʻolālā ana i ka hāpai ʻana a loaʻa iā ʻoe ka mōʻaukala ʻohana o ka cystic fibrosis, hiki i ka nānā ʻana i nā mea lawe ke hoʻoholo inā ʻoe a me kāu hoa e lawe pū ana i ka gene. Hiki i kēia hoʻokolohua koko maʻalahi ke hāʻawi i ka ʻike waiwai no nā hoʻoholo hoʻolālā ʻohana.

No nā kāne a me nā wahine kahi mea lawe ʻelua, nā koho e komo pū ana ka hoʻokolohua prenatal i ka wā hāpai, ka hoʻoholo ʻana i ka gene ma mua o ka hoʻokomo ʻana i ka hua manu me ka in vitro fertilization, a i ʻole ka hoʻohana ʻana i nā hua manu a i ʻole nā sperm mai ka mea hāʻawi. Hiki i ka mea aʻo hoʻoilina ke kōkua iā ʻoe e hoʻomaopopo i kēia mau koho me ka ʻole o ke kaomi a i ʻole ka hoʻohewa.

Nui nā mokuʻāina i kēia manawa e komo pū ana i ka cystic fibrosis i nā papahana nānā hou, ʻo ia hoʻi ka ʻike mua ʻana a me ka mālama ʻana e hoʻomaka koke inā hānau ʻia kahi pēpē me ke kūlana.

Pehea ka Diagnosia ʻana o ka Cystic Fibrosis?

ʻO ka diagnosia ʻana i ka cystic fibrosis e komo pinepine ana i kekahi mau hoʻokolohua e hana pū ana e hāʻawi i nā kauka i kahi kiʻi maopopo. ʻO ka hoʻokolohua sweat ka mea nui loa a ana i ka nui o ka paʻakai i loko o kou sweat.

I ka wā o ka hoʻokolohua sweat, hoʻoulu ʻia kahi wahi liʻiliʻi o ka ʻili (ma ka lima pinepine) e hana i ka sweat me ka uila māmā. A laila, ʻohi ʻia ka sweat a nānā ʻia no ka nui o ka paʻakai. Nui loa ka paʻakai o nā kānaka me ka cystic fibrosis ma mua o ka maʻamau.

Hiki i ka ho'okolohua gene ke ʻike i nā hoʻololi kūikawā i loko o ka gene CFTR. He mea kōkua loa kēia ke maopopo ʻole nā hopena o ka ho'okolohua sweat a i ʻole kekahi moʻolelo ʻohana ikaika o ke kūlana. Hiki i nā ho'okolohua koko ke ʻike i nā hoʻololi gene maʻamau e pili ana i ka cystic fibrosis.

ʻO nā ho'okolohua hou aku paha e komo pū ai nā ho'okolohua hana māmā e ʻike ai i ka hana maikaʻi o kou mau māmā, nā X-ray umauma e nānā i ka hōʻino ʻana o nā māmā, a me nā laʻana ʻōpala e nānā i nā pilikia digestive. Hiki i kāu kauka ke kauoha aku i nā ho'okolohua e nānā i ka hana o kāu pancreas a me ke kūlana waiwai holoʻokoʻa.

He aha ka lāʻau lapaʻau no ka Cystic Fibrosis?

ʻO ka lāʻau lapaʻau no ka cystic fibrosis e kaulike ana i ka mālama ʻana i nā hōʻailona, ​​ka pale ʻana i nā pilikia, a me ka mālama ʻana i ka maikaʻi o ke ola. ʻOiai ʻaʻohe lāʻau lapaʻau, ua holomua loa nā lāʻau lapaʻau a ke hoʻomau nei i ka holomua.

ʻO ka hoʻomaʻemaʻe airway he pōhaku kumu ia o ka mālama hanu. ʻO kēia ka hana a me nā mea hana e kōkua ai e hoʻoluolu a wehe i ka mucus mānoanoa mai nā māmā. E aʻo aku kāu hui olakino iā ʻoe i nā hana hanu kūikawā a hiki paha ke ʻōlelo aku i nā mea hana e like me nā vests haʻalulu a i ʻole nā oscillators lima.

He kuleana nui nā lāʻau lapaʻau i ka mālama ʻana i ke kūlana:

• Kōkua nā mea hoʻonāwaliwali mucus e maʻalahi ka hoʻōhū ʻana i nā secretions
• Wehe nā bronchodilators i nā ala hanu no ka hanu maʻalahi
• Ho'ēmi nā lāʻau lapaʻau anti-inflammatory i ka mumū o nā māmā
• Mālama a pale nā antibiotics i nā maʻi māmā
• Kōkua nā CFTR modulators (nā lāʻau hou) i ka hana maikaʻi ʻana o ka protein hemahema

Hoʻokomo pinepine ka mālama digestive i nā mea hoʻohui enzyme pancreatic i lawe ʻia me nā meaʻai e kōkua i ka hoʻoheheʻe pono ʻana i nā meaʻai. Pono pinepine nā huaora soluble-fat (A, D, E, a me K) ʻoiai he pilikia ka hoʻomoʻa ʻana iā lākou ma ke ʻano maoli.

He mea nui ka kākoʻo meaʻai, pinepine e pono ai ka ʻai nui-calorie, nui-momona e mālama i ke kaumaha olakino. ʻO ka hana pū ʻana me ka meaʻai i hoʻopaʻa inoa ʻia i ʻike i ka cystic fibrosis hiki ke hoʻolilo i kahi ʻokoʻa nui i ka hoʻokele pono ʻana i nā pono meaʻai.

Pehea e lawe ai i ka mālama home i ka wā o ka Cystic Fibrosis?

ʻO ka hoʻokele ʻana i ka cystic fibrosis ma ka home e pono ai ka hoʻokumu ʻana i nā hana i kēlā me kēia lā e lilo i mea maʻamau e like me ka holoi ʻana i kou niho. ʻO ke kī ʻo ka kūpaʻa ma mua o ka hemolele, a ʻo nā hana liʻiliʻi i kēlā me kēia lā e hoʻohui i nā hoʻomaikaʻi nui ma hope o kekahi manawa.

Pono e hana ʻia ka hoʻomaʻemaʻe airway ma ka liʻiliʻi ʻelua manawa i kēlā me kēia lā, ʻoiai paha e ʻōlelo aku kāu kauka i nā hālāwai pinepine i ka wā o ka maʻi. E ʻimi i nā ʻano hana e kūpono i kou ola, inā paha ia e hoʻohana ana i ka vest haʻalulu i ka wā e nānā ana i ke kīwī a i ʻole e hana ana i nā hana hanu i loko o ka ua.

He mea nui ka noho wai, ʻoi aku hoʻi i ka wā wela a i ʻole ke maʻi ʻoe. E nalowale ana kou kino i ka paʻakai ma mua o ka maʻamau, no laila e pono paha ʻoe e hoʻohui i ka paʻakai hou i kāu ʻai a i ʻole e hoʻohana i nā hopena hoʻōla wai waha i ka wā o ka maʻi a i ʻole ka hou ʻana o ka hou.

He mea pōmaikaʻi loa ka hoʻoikaika kino no ka hana o nā māmā a me ke olakino holoʻokoʻa. ʻO ka ʻauʻau, ka hele wāwae, ka holo paikikala, a i ʻole kekahi hana āu e leʻaleʻa ai hiki ke kōkua i ka hoʻoluhi ʻana i ka mucus a me ka hoʻoikaika ʻana i kou mau ʻiʻo hanu. E hoʻomaka mālie a kūkulu mālie me ke alakaʻi a kāu kauka.

