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Loaʻa i kāu keiki kēia mau hōʻailona? E aʻo kākou e pili ana i ka Stickler Syndrome

Loaʻa i kāu keiki kēia mau hōʻailona? E aʻo kākou e pili ana i ka Stickler Syndrome

Loaʻa pinepine anei i kāu keiki liʻiliʻi nā pilikia maka, ka nalowale o ka lohe, a i ʻole ka ʻeha o nā hono? Malia paha ua hele pū kēia mau mea me kekahi mau loli o ka helehelena, he mea nui loa ia e ʻike i kēia kūlana a mākou e kamaʻilio nei i kēia lā. ʻOiai he inoa kēia i kamaʻāina ʻole iā ʻoe, he mea waiwai nui ia nou ma ke ʻano he makuahine a makua paha e ʻike i kēia kūlana. No ka mea, ʻo ka wikiwiki o kou ʻike ʻana iā ia, ʻoi aku ka nui o nā manawa kūpono e loaʻa iā ʻoe e kōkua i kāu keiki.

I ka ʻōlelo maʻalahi, he aha ka Stickler Syndrome?

ʻAe, e hoʻomaopopo maʻalahi kākou i kēia. E noʻonoʻo i ko kākou kino he hale i kūkulu nani ʻia. I loko o kēia hale, ʻo nā mea āpau e like me nā piliki, nā paia, a me ka hale he sima sima e hoʻopaʻa ana i nā mea āpau a hāʻawi iā lākou i ka ikaika a me ke ʻano, ʻeā? Pēlā nō, ʻo kēlā me kēia ʻōkana i loko o ko kākou kino e like me nā iwi, ka ʻili, nā maka, a me nā pepeiao he pūnaewele kūikawā o nā ʻiʻo e hoʻopaʻa ana i nā mea āpau a hāʻawi iā lākou i ka ikaika a me ka maʻalahi. Kāhea mākou i kēia mau ʻiʻo hoʻopili .

ʻO ka maʻi Stickler kahi maʻi i hoʻokumu ʻia e kahi kīnā i loko o nā genes e kuhikuhi ana i ka hana ʻana o nā ʻiʻo pili. E like me ka mea e hana ʻia i kahi hale i ka wā e emi ai ke ʻano o ka sima sima, i ka wā e nāwaliwali ai kēia ʻiʻo pili, hiki ke hoʻopilikia ʻia nā ʻāpana like ʻole o ko mākou kino, ʻoiai ka ulu ʻana o nā maka, nā pepeiao, nā hono, a me ka maka . He maʻi hoʻoilina kēia.

Pehea ka maʻamau o kēia ʻano?

ʻAʻole kēia he maʻi maʻamau loa. Wahi a nā helu helu, ʻike ʻia kēia ʻano ma kahi o hoʻokahi a ʻekolu paha o kēlā me kēia 7,500 a 10,000 mau pēpē hānau hou. Eia nō naʻe, i kekahi manawa he maalea loa kēia mau hōʻailona. No laila, aia kekahi mau hihia kahi i ʻike ʻole ʻia ai nā hōʻailona o kekahi mau keiki. No laila, ʻoi aku paha ka nui o nā maʻi ma ke kaiāulu ma mua o ka mea i hōʻike maoli ʻia.

He aha nā hōʻailona nui o kēia maʻi?

ʻO kēia ka ʻāpana koʻikoʻi loa. Hiki ke ʻokoʻa loa nā hōʻailona o ka maʻi Stickler mai kēlā kanaka a kēia kanaka. Loaʻa paha i kekahi poʻe kekahi mau hōʻailona wale nō, aʻo kekahi poʻe he nui. ʻOkoʻa nō hoʻi ke koʻikoʻi o nā hōʻailona. I mea e maʻalahi ai ke hoʻomaopopo, e hoʻokaʻawale kākou i kēia mau hōʻailona i nā ʻano.

Wahi i hoʻopilikia ʻia Nā hiʻohiʻona maʻamau i ʻike ʻia
Nā Maka (Māka)
  • ʻIke maka ʻole loa (ʻoi aku ka ʻike kokoke - myopia ).
  • He maʻi koʻikoʻi loa ka retina i hoʻokaʻawale ʻia, ka membrane koʻikoʻi ma ke kua o ka maka.
  • ʻO nā cataracts i ka wā ʻōpiopio.
  • Hoʻonui ʻia ke kaomi o nā maka ( glaucoma ).
Pepeiao a me ka lohe ʻana
  • ʻO ka nalowale o ka lohe o nā kekelē like ʻole. I kekahi manawa hiki ke hoʻonui ʻia kēia i ka hala ʻana o ka manawa.
  • Nā maʻi pepeiao pinepine.
  • Iwi a me ke ami
  • Nā hono hypermobile, ʻoi aku hoʻi i ka wā kamaliʻi.
  • ʻO ka paʻakikī a me ka ʻeha o nā hono i ka hala ʻana o ka manawa.
  • ʻO ka rumatika i ka wā ʻōpiopio loa.
  • ʻO ke skoliosis .
  • Ka pehu a me ka ʻeha o nā hono.
  • Nā ʻano helehelena
  • Lepe māwae .
  • He ʻuʻuku loa ka ʻāwae lalo a ua hoʻokomo ʻia i loko ( micrognathia ). He ʻāpana paha kēia o kahi kūlana i kapa ʻia ʻo ka moʻo Pierre Robin.
  • He helehelena pālahalaha a he ihu liʻiliʻi.
  • Nā hiʻohiʻona ʻē aʻe
  • Ke paʻakikī i ka omo ʻana i ka waiū i nā pēpē ʻōpio.
  • Paʻakikī i ka hanu ʻana ma muli o ka ʻāwae liʻiliʻi o lalo.
  • Nā pilikia aʻo ma muli o ka ʻike maka a me ka lohe.
  • ʻO ka mea nui, ʻaʻole i loaʻa kēia mau hōʻailona āpau i kēlā me kēia maʻi. Mai manaʻo ua loaʻa i kāu keiki kēia maʻi no ka mea he hoʻokahi a ʻelua paha o kēia mau mea iā lākou. Pono ʻoe e ʻimi i ka ʻōlelo aʻo a ke kauka.

    Aia kekahi mau ʻano like ʻole o ka maʻi Stickler?

    ʻAe, ua māhele ʻia kēia maʻi i kekahi mau ʻano nui ma muli o ka hoʻololi ʻana o ka genetic e hoʻokumu ai a me ke ʻano o nā hōʻailona. I kēia manawa, ua ʻike ʻia he 6 mau ʻano. Eia nō naʻe, ʻo nā ʻano mua ʻekolu ka mea maʻamau.

    • ʻAno I: ʻO kēia ke ʻano maʻamau. Hōʻike ʻia ia e ka myopia a me ka nalowale iki o ka lohe.
    • ʻAno II: Hele pū ʻia kēia me ka nalowale nui o ka lohe me ka hōʻino ʻana o ka ʻike.
    • ʻAno III: He mea maʻamau ka nalowale o ka lohe a me nā pilikia hono i kēia ʻano. ʻO ka mea kūikawā, ʻaʻole i hoʻopilikia ʻia nā maka i kēia ʻano.
    • ʻAno IV, V, a me VI: He mea kākaʻikahi loa kēia mau ʻano a hiki ke hoʻoulu i nā hopena koʻikoʻi ma nā maka, nā pepeiao, a me ka ʻōnaehana iwi.

    No ke aha lā kēia e hana nei? He aha ke kumu o kēia?

    E like me kaʻu i ʻōlelo ai ma mua, ʻo ke kumu nui o kēia he kīnā genetic. ʻO Collagen ka protein nui i loko o nā ʻiʻo pili o ko mākou kino. Ua like kēia collagen me ka "gum" o ke kino. Aia kekahi mau ʻano genes e kuhikuhi ana i ka hana ʻana o kēia collagen. No ka laʻana, `(COL2A1, COL11A1, COL11A2)`.

    He mutation a kīnā paha ko kekahi o kēia mau genes o ke kanaka me ka Stickler syndrome. ʻO ka hopena, ʻaʻole hiki i ke kino ke hana i ka collagen maikaʻi e pono ai. ʻO kēia ke kumu o nā pilikia a pau i ʻōlelo ʻia ma mua.

    Pehea e loaʻa ai i kahi keiki kēia?

    He mea hanauna kēia ma ke ʻano nui.

    • ʻO ka pinepine: Inā loaʻa i kekahi o nā mākua ka hoʻololi ʻana o ka gene, he 50% ka manawa kūpono o ke keiki e hoʻoilina iā ia. Kāhea mākou i kēia ʻo ke ʻano "autosomal dominant".
    • Kākaʻikahi: ʻOiai inā olakino nā mākua ʻelua, hiki iā lāua ʻelua ke lawe i ka gene mutated me ka ʻole o ka hōʻike ʻana i nā hōʻailona, ​​a hiki i ke keiki ke hoʻoilina i nā mea ʻelua a loaʻa i kēia maʻi (autosomal recessive).
    • Kākaʻikahi loa: I kekahi manawa hiki ke kū mai kēia ʻano ma ke ʻano he hoʻololi ʻana o ka genetics, me ka ʻole o kekahi o ka ʻohana i loaʻa.

    Pehea e ʻike ai i ka maʻi?

    Inā kānalua ʻoe ua loaʻa i kāu keiki kēia mau hōʻailona, ​​​​ke ʻike ʻoe i ke kauka, e holo ʻo ia i kekahi mau hoʻokolohua e hoʻāʻo e hōʻoia i ka maʻi.

    • Hoʻokolokolo kino piha: Nānā pono ke kauka i nā hiʻohiʻona o ke keiki, ka lehelehe luna, nā maka, nā pepeiao, a me nā hono.
    • Mōʻaukala lapaʻau ʻohana: He mea nui ka nīnau ʻana inā ua loaʻa i kekahi o ka ʻohana kēia mau hōʻailona no ka ʻike ʻana.
    • Nānā ʻana i ka ʻike maka a me ka lohe: Hana ʻia nā hoʻokolohua kūikawā e ke kauka maka a me ka loea pepeiao, ihu a me ka ʻāʻī.
    • Nā hoʻāʻo kiʻi:Hoʻohana ʻia nā hoʻokolohua e like me nā X-ray e nānā i kekahi mau kīnā o ke kuamoʻo a i ʻole nā ​​​​​​mea ʻino i nā hono.
    • Ka Hoʻāʻo ʻana i ka Genetic: ʻO kēia wale nō ke ala e hōʻoia pono ai i ka maʻi. Hiki ke lawe ʻia kahi hāpana koko e ʻike ai i ka hoʻololi ʻana o ka genetic e kumu ai.

    Pehea e mālama ʻia ai?

    ʻO ka mea mua, ʻaʻole hiki ke ho'ōla piha ʻia ka maʻi Stickler. No ka mea, he maʻi genetic ia. Akā, mai hopohopo. Aia nā lāʻau lapaʻau kūpono loa e kāohi i nā hōʻailona a me nā pilikia i hoʻokumu ʻia e kēia maʻi. Hoʻolālā ʻia ka lāʻau lapaʻau e like me nā hōʻailona o kēlā me kēia maʻi.

    • ʻOki kino: Pono paha ke ʻoki kino e hoʻoponopono i kahi palate māwae, e hoʻopili hou i kahi retina i hemo (pono e hana koke ʻia kēia), kōkua i nā pilikia hanu, a hoʻoponopono a pani paha i nā hono i hōʻino ʻia.
    • Nā Aniani a me nā Aniani Hoʻoponopono: Pono ka poʻe me nā pilikia o ka ʻike e hoʻohana i nā aniani a i ʻole nā ​​​​aniani hoʻopili.
    • Nā Mea Kōkua Hoʻolohe: He mea kōkua nui kēia no ka poʻe me ka nalowale o ka lohe.
    • Hoʻōla Kino: Paipai ʻia nā hoʻomaʻamaʻa kino e hoʻoikaika i nā ʻiʻo a puni nā hono, hoʻomaikaʻi i ka neʻe ʻana o nā hono, a hoʻemi i ka ʻeha.
    • Nā lāʻau hoʻopau ʻeha: E kuhikuhi ke kauka i ka lāʻau kūpono e kāohi i ka ʻeha o nā hono.
    • Lapaʻau niho a me ka orthodontic: Inā he mau pilikia me ke kūlana o nā niho, pono paha ka lāʻau.

    Hiki ke ola i kahi ola maʻamau me kēia maʻi?

    ʻAe, ʻoiaʻiʻo nō. ʻOiai ʻaʻohe lāʻau lapaʻau no kēia, ʻaʻole kēia maʻi e hoʻopilikia i ke ola o ke kanaka. ʻO ka mea nui loa, ʻo ia ka ʻike mua ʻana i nā hōʻailona, ​​​​​​e mālama pono iā lākou, a e launa mau me kāu kauka. Inā hana ʻia kēlā, hiki i ka hapa nui o ka poʻe ke ola maʻamau, ʻeleu, a me ke ola piha.

    ʻO kahi mea e hoʻomanaʻo ai, ʻo ia ka pale ʻia ʻana o nā haʻuki pili e like me ka rugby, ka pôpeku, a me ka mokomoko. No ka mea, ʻo kahi hahau liʻiliʻi i ke poʻo hiki ke hana i ka retinal detachment, hiki ke alakaʻi i ka nalowale mau loa o ka ʻike.

    I nā kūlana hea e pono ai ʻoe e ʻike i ke kauka?

    Inā loaʻa iā ʻoe a i ʻole kāu keiki kēia maʻi, e makaʻala i nā hōʻailona ma lalo nei. Inā ʻike ʻia kekahi o kēia mau mea, e ʻike koke i kāu kauka.

    • Inā loaʻa iā ʻoe ka ʻeha nui o nā hono .
    • Inā ʻike koke ʻoe i ka ʻike pohihihi, nā ʻālohilohi o ke kukui, nā mea lana, a i ʻole nā ​​aka i kou ʻike, he mau hōʻailona paha kēia o ka hemo ʻana o ka retina. He kūlana kēia e pono ai ke kōkua lapaʻau koke.
    • Inā pilikia ke keiki i ka ʻai ʻana a i ʻole ka inu ʻana.
    • Inā he koko, he wai e like me ka pus e puka mai ana mai kahi i ʻoki ʻia ai, he pehu, a he ʻulaʻula paha (he mau hōʻailona kēia o ka maʻi).
    • Inā pilikia ʻoe i ka hanu ʻana , e hele koke aku i ka Halemai Pilikia (ETU) kokoke loa me ka hoʻokaʻulua ʻole.

    Inā loaʻa kēia maʻi i kekahi o kou ʻohana, a ke hoʻolālā nei ʻoe e loaʻa kahi keiki, he mea nui loa ia e kamaʻilio me kāu kauka e pili ana i ka loaʻa ʻana o ke aʻo ʻana i nā ʻano hoʻoilina.

    Leka Lawe-Home

    • ʻO ka maʻi Stickler kahi maʻi genetic e hoʻopilikia i nā ʻiʻo pili o ke kino a hoʻoili ʻia i lalo i nā hanauna.
    • Hoʻopilikia nui ia i ka ulu ʻana o nā maka, nā pepeiao, nā hono, a me ka maka.
    • ʻAʻohe lāʻau lapaʻau piha no kēia, akā me ka mālama pono ʻana i nā hōʻailona, ​​​​hiki ke ola i kahi ola maʻamau a hana.
    • Inā loaʻa i kāu keiki kēia mau hōʻailona, ​​​​he mea nui loa e ʻike koke i ke kauka kūpono e ʻike pono i ka maʻi.
    • He mea nui e pale loa i nā haʻuki pili, no ka mea, kiʻekiʻe ka pilikia o ka hemo ʻana o ka retinal.

    ʻO ka Stickler Syndrome, ka maʻi genetic, ka maʻi pili o nā ʻiʻo, ka hemahema o ka ʻike, ka nalowale o ka lohe, ka ʻeha hui

    Frequently Asked Questions (FAQ)

    Pehea e loaʻa ai i kahi keiki kēia?

    He mea hanauna kēia ma ke ʻano nui.

    ⚠️ Important: The medical articles and information on Nirogi Lanka are for general awareness only, and are by no means a substitute for professional medical advice, diagnosis, or treatment. For any medical problem you have, consult a qualified physician immediately.

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    Loaʻa i kāu keiki kēia mau hōʻailona? E aʻo kākou e pili ana i ka Stickler Syndrome

    Loaʻa i kāu keiki kēia mau hōʻailona? E aʻo kākou e pili ana i ka Stickler Syndrome

    Loaʻa pinepine anei i kāu keiki liʻiliʻi nā pilikia maka, ka nalowale o ka lohe, a i ʻole ka ʻeha o nā hono? Malia paha ua hele pū kēia mau mea me kekahi mau loli o ka helehelena, he mea nui loa ia e ʻike i kēia kūlana a mākou e kamaʻilio nei i kēia lā. ʻOiai he inoa kēia i kamaʻāina ʻole iā ʻoe, he mea waiwai nui ia nou ma ke ʻano he makuahine a makua paha e ʻike i kēia kūlana. No ka mea, ʻo ka wikiwiki o kou ʻike ʻana iā ia, ʻoi aku ka nui o nā manawa kūpono e loaʻa iā ʻoe e kōkua i kāu keiki.

    I ka ʻōlelo maʻalahi, he aha ka Stickler Syndrome?

    ʻAe, e hoʻomaopopo maʻalahi kākou i kēia. E noʻonoʻo i ko kākou kino he hale i kūkulu nani ʻia. I loko o kēia hale, ʻo nā mea āpau e like me nā piliki, nā paia, a me ka hale he sima sima e hoʻopaʻa ana i nā mea āpau a hāʻawi iā lākou i ka ikaika a me ke ʻano, ʻeā? Pēlā nō, ʻo kēlā me kēia ʻōkana i loko o ko kākou kino e like me nā iwi, ka ʻili, nā maka, a me nā pepeiao he pūnaewele kūikawā o nā ʻiʻo e hoʻopaʻa ana i nā mea āpau a hāʻawi iā lākou i ka ikaika a me ka maʻalahi. Kāhea mākou i kēia mau ʻiʻo hoʻopili .

    ʻO ka maʻi Stickler kahi maʻi i hoʻokumu ʻia e kahi kīnā i loko o nā genes e kuhikuhi ana i ka hana ʻana o nā ʻiʻo pili. E like me ka mea e hana ʻia i kahi hale i ka wā e emi ai ke ʻano o ka sima sima, i ka wā e nāwaliwali ai kēia ʻiʻo pili, hiki ke hoʻopilikia ʻia nā ʻāpana like ʻole o ko mākou kino, ʻoiai ka ulu ʻana o nā maka, nā pepeiao, nā hono, a me ka maka . He maʻi hoʻoilina kēia.

    Pehea ka maʻamau o kēia ʻano?

    ʻAʻole kēia he maʻi maʻamau loa. Wahi a nā helu helu, ʻike ʻia kēia ʻano ma kahi o hoʻokahi a ʻekolu paha o kēlā me kēia 7,500 a 10,000 mau pēpē hānau hou. Eia nō naʻe, i kekahi manawa he maalea loa kēia mau hōʻailona. No laila, aia kekahi mau hihia kahi i ʻike ʻole ʻia ai nā hōʻailona o kekahi mau keiki. No laila, ʻoi aku paha ka nui o nā maʻi ma ke kaiāulu ma mua o ka mea i hōʻike maoli ʻia.

    He aha nā hōʻailona nui o kēia maʻi?

    ʻO kēia ka ʻāpana koʻikoʻi loa. Hiki ke ʻokoʻa loa nā hōʻailona o ka maʻi Stickler mai kēlā kanaka a kēia kanaka. Loaʻa paha i kekahi poʻe kekahi mau hōʻailona wale nō, aʻo kekahi poʻe he nui. ʻOkoʻa nō hoʻi ke koʻikoʻi o nā hōʻailona. I mea e maʻalahi ai ke hoʻomaopopo, e hoʻokaʻawale kākou i kēia mau hōʻailona i nā ʻano.

    Wahi i hoʻopilikia ʻia Nā hiʻohiʻona maʻamau i ʻike ʻia
    Nā Maka (Māka)
    • ʻIke maka ʻole loa (ʻoi aku ka ʻike kokoke - myopia ).
    • He maʻi koʻikoʻi loa ka retina i hoʻokaʻawale ʻia, ka membrane koʻikoʻi ma ke kua o ka maka.
    • ʻO nā cataracts i ka wā ʻōpiopio.
    • Hoʻonui ʻia ke kaomi o nā maka ( glaucoma ).
    Pepeiao a me ka lohe ʻana
  • ʻO ka nalowale o ka lohe o nā kekelē like ʻole. I kekahi manawa hiki ke hoʻonui ʻia kēia i ka hala ʻana o ka manawa.
  • Nā maʻi pepeiao pinepine.
  • Iwi a me ke ami
  • Nā hono hypermobile, ʻoi aku hoʻi i ka wā kamaliʻi.
  • ʻO ka paʻakikī a me ka ʻeha o nā hono i ka hala ʻana o ka manawa.
  • ʻO ka rumatika i ka wā ʻōpiopio loa.
  • ʻO ke skoliosis .
  • Ka pehu a me ka ʻeha o nā hono.
  • Nā ʻano helehelena
  • Lepe māwae .
  • He ʻuʻuku loa ka ʻāwae lalo a ua hoʻokomo ʻia i loko ( micrognathia ). He ʻāpana paha kēia o kahi kūlana i kapa ʻia ʻo ka moʻo Pierre Robin.
  • He helehelena pālahalaha a he ihu liʻiliʻi.
  • Nā hiʻohiʻona ʻē aʻe
  • Ke paʻakikī i ka omo ʻana i ka waiū i nā pēpē ʻōpio.
  • Paʻakikī i ka hanu ʻana ma muli o ka ʻāwae liʻiliʻi o lalo.
  • Nā pilikia aʻo ma muli o ka ʻike maka a me ka lohe.
  • ʻO ka mea nui, ʻaʻole i loaʻa kēia mau hōʻailona āpau i kēlā me kēia maʻi. Mai manaʻo ua loaʻa i kāu keiki kēia maʻi no ka mea he hoʻokahi a ʻelua paha o kēia mau mea iā lākou. Pono ʻoe e ʻimi i ka ʻōlelo aʻo a ke kauka.

    Aia kekahi mau ʻano like ʻole o ka maʻi Stickler?

    ʻAe, ua māhele ʻia kēia maʻi i kekahi mau ʻano nui ma muli o ka hoʻololi ʻana o ka genetic e hoʻokumu ai a me ke ʻano o nā hōʻailona. I kēia manawa, ua ʻike ʻia he 6 mau ʻano. Eia nō naʻe, ʻo nā ʻano mua ʻekolu ka mea maʻamau.

    • ʻAno I: ʻO kēia ke ʻano maʻamau. Hōʻike ʻia ia e ka myopia a me ka nalowale iki o ka lohe.
    • ʻAno II: Hele pū ʻia kēia me ka nalowale nui o ka lohe me ka hōʻino ʻana o ka ʻike.
    • ʻAno III: He mea maʻamau ka nalowale o ka lohe a me nā pilikia hono i kēia ʻano. ʻO ka mea kūikawā, ʻaʻole i hoʻopilikia ʻia nā maka i kēia ʻano.
    • ʻAno IV, V, a me VI: He mea kākaʻikahi loa kēia mau ʻano a hiki ke hoʻoulu i nā hopena koʻikoʻi ma nā maka, nā pepeiao, a me ka ʻōnaehana iwi.

    No ke aha lā kēia e hana nei? He aha ke kumu o kēia?

    E like me kaʻu i ʻōlelo ai ma mua, ʻo ke kumu nui o kēia he kīnā genetic. ʻO Collagen ka protein nui i loko o nā ʻiʻo pili o ko mākou kino. Ua like kēia collagen me ka "gum" o ke kino. Aia kekahi mau ʻano genes e kuhikuhi ana i ka hana ʻana o kēia collagen. No ka laʻana, `(COL2A1, COL11A1, COL11A2)`.

    He mutation a kīnā paha ko kekahi o kēia mau genes o ke kanaka me ka Stickler syndrome. ʻO ka hopena, ʻaʻole hiki i ke kino ke hana i ka collagen maikaʻi e pono ai. ʻO kēia ke kumu o nā pilikia a pau i ʻōlelo ʻia ma mua.

    Pehea e loaʻa ai i kahi keiki kēia?

    He mea hanauna kēia ma ke ʻano nui.

    • ʻO ka pinepine: Inā loaʻa i kekahi o nā mākua ka hoʻololi ʻana o ka gene, he 50% ka manawa kūpono o ke keiki e hoʻoilina iā ia. Kāhea mākou i kēia ʻo ke ʻano "autosomal dominant".
    • Kākaʻikahi: ʻOiai inā olakino nā mākua ʻelua, hiki iā lāua ʻelua ke lawe i ka gene mutated me ka ʻole o ka hōʻike ʻana i nā hōʻailona, ​​a hiki i ke keiki ke hoʻoilina i nā mea ʻelua a loaʻa i kēia maʻi (autosomal recessive).
    • Kākaʻikahi loa: I kekahi manawa hiki ke kū mai kēia ʻano ma ke ʻano he hoʻololi ʻana o ka genetics, me ka ʻole o kekahi o ka ʻohana i loaʻa.

    Pehea e ʻike ai i ka maʻi?

    Inā kānalua ʻoe ua loaʻa i kāu keiki kēia mau hōʻailona, ​​​​ke ʻike ʻoe i ke kauka, e holo ʻo ia i kekahi mau hoʻokolohua e hoʻāʻo e hōʻoia i ka maʻi.

    • Hoʻokolokolo kino piha: Nānā pono ke kauka i nā hiʻohiʻona o ke keiki, ka lehelehe luna, nā maka, nā pepeiao, a me nā hono.
    • Mōʻaukala lapaʻau ʻohana: He mea nui ka nīnau ʻana inā ua loaʻa i kekahi o ka ʻohana kēia mau hōʻailona no ka ʻike ʻana.
    • Nānā ʻana i ka ʻike maka a me ka lohe: Hana ʻia nā hoʻokolohua kūikawā e ke kauka maka a me ka loea pepeiao, ihu a me ka ʻāʻī.
    • Nā hoʻāʻo kiʻi:Hoʻohana ʻia nā hoʻokolohua e like me nā X-ray e nānā i kekahi mau kīnā o ke kuamoʻo a i ʻole nā ​​​​​​mea ʻino i nā hono.
    • Ka Hoʻāʻo ʻana i ka Genetic: ʻO kēia wale nō ke ala e hōʻoia pono ai i ka maʻi. Hiki ke lawe ʻia kahi hāpana koko e ʻike ai i ka hoʻololi ʻana o ka genetic e kumu ai.

    Pehea e mālama ʻia ai?

    ʻO ka mea mua, ʻaʻole hiki ke ho'ōla piha ʻia ka maʻi Stickler. No ka mea, he maʻi genetic ia. Akā, mai hopohopo. Aia nā lāʻau lapaʻau kūpono loa e kāohi i nā hōʻailona a me nā pilikia i hoʻokumu ʻia e kēia maʻi. Hoʻolālā ʻia ka lāʻau lapaʻau e like me nā hōʻailona o kēlā me kēia maʻi.

    • ʻOki kino: Pono paha ke ʻoki kino e hoʻoponopono i kahi palate māwae, e hoʻopili hou i kahi retina i hemo (pono e hana koke ʻia kēia), kōkua i nā pilikia hanu, a hoʻoponopono a pani paha i nā hono i hōʻino ʻia.
    • Nā Aniani a me nā Aniani Hoʻoponopono: Pono ka poʻe me nā pilikia o ka ʻike e hoʻohana i nā aniani a i ʻole nā ​​​​aniani hoʻopili.
    • Nā Mea Kōkua Hoʻolohe: He mea kōkua nui kēia no ka poʻe me ka nalowale o ka lohe.
    • Hoʻōla Kino: Paipai ʻia nā hoʻomaʻamaʻa kino e hoʻoikaika i nā ʻiʻo a puni nā hono, hoʻomaikaʻi i ka neʻe ʻana o nā hono, a hoʻemi i ka ʻeha.
    • Nā lāʻau hoʻopau ʻeha: E kuhikuhi ke kauka i ka lāʻau kūpono e kāohi i ka ʻeha o nā hono.
    • Lapaʻau niho a me ka orthodontic: Inā he mau pilikia me ke kūlana o nā niho, pono paha ka lāʻau.

    Hiki ke ola i kahi ola maʻamau me kēia maʻi?

    ʻAe, ʻoiaʻiʻo nō. ʻOiai ʻaʻohe lāʻau lapaʻau no kēia, ʻaʻole kēia maʻi e hoʻopilikia i ke ola o ke kanaka. ʻO ka mea nui loa, ʻo ia ka ʻike mua ʻana i nā hōʻailona, ​​​​​​e mālama pono iā lākou, a e launa mau me kāu kauka. Inā hana ʻia kēlā, hiki i ka hapa nui o ka poʻe ke ola maʻamau, ʻeleu, a me ke ola piha.

    ʻO kahi mea e hoʻomanaʻo ai, ʻo ia ka pale ʻia ʻana o nā haʻuki pili e like me ka rugby, ka pôpeku, a me ka mokomoko. No ka mea, ʻo kahi hahau liʻiliʻi i ke poʻo hiki ke hana i ka retinal detachment, hiki ke alakaʻi i ka nalowale mau loa o ka ʻike.

    I nā kūlana hea e pono ai ʻoe e ʻike i ke kauka?

    Inā loaʻa iā ʻoe a i ʻole kāu keiki kēia maʻi, e makaʻala i nā hōʻailona ma lalo nei. Inā ʻike ʻia kekahi o kēia mau mea, e ʻike koke i kāu kauka.

    • Inā loaʻa iā ʻoe ka ʻeha nui o nā hono .
    • Inā ʻike koke ʻoe i ka ʻike pohihihi, nā ʻālohilohi o ke kukui, nā mea lana, a i ʻole nā ​​aka i kou ʻike, he mau hōʻailona paha kēia o ka hemo ʻana o ka retina. He kūlana kēia e pono ai ke kōkua lapaʻau koke.
    • Inā pilikia ke keiki i ka ʻai ʻana a i ʻole ka inu ʻana.
    • Inā he koko, he wai e like me ka pus e puka mai ana mai kahi i ʻoki ʻia ai, he pehu, a he ʻulaʻula paha (he mau hōʻailona kēia o ka maʻi).
    • Inā pilikia ʻoe i ka hanu ʻana , e hele koke aku i ka Halemai Pilikia (ETU) kokoke loa me ka hoʻokaʻulua ʻole.

    Inā loaʻa kēia maʻi i kekahi o kou ʻohana, a ke hoʻolālā nei ʻoe e loaʻa kahi keiki, he mea nui loa ia e kamaʻilio me kāu kauka e pili ana i ka loaʻa ʻana o ke aʻo ʻana i nā ʻano hoʻoilina.

    Leka Lawe-Home

    • ʻO ka maʻi Stickler kahi maʻi genetic e hoʻopilikia i nā ʻiʻo pili o ke kino a hoʻoili ʻia i lalo i nā hanauna.
    • Hoʻopilikia nui ia i ka ulu ʻana o nā maka, nā pepeiao, nā hono, a me ka maka.
    • ʻAʻohe lāʻau lapaʻau piha no kēia, akā me ka mālama pono ʻana i nā hōʻailona, ​​​​hiki ke ola i kahi ola maʻamau a hana.
    • Inā loaʻa i kāu keiki kēia mau hōʻailona, ​​​​he mea nui loa e ʻike koke i ke kauka kūpono e ʻike pono i ka maʻi.
    • He mea nui e pale loa i nā haʻuki pili, no ka mea, kiʻekiʻe ka pilikia o ka hemo ʻana o ka retinal.

    ʻO ka Stickler Syndrome, ka maʻi genetic, ka maʻi pili o nā ʻiʻo, ka hemahema o ka ʻike, ka nalowale o ka lohe, ka ʻeha hui

    Frequently Asked Questions (FAQ)

    Pehea e loaʻa ai i kahi keiki kēia?

    He mea hanauna kēia ma ke ʻano nui.

    ⚠️ Important: The medical articles and information on Nirogi Lanka are for general awareness only, and are by no means a substitute for professional medical advice, diagnosis, or treatment. For any medical problem you have, consult a qualified physician immediately.

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