Kaʻi lawe Fibrosis Cystic: He aha kāu e ʻike ai

Anter

• E hānau ʻia kaʻu keiki me ka cystic fibrosis?
• Hoʻokumu paha ka cystic fibrosis i ka hānau ʻole?
• E loaʻa paha iaʻu kekahi mau hōʻailona inā wau he hāpai?
• Pehea ka maʻamau o nā halihali cystic fibrosis?
• Aia kekahi mau lapaʻau no ka cystic fibrosis?
• Outlook
• Pehea e hiki ai iaʻu ke hoʻāʻo no CF?

He aha ka mea lawe cystic fibrosis lawe?

ʻO Cystic fibrosis kahi maʻi hoʻoilina e pili ana i nā glands e hana i ka mucus a me ka hou. Hānau ʻia paha nā keiki me ka cystic fibrosis inā hāpai kēlā me kēia makua i hoʻokahi ʻāpana hewa no ka maʻi. ʻO kekahi me hoʻokahi gen CF maʻamau a hoʻokahi gene CF hewahewa i ʻike ʻia ma ke ʻano he halihali cystic fibrosis. Hiki iā ʻoe ke lawe a ʻaʻole maʻi iā ʻoe iho.

ʻIke ka hapa nui o nā wahine he mau halihali lākou ke lilo lākou, a i ʻole ke hoʻāʻo nei e lilo i wahine. Inā he halihali pū kā lāua hoa, hānau ʻia paha kā lāua keiki me ka maʻi.

E hānau ʻia kaʻu keiki me ka cystic fibrosis?

Inā ʻo ʻolua a me kāu hoa lawe ʻelua, makemake paha ʻoe e hoʻomaopopo i ka hānau ʻia ʻana o kāu keiki me ka fibrosis cystic. Ke loaʻa i kahi pēpē CF he pēpē, aia kahi 25 pakeneka manawa e hānau ʻia kā lāua pēpē me ka maʻi a he 50 pākēneka ka manawa e lawe ai kā lākou pēpē i kahi hoʻololi gen CF, akā ʻaʻohe o lākou maʻi. Hoʻokahi o nā keiki ʻehā ʻaʻole e lawe a ʻaʻohe maʻi. No laila ke uhaʻi nei i ke kaulahao o ka hoʻoilina.

Hoʻoholo ka nui o nā kāne lawe e hana i kahi hoʻowalewale loiloi i kā lākou embryos, i kapa ʻia ʻo preimplantation genetic diagnosis (PGD). Hana ʻia kēia hōʻike ma mua o ka hāpai ʻana ma nā embryos i loaʻa ma o ka vitro fertilization (IVF). I ka PGD, hoʻokahi a ʻelua paha mau pūnaewele e lawe ʻia mai kēlā me kēia embryo a kālailai ʻia e hoʻoholo inā pēpē ka:

• he fibrosis cystic
• he mea lawe i ka maʻi
• ʻAʻohe o lākou ʻaoʻao hemahema

ʻAʻole ka hopena o ka lawe ʻana o nā hunaola i nā embryo. Ke ʻike ʻoe i kēia ʻike e pili ana i kāu embryos, hiki iā ʻoe ke hoʻoholo i ka mea i hoʻokomo ʻia i loko o kāu kōpū me ka lana o ka manaʻo e hāpai ana kahi hāpai.

Hoʻokumu paha ka cystic fibrosis i ka hānau ʻole?

ʻAʻole ʻike nā wahine hāpai i CF i nā pilikia infertility ma muli o ia. ʻO kekahi mau kāne lawe i kahi ʻano infertility. Hoʻokumu ʻia kēia infertility e kahi kahe i nalowale, i kapa ʻia ʻo vas deferens, nāna e lawe i ka sperm mai nā testicle i loko o ka peni. Loaʻa i nā kāne me kēia hōʻailona ka koho o ka loaʻa ʻana o kā lākou sperm i kahi lāʻau. Hiki ke hoʻohana ʻia ka sperm e hoʻokomo i kā lākou hoa ma o kahi lapaʻau i kapa ʻia ʻo intracytoplasmic sperm injection (ICSI).

I ka ICSI, hoʻokomo ʻia kahi sperm hoʻokahi i kahi hua manu. Inā kū ka momona, hoʻokomo ʻia ka embryo i loko o ka wahine o ka wahine, ma o ka hoʻouluulu vitro. ʻOiai ʻaʻole nā ​​kāne āpau i nā lawe o CF i nā pilikia infertility, he mea nui e hoʻāʻo ʻia nā hoa ʻelua no ka ʻaoʻao hemahema.

ʻOiai ʻo ʻolua he mau hāpai, hiki iā ʻoe ke loaʻa nā keiki olakino.

E loaʻa paha iaʻu kekahi mau hōʻailona inā wau he hāpai?

Nui nā halihali CF i asymptomat, ʻo ia hoʻi ʻaʻohe o lākou hōʻailona. Ma kahi o hoʻokahi ma 31 mau ʻAmelika he mea lawe i nā ʻōuli o kahi ʻāpana CF hemahema. ʻIke nā halihali ʻē aʻe i nā ʻōuli, maʻa mau. ʻO nā hōʻailona me:

• nā pilikia hanu, e like me ka bronchitis a me ka sinusitis
• pancreatitis

Pehea ka maʻamau o nā halihali cystic fibrosis?

Loaʻa nā halihali cystic fibrosis i kēlā me kēia lāhui. ʻO kēia nā helu i manaʻo ʻia no ka lawe ʻana i nā ʻohana gen CF ma United States e ka lāhui.

• Poʻe keʻokeʻo: hoʻokahi ma 29
• Nā Hispanics: hoʻokahi i 46
• Kanaka ʻeleʻele: hoʻokahi ma 65
• ʻAmelika ʻAmelika: hoʻokahi ma 90

Nānā ʻole i kou lāhui a inā he moʻolelo ʻohana kāu o ka cystic fibrosis, pono ʻoe e hoʻāʻo.

Aia kekahi mau lapaʻau no ka cystic fibrosis?

ʻAʻohe lāʻau lapaʻau no ka cystic fibrosis, akā hiki i nā koho nohona, nā hoʻoponopono, a me nā lāʻau ke kōkua i ka poʻe me CF e ola i nā ola piha, ʻoiai nā pilikia a lākou e kū nei.

Hoʻopili mua ka Cystic fibrosis i ka ʻōnaehana hanu a me ka tract digestive. Hiki i nā ʻōuli ke kau i ka paʻakikī a hoʻololi i ka manawa. Hana kēia i ka pono no ka hoʻomaʻamaʻa proactive a me ka nānā ʻana mai nā loea loea i mea nui. He mea koʻikoʻi ka mālama ʻana i nā pale ʻana i kēia lā a me ka mālama ʻana i kahi kū ʻole i ka uahi.

Mālama ka hana maʻamau i:

• ka mālama pono ʻana i ka meaʻai
• ka pale ʻana a i ʻole ka mālama ʻana i nā poli ʻōpū
• ke kāpae ʻana i ka huehue mai nā akemāmā
• pale ʻana i ka maʻi

Kauoha pinepine nā kauka i nā lāʻau e hoʻokō i kēia mau pahuhopu lapaʻau, e like me:

• antibiotics e pale a mālama i ka maʻi, ka mea nui i nā akemāmā
• nā enzymes pancreatic waha e kōkua i ka digestion
• nā lāʻau lapaʻau mucus-lahilahi e kākoʻo i ka hemo ʻana a me ka hemo ʻana o ka mucus mai nā akemāmā ma o ka hoʻoheʻe ʻana

ʻO nā hana maʻamau ʻē aʻe e pili ana i nā bronchodilator, kahi e kōkua ai e hāmama nā ala ākea, a me ke olakino kino no ka umauma. Hoʻohana ʻia nā paipu hānai i kekahi manawa i ka pō e kōkua i ka hōʻoia ʻana i ka hoʻohana ʻana o ka calorie kūpono.

ʻO ka poʻe me nā ʻōuli koʻikoʻi e pōmaikaʻi pinepine mai nā kaʻina hana, e like me ka hemo ʻana o ka nasal polyp, ke kahakaha ʻana o ka ʻōpū, a me ka lawe ʻana o ka hanu.

Ke hoʻomau nei ka hoʻomaikaʻi ʻana no CF a me lākou pū ka maikaʻi a me ka lōʻihi o ke ola no ka poʻe i loaʻa.

Outlook

Inā makemake ʻoe e lilo i makua a ʻike he lawe ʻoe, he mea nui e hoʻomanaʻo he mau koho kāu a me ka kaohi i ke kūlana.

Pehea e hiki ai iaʻu ke hoʻāʻo no CF?

Paipai ka ʻAmelika Hui Pū ʻIa o nā Obstetricians a me nā Gynecologists (ACOG) e hāʻawi i ka kānana lawe no nā wahine a me nā kāne āpau e makemake e lilo i mau mākua. ʻO ka loiloi ʻo Carriers kahi hana maʻalahi. Pono ʻoe e hoʻolako i kahi koko a i ʻole hāpana lawaiʻa, i loaʻa ma o ka swab waha. E hoʻouna ʻia ka laʻana i kahi keʻena hoʻokolohua no ka loiloi a hāʻawi i ka ʻike e pili ana i kāu ʻikepili (DNA) a e hoʻoholo inā lawe ʻoe i kahi hoʻololi o ka ʻāpana CF.