E mālama i kahi diary hōʻailona e hahai i nā ʻano i kou olakino. E hoʻomaopopo i nā loli i ka ʻūhū, nā pae ikehu, a i ʻole ka makemake. E kōkua kēia ʻike i kāu hui mālama olakino e hoʻoponopono i nā lāʻau a hopu i nā pilikia i ka wā mua.

Pehea ʻoe e hoʻomākaukau ai no kāu hālāwai kauka?

ʻO ka hoʻomākaukau ʻana no kāu hālāwai e kōkua iā ʻoe e hana i ka hapa nui o kou manawa me kāu hui mālama olakino. E hoʻomaka ma ka kākau ʻana i nā hōʻailona āu i ʻike ai mai kāu kipa hope loa, me ka wā i hoʻomaka ai lākou a me nā mea e hoʻomaikaʻi ai a ʻoi aku ka maikaʻi.

E lawe mai i ka papa inoa o nā lāʻau lapaʻau a pau, nā mea hoʻohui, a me nā hana mālama āu e hoʻohana nei i kēia manawa. E hoʻokomo i ka pinepine o kāu lawe ʻana a me nā hopena ʻaoʻao āu i ʻike ai. Mai poina e haʻi aku i nā lāʻau lapaʻau ma luna o ka papa kūʻai a me nā mea hoʻohui mea kanu pū kekahi.

E hoʻomākaukau i nā nīnau ma mua, i ʻole ʻoe e poina i nā manaʻo nui i ka wā o ka hālāwai. ʻO nā nīnau maʻamau paha e pili ana i ka nīnau ʻana e pili ana i nā hana mālama hou, ke kūkākūkā ʻana i nā palena hana, a i ʻole ke hoʻomaopopo ʻana i nā ʻōlelo aʻo lāʻau lapaʻau.

Inā hiki, e lawe mai i kahi hoa ʻohana a hoaaloha paha e kōkua i ka hoʻomanaʻo ʻana i ka ʻike i kūkākūkā ʻia i ka wā o ka kipa. Hiki i nā hālāwai lapaʻau ke manaʻo nui, a ʻo ka loaʻa ʻana o ke kākoʻo e kōkua iā ʻoe e hoʻoponopono i nā mea āpau me ka maikaʻi.

E hōʻiliʻili i nā hopena hoʻokolohua a i ʻole nā ​​moʻolelo lapaʻau mai nā mea hoʻolako ʻē aʻe mai kou kipa hope loa. Hāʻawi kēia i kāu kauka i kahi kiʻi piha o kou kūlana olakino i kēia manawa a me nā loli i hana ʻia.

He aha ka lawe nui e pili ana i ka Cystic Fibrosis?

ʻO ka cystic fibrosis kahi kūlana genetic koʻikoʻi, akā ʻaʻole ia he pale i ka noho ʻana i kahi ola ʻano, hana. Me ka mālama lapaʻau kūpono, nā hana hoʻokele i kēlā me kēia lā, a me nā ʻōnaehana kākoʻo ikaika, nui nā kānaka me ka cystic fibrosis e alualu i ka hoʻonaʻauao, nā ʻoihana, nā pilina, a me nā hana a lākou e makemake nui ai.

ʻO ka mea nui loa e hoʻomanaʻo ai, ʻo ka ʻike mua a me ka mālama mau e hana i kahi ʻokoʻa nui i nā hopena lōʻihi. Inā kānalua ʻoe i ka cystic fibrosis iā ʻoe iho a i kahi mea aloha paha, ʻo ka ʻimi ʻana i ka loiloi lapaʻau koke e hiki ke hoʻonohonoho i ke kahua no ka hoʻokele olakino maikaʻi.

Ke hoʻomau nei ka noiʻi e lawe mai i ka manaʻolana hou, me ka hoʻomaikaʻi mau ʻana i nā hana mālama a me ka loaʻa ʻana o nā lāʻau lapaʻau hou. He ikaika a kākoʻo ka hui cystic fibrosis, e hāʻawi ana i nā kumuwaiwai a me nā pilina e hiki ai ke hoʻemi i ka hoʻokaʻawale.

E hoʻomanaʻo ʻia, ʻo ka mālama ʻana i ka cystic fibrosis he hana hui ia e komo pū ana ʻoe, kou ʻohana, a me nā mea mālama ola. ʻO ke kamaʻilio ākea, ka mālama mau, a me ka noʻonoʻo mau ʻana i kou kūlana nā mea hana maikaʻi loa no ke ola maikaʻi me ka cystic fibrosis.

Nā Nīnau Pinepine e pili ana i ka Cystic Fibrosis

Hiki i nā mākua ke loaʻa ka cystic fibrosis ma hope i ke ola?

ʻAʻole, ʻo ka cystic fibrosis kahi kūlana genetic i hānau ʻia ʻoe. Eia naʻe, aia kekahi poʻe i loaʻa nā ʻano palupalu ʻaʻole i ʻike ʻia a hiki i ka wā makua. Loaʻa paha i kēia poʻe nā hōʻailona iki no nā makahiki i manaʻo ʻia he mau kūlana ʻē aʻe e like me ka asthma a i ʻole nā ​​maʻi hanu hou.

Ke hoʻolaha nei anei ka cystic fibrosis?

ʻAʻole hoʻolaha ʻia ka cystic fibrosis iho no ka mea he kūlana genetic ia. Eia naʻe, ʻoi aku ka maʻalahi o nā poʻe me ka cystic fibrosis i kekahi mau maʻi bacteria, a hiki i kēia mau bacteria ke pālahalaha i waena o nā poʻe me ka cystic fibrosis. ʻO ia ke kumu he mea nui nā hana pale ʻana i nā maʻi i nā wahi mālama ola a me nā kaiāulu CF.

Hiki i nā poʻe me ka cystic fibrosis ke loaʻa nā keiki?

Hiki i nā poʻe he nui me ka cystic fibrosis ke loaʻa nā keiki, ʻoiai hiki ke hoʻopilikia ʻia ka hānau ʻana. Ma kahi o 95% o nā kāne me ka cystic fibrosis he pilikia i ka hānau ʻana ma muli o nā duct sperm i pani ʻia, akā hiki i nā ʻenehana hoʻohua kōkua ke kōkua pinepine. Loaʻa paha i nā wāhine me ka cystic fibrosis ka hānau ʻana i emi iki, akā hiki pinepine ke hāpai maoli me ka mālama ola kūpono.

He aha ka lōʻihi o ke ola no kekahi me ka cystic fibrosis?

Ua holomua nui ka lōʻihi o ke ola i nā makahiki he nui i hala. I kēia manawa, ʻo ka makahiki ola waena i wānana ʻia aia ma waena o 40 mau makahiki a ke hoʻomau nei i ka piʻi ʻana i ka hoʻomaikaʻi ʻana o nā lāʻau lapaʻau. He nui nā mea e hoʻopilikia i nā hopena pilikino, e komo pū ana i ka hoʻomaka ʻana o ka mālama ʻana, ke komo ʻana i ka mālama kūikawā, a me ka mālama ola holoʻokoʻa.

Pono anei nā poʻe me ka cystic fibrosis e pale aku i kekahi mau hana?

ʻO ka hapanui o ka poʻe me ka cystic fibrosis, paipai ʻia lākou e noho ikaika, no ka mea, he pono ka hoʻoikaika kino no ka hana o nā māmā. Akā naʻe, pono e hoʻololi ʻia nā hana ma muli o ka hana o nā māmā a me ke olakino holoʻokoʻa. He hana maikaʻi pinepine ka ʻauʻau, ʻoiai paha e pono ke kaupalena ʻia nā hana ma nā wahi lepo a i ʻole haumia. Hiki i kāu hui mālama ola ke hāʻawi i nā ʻōlelo aʻo hana pilikino.