Health Library Logo

Health Library

Nā Hōʻailona O Noonan

Nānaina

ʻO ka Noonan syndrome kahi kūlana genetic e hoʻopau ai i ka hoʻomohala maʻamau i nā ʻāpana like ʻole o ke kino. Hiki iā ia ke hoʻopilikia i kahi kanaka ma kekahi mau ʻano, e like me nā hiʻohiʻona helehelena maʻamau ʻole, ke kiʻekiʻe pōkole, nā pilikia naʻau a me nā pilikia kino ʻē aʻe. Hiki nō hoʻi ke hoʻopilikia i kahi keiki e ulu mālie ma mua o ka maʻamau, no ka laʻana, i ka hele ʻana, i ka ʻōlelo ʻana a i ʻole ka aʻo ʻana i nā mea hou.

Hoʻokumu kahi gene i loli i ka Noonan syndrome. Loaʻa i ke keiki kahi kope o kahi gene i hoʻopilikia ʻia mai ka makua. Ke kapa ʻia kēia he dominant inheritance. Hiki nō hoʻi ke kū mai ke kūlana ma ke ʻano he loli kūlohelohe. ʻO ia hoʻi, ʻaʻohe mōʻaukala ʻohana i komo.

Hoʻokele nā kauka i ka Noonan syndrome ma ka kaohi ʻana i nā hōʻailona a me nā pilikia. Hiki iā lākou ke hoʻohana i kahi hormone ulu e mālama i ke kiʻekiʻe pōkole i kekahi poʻe me ka Noonan syndrome.

Nā hōʻailona

Hōʻailona o ka maʻi Noonan he ʻano like ʻole loa a he nui nā ʻano mai ka māmā a hiki i ka nui. Hiki ke pili kēia mau hōʻailona i ka gene kikoʻī e loaʻa ana i ka loli. ʻO ke ʻano o ka maka kekahi hiʻohiʻona nui e alakaʻi ai i ka ʻike ʻana i ka maʻi Noonan. Hiki ke maʻalahi ke ʻike i nā hiʻohiʻona o ka maka i nā pēpē a me nā keiki ʻōpio akā e loli me ka makahiki. E emi iki kēia mau hiʻohiʻona kūikawā i nā mākua. Hiki i ka maʻi Noonan ke komo pū me kēia mau hiʻohiʻona: ākea nā maka, kīloi i lalo a me nā poʻi kaumaha. Hiki ke pālolo uliuli a ʻōmaʻomaʻo paha nā maka. Kū haʻahaʻa nā pepeiao a me he mea lā ua hoʻohuli ʻia i hope. Kaumaha ka ihu ma luna, me ka pālahalaha ākea a me ka piko poepoe. Loaʻa i ka waha kahi ʻauwaha hohonu ma waena o ka ihu a me ka waha a me nā piko ākea ma ka lehelehe luna. E lilo ka ʻili e holo ana mai ka ʻaoʻao o ka ihu a i ke kihi o ka waha i ʻauwaha hohonu me ka makahiki. Hiki ke kikoʻī nā niho. Hiki ke kiʻekiʻe loa ka uhi o loko o ka waha. A hiki ke liʻiliʻi ka ihu lalo. Hiki ke ʻike ʻia nā hiʻohiʻona o ka maka he ʻano ʻiliʻili akā e ʻoi aku ka ʻoi me ka makahiki. Hiki ke ʻike ʻia ka maka he kaumaha a ʻaʻole hōʻike i ka manaʻo. Hiki ke nui ke poʻo me ka lae nui a me ka lauoho haʻahaʻa ma ke kua o ke poʻo. Hiki ke lahilahi a ʻike ʻia ka ʻili me ka makahiki. Ua hānau ʻia ka nui o nā kānaka me ka maʻi Noonan me ka pilikia o ka naʻau e hana ai i kekahi o nā hōʻailona nui o ke kūlana. Ke kapa ʻia nei kēia he maʻi naʻau hānau. Eia kekahi, hiki ke loaʻa kekahi mau pilikia naʻau ma hope i ke ola. ʻO kekahi mau ʻano o ka maʻi naʻau hānau e pili ana i ka maʻi Noonan e komo pū ana: Nā kūlana valve. ʻO ka stenosis valve pulmonary kahi kuʻi ʻana o ka valve pulmonary. ʻO kēia valve ka flap o ka ʻiʻo e hoʻokaʻawale i ke keʻena ʻākau haʻahaʻa o ka naʻau - i kapa ʻia ʻo ka ventricle ʻākau - mai ke aʻa e hoʻolako ana i ke koko i nā māmā - i kapa ʻia ʻo ka aʻa pulmonary. ʻO ka stenosis valve pulmonary ka pilikia naʻau maʻamau loa i ʻike ʻia me ka maʻi Noonan. Hiki ke loaʻa me nā pilikia naʻau ʻē aʻe a ʻaʻole paha. Ka mānoanoa ʻana o ka ʻiʻo naʻau. Hoʻopilikia kekahi mau kānaka me ka maʻi Noonan i ka ulu ʻana a i ʻole ka mānoanoa ʻana o ka ʻiʻo naʻau - i ʻike ʻia hoʻi ʻo ka hypertrophic cardiomyopathy. Nā pilikia naʻau ʻē aʻe. Hiki i nā pilikia me ke ʻano naʻau ke komo pū me ka puka ma ka paia e hoʻokaʻawale i nā keʻena haʻahaʻa ʻelua o ka naʻau, i kapa ʻia ʻo nā ventricles. Ke kapa ʻia nei kēia he ventricular septal defect. ʻO kekahi hemahema i ʻike ʻia i kekahi manawa ka kuʻi ʻana o ke aʻa e lawe ana i ke koko i nā māmā no ka oxygen. Ke kapa ʻia nei kēia he stenosis aʻa pulmonary. A i ʻole hiki ke kuʻi ʻia ke kīʻaha koko nui i kapa ʻia ʻo ka aorta, kahi e lawe ai i ke koko mai ka naʻau a i ke kino. Ke kapa ʻia nei kēia he coarctation aortic. Rhythm naʻau kūpono ʻole. Hiki ke loaʻa kēia me nā pilikia ʻē aʻe i ke ʻano naʻau a ʻaʻole paha. ʻO ka hapa nui o nā kānaka me ka maʻi Noonan he rhythm naʻau ʻaʻole kūpono. Hiki i ka maʻi Noonan ke hoʻopilikia i ka ulu maʻamau. ʻAʻole ulu ka nui o nā keiki me ka maʻi Noonan i ka nui maʻamau. Hiki i nā pilikia ke komo pū me: Ke kaumaha hānau maʻamau akā ulu mālie ma hope. Nā pilikia ʻai e alakaʻi ai i ka ʻai maikaʻi ʻole a me ka loaʻa kaumaha. Nā pae hormone ulu e hiki ke haʻahaʻa loa. Hoʻokaʻulua ʻia i ka ulu wikiwiki i ʻike ʻia maʻamau i nā makahiki ʻōpiopio no ka mea ʻaʻole hiki i nā iwi i ka ikaika a i ʻole ka mānoanoa nui a hiki i ka hope. Ke kiʻekiʻe pōkole ma ke ʻano he mākua, kahi mea maʻamau, akā ʻaʻole pōkole kekahi mau kānaka me ka maʻi Noonan. Hiki i kekahi mau pilikia maʻamau ke komo pū me: Ke kūlana i kapa ʻia ʻo pectus excavatum, kahi e komo ai ka iwi umauma a me nā iwi ʻaoʻao i loko o ka umauma. Hiki nō hoʻi ke loaʻa ka pectus carinatum, kahi e ulu ai ka iwi umauma a me nā iwi ʻaoʻao i waho, e hana ai i ka umauma e kū mai ma mua o ka maʻamau. Nā nipples ākea. ʻAʻī pōkole, pinepine me nā ʻili hou aku, i kapa ʻia ʻo ka ʻāʻī pūnaewele. Kahi kua i loaʻa kahi kikoʻī kūpono ʻole. ʻAʻole hoʻopilikia ka maʻi Noonan i ka naʻauao o ka hapa nui o nā kānaka i loaʻa i ke kūlana. Akā hiki iā lākou ke loaʻa: Kahi pilikia kiʻekiʻe o nā pilikia aʻo a me ka naʻauao haʻahaʻa māmā. Kahi ākea o nā pilikia noʻonoʻo, manaʻo a me ka ʻano, kahi mea māmā maʻamau. Nā pilikia lohe a me ka ʻike e hiki ke paʻakikī i ke aʻo ʻana. ʻO nā hōʻailona maʻamau o ka maʻi Noonan nā maka a me nā poʻi i kūpono ʻole, e komo pū ana: Nā pilikia me nā ʻiʻo maka, e like me ka cross-eye, i ʻike ʻia hoʻi ʻo strabismus. Nā pilikia refractive, ʻo ia hoʻi, he ʻano hua manu ka cornea a i ʻole ka lens me nā kiko ʻelua ʻaʻole kūlike. Hiki i kēia ke hana i ka ʻike maopopo ʻole a i ʻole ka hoʻopōʻino, a i ʻole e paʻakikī ke ʻike i nā mea kokoke a mamao paha. Ka neʻe wikiwiki ʻana o nā eyeballs, i ʻike ʻia hoʻi ʻo nystagmus. Nā cataracts, kahi e hana ai i ka maka mālamalama. Hiki i ka maʻi Noonan ke hana i nā pilikia lohe ma muli o nā pilikia nerve a i ʻole kahi ʻano iwi pepeiao kūloko ʻaʻole maʻamau. Hiki i ka maʻi Noonan ke hana i nā pilikia koko a me ka ʻeha maʻalahi. ʻO ia no ka mea, ʻaʻole hiki ke hoʻopaʻa pono i ke koko o kekahi mau kānaka me ka maʻi Noonan a loaʻa paha nā pae haʻahaʻa o nā protein e pono ai no ka hoʻokumu ʻana i nā clots. No laila, e kahe lōʻihi lākou ma mua o ka maʻamau. Hiki i ka maʻi Noonan ke hana i nā pilikia me ka ʻōnaehana lymphatic, kahi e hoʻokahe ai i ka wai nui mai ke kino a kōkua i ka hakakā ʻana i ka maʻi. Kēia mau pilikia: Hiki ke hōʻike ma mua a ma hope paha o ka hānau ʻana a hoʻomaka paha i nā makahiki ʻōpiopio a i ʻole ma ke ʻano he mākua. Ua hānau ʻia kekahi mau keiki me ka pehu o nā lima, nā wāwae a me ka ʻiʻo o ka ʻāʻī. Hiki ke nānā i kahi wahi kikoʻī o ke kino a i ʻole e laha. ʻO ka mea maʻamau loa ka nui o ka wai e kūkulu ai ma ke kua o nā lima a i ʻole ka luna o nā wāwae. Ke kapa ʻia nei kēia wai kūkulu ʻana ʻo lymphedema. Loaʻa i ka nui o nā kānaka me ka maʻi Noonan nā pilikia me kā lākou mau ʻano a me nā puʻupaʻa: Nā testicles. He mea maʻamau no nā kāne me ka maʻi Noonan ke loaʻa nā testicles undescended. ʻO kēia nā testicles i neʻe ʻole i kahi kūpono i loko o ka ʻeke o ka ʻili e kau ana ma lalo o ka penis, i kapa ʻia ʻo ka scrotum. Puberty. Hiki ke hoʻokaʻulua ʻia ka puberty i nā kāne a me nā wahine. Fertility. No ka hapa nui o nā wahine, ʻaʻole hoʻopilikia ka maʻi Noonan i ko lākou hiki ke hāpai keiki. Akā ʻaʻole paha e ulu ka fertility i nā kāne e like me ka manaʻo, pinepine ma muli o nā testicles undescended. Nā puʻupaʻa. ʻO nā pilikia puʻupaʻa he māmā maʻamau a ʻaʻole maʻamau. Hiki i nā kānaka me ka maʻi Noonan ke loaʻa nā kūlana ʻili. Hiki iā lākou ke loaʻa nā pilikia like ʻole e hoʻopilikia i ke kala a me ke ʻano o ka ʻili. Hiki nō hoʻi iā lākou ke loaʻa ka lauoho ʻiliʻili a liʻiliʻi paha. I kekahi manawa, hiki ke paʻakikī ke ʻike i nā hōʻailona o ka maʻi Noonan. Inā manaʻo ʻoe a i ʻole kāu keiki paha e loaʻa paha kēia kūlana, e ʻike i kāu kauka mālama mua a i ʻole ke kauka pediatrics o kāu keiki. Hiki ke hoʻouna ʻia ʻoe i kahi loea i ka genetics a i ʻole kahi loea i nā pilikia naʻau a i ʻole kekahi ʻano kauka ʻē aʻe, ma muli o nā hōʻailona. Inā pilikia kāu keiki hānau ʻole ma muli o ka mōʻaukala ʻohana o ka maʻi Noonan, hiki ke hana ʻia nā hoʻokolohua ma mua o ka hānau ʻana.

ʻO ka manawa hea e ʻike ai i ke kauka

Ikepā maʻalahi ke ʻike ʻia i kekahi manawa nā hōʻailona o ka maʻi Noonan. Inā manaʻo ʻoe a i ʻole kāu keiki paha e loaʻa paha kēia maʻi, e ʻike i kāu kauka mālama mua a i ʻole ke kauka pediatrics o kāu keiki. Hiki paha ke kuhikuhi ʻia ʻoe i kahi loea genetics a i ʻole kahi loea i nā pilikia naʻau a i ʻole kekahi ʻano kauka ʻē aʻe, ma muli o nā hōʻailona.

Inā pilikia kāu keiki hānau ʻole ma muli o ka mōʻaukala ʻohana o ka maʻi Noonan, hiki ke hana ʻia nā hoʻokolohua ma mua o ka hānau ʻana.

Nā kumu

I loko o kahi maʻi autosomal dominant, ʻo ka gene i hoʻololi ʻia he gene dominant ia. Aia ia ma kekahi o nā chromosomes ʻaʻole pili i ka wahine a me ke kāne, i kapa ʻia ʻo autosomes. Hoʻokahi wale nō gene i hoʻololi ʻia ka mea e pono ai i kekahi kanaka e pilikia i kēia ʻano kūlana. Loaʻa i kahi kanaka me kahi kūlana autosomal dominant—ma kēia laʻana, ka makua kāne—he 50% ka manawa e loaʻa ai iā ia ke keiki i pilikia me hoʻokahi gene i hoʻololi ʻia a me ka 50% ka manawa e loaʻa ai iā ia ke keiki ʻaʻole pilikia.

Hiki i ka hoʻololi ʻana i hoʻokahi a ʻoi aku paha nā gene ke hoʻokumu i ka maʻi Noonan. Hoʻopuka nā hoʻololi ʻana i kēia mau gene i nā protein e hana mau ana. Ma muli o ke kuleana o kēia mau gene i ke ʻano o ka hoʻokumu ʻana o nā pūnaewele i loko o ke kino, hoʻopilikia kēia hana mau ʻana o nā protein i ke kaʻina hana maʻamau o ka ulu ʻana a me ka māhele ʻana o nā cell.

ʻO nā hoʻololi gene e hoʻokumu ai i ka maʻi Noonan hiki ke:

  • Hooilina. Loaʻa i nā keiki i loaʻa i hoʻokahi makua me ka maʻi Noonan e lawe ana i ka gene i hoʻololi ʻia he 50% ka manawa e loaʻa ai iā lākou ke kūlana. Kēia ka mea i kapa ʻia ʻo kahi ʻano hoʻoilina autosomal dominant.
  • Random. Hiki i ka maʻi Noonan ke ulu i loko o ke keiki ma muli o kahi gene hou i hoʻololi ʻia—ʻo ia hoʻi, ʻaʻole i hoʻoilina ke keiki i kēlā gene mai ka makua. Kēia ka mea i ʻike ʻia ʻo kahi kūlana genetic de novo.

I kekahi mau hihia, ʻaʻole ʻike ʻia ke kumu o ka maʻi Noonan.

Nā mea pilikia

He 50% ka manawa o ka makua me ka Noonan syndrome e hoʻoili ai i ka gene i hoʻololi ʻia i ke keiki. Hiki paha i ke keiki e hoʻoilina i ka gene kūpono ʻole ke loaʻa nā hōʻailona nui aʻe ma mua o ka makua i pilikia, a i ʻole paha ʻaʻole.

Nā pilikia

Hiki ke ala mai nā pilikia mai ka maʻi Noonan syndrome e pono ai ka nānā ʻana, me kēia mau mea:

  • Nā hoʻopaneʻe ʻana o ka ulu ʻana. Hiki i nā keiki me ka maʻi Noonan syndrome ke lohi i ka ulu ʻana i hoʻohālikelike ʻia me nā keiki ʻē aʻe o ko lākou mau makahiki. No ka laʻana, hiki iā lākou ke hope loa i ke aʻo ʻana e ʻōlelo a hele a i ʻole ke aʻo ʻana i nā mea ma ke kula. Pono kahi hoʻolālā e hoʻoponopono i nā pilikia ulu ʻana o nā keiki a me nā pono aʻo a me nā hoʻonaʻauao.
  • Ke kahe koko a me ka ʻūlū. I kekahi manawa, ʻaʻole ʻike ʻia ka pilikia kahe koko maʻamau i nā poʻe me ka maʻi Noonan syndrome a hiki i ka wā e hana ai lākou i ka hana niho a i ʻole ka ʻoki kino.
  • Ka hōʻiliʻili ʻana o ka wai. I kapa ʻia ʻo lymphedema, pili kēia pilikia i ka nui loa o ka wai e hōʻiliʻili ana i nā wahi like ʻole o ke kino. I kekahi manawa, hiki i ka wai ke hōʻiliʻili i ka wahi a puni ka naʻau a me nā māmā.
  • Nā pilikia o ke ala mimi. Hiki i kahi ʻano o ka puʻupaʻa ʻaʻole maʻamau ke hoʻonui i ka pilikia o nā maʻi o ke ala mimi.
  • Nā pilikia hānau keiki. Hiki i nā kāne ke loaʻa ka helu sperm haʻahaʻa a me nā pilikia hānau keiki ʻē aʻe ma muli o nā testicles i kau ʻole ʻia a i ʻole nā testicles i hana ʻole pono.
  • Ke kiʻekiʻe o ka pilikia o ka maʻi kanesa. Hiki ke kiʻekiʻe ka pilikia o ka loaʻa ʻana o kekahi mau ʻano o ka maʻi kanesa, e like me ka leukemia a i ʻole kekahi mau ʻano o nā tumors.
Ka pale ʻana

Inā he mōʻaukala ʻohana kāu no ka maʻi Noonan, e kamaʻilio me kāu kauka a i ʻole ka hui mālama ola e pili ana i nā pono o ka ʻōlelo aʻo genetics ma mua o kou loaʻa ʻana o nā keiki. Hiki i ka ho'āʻo genetics ke ʻike i ka maʻi Noonan. Inā ʻike koke ʻia ka maʻi Noonan, he mea hiki paha ke ho'ēmi i nā pilikia e like me ka maʻi naʻau ma o ka mālama kūpono a mau loa.

ʻImi ʻike

Hoʻomaopopo pinepine ka kauka i ka maʻi Noonan ma hope o ka ʻike ʻana i kekahi mau hōʻailona nui. Akā, hiki ke paʻakikī kēia no ka mea ʻaʻole maʻalahi ke ʻike ʻia kekahi mau hiʻohiʻona o ke kūlana a paʻakikī hoʻi ke loaʻa. I kekahi manawa, ʻaʻole ʻike ʻia ka maʻi Noonan a hiki i ka wā makua, ma hope o ka loaʻa ʻana o ke keiki i hoʻopilikia nui ʻia e ke kūlana. Hiki i ka hoʻokolohua gene ke hōʻoia i ka maʻi.

Inā he hōʻike o nā pilikia naʻau, hiki i ke kauka naʻau ke ʻike i ke ʻano a me ka nui o ka pilikia.

Ka mālama ʻana

ʻOiai ʻaʻohe lāʻau lapaʻau no ka maʻi Noonan, hiki i nā lāʻau lapaʻau ke kōkua i ka hoʻemi ʻana i kona mau hopena. ʻO ka mua loa o ka ʻike ʻana a me ka hoʻomaka ʻana o ka lāʻau lapaʻau, ʻo ka nui aku o nā pōmaikaʻi.

Loaʻa ka lāʻau lapaʻau no ka maʻi Noonan ma muli o nā hōʻailona a me nā pilikia a me ko lākou koʻikoʻi. Hoʻomaʻamaʻa ʻia nā mea ola kino a me nā pilikia kino he nui e like me ka hana ʻana no kekahi poʻe ʻē aʻe. Ma muli o nā pilikia he nui me kēia kūlana, ʻo ka hoʻolālā hui hui ka mea maikaʻi loa.

Hiki i nā ala i manaʻo ʻia ke komo:

  • Lāʻau naʻau. Hiki i kekahi mau lāʻau lapaʻau ke mālama i kekahi mau ʻano o nā pilikia naʻau. Inā aia kahi pilikia me nā valve o ka naʻau, pono paha ka ʻoki kino. Hiki i ke kauka ke ʻōlelo aʻo e nānā ʻia ka hana naʻau mai ka manawa mai.
  • Ke mālama ʻana i ka ulu haʻahaʻa. Pono kahi limahana mālama ola e ana i ke kiʻekiʻe ʻekolu manawa i ka makahiki a hiki i ka makahiki 3 a laila hoʻokahi manawa i ka makahiki a hiki i ka wā makua. E hōʻoia kēia i ka ulu ʻana o kāu keiki. No ka ʻike ʻana inā aia kahi pilikia me ka meaʻai, hiki ke kauoha ʻia nā hoʻokolohua koko. Inā ʻaʻole kiʻekiʻe nā pae ulu hormone o kāu keiki, hiki i ka lāʻau lapaʻau ulu hormone ke lilo i koho lāʻau lapaʻau.
  • Ke mālama ʻana i nā pilikia aʻo. No nā hoʻopaneʻe ulu mua o ka wā kamaliʻi, e nīnau i kāu kauka a i ʻole limahana mālama ola e pili ana i nā papahana hoʻoulu kamaliʻi. Pono paha nā lāʻau lapaʻau kino a me ka ʻōlelo. I kekahi mau hihia, hiki ke kūpono ka hoʻonaʻauao kūikawā a i ʻole nā ​​ʻano aʻo i hoʻopilikino ʻia i nā pono o kāu keiki.
  • Nā lāʻau lapaʻau maka a me ka lohe. Manaʻo ʻia nā hoʻokolohua maka ma ka liʻiliʻi i kēlā me kēia ʻelua makahiki. Hiki i nā aniani wale nō ke mālama i ka hapa nui o nā pilikia maka. Pono paha ka ʻoki kino no kekahi mau kūlana, e like me nā cataracts. Manaʻo ʻia nā hoʻokolohua lohe i kēlā me kēia makahiki i ka wā kamaliʻi.
  • Lāʻau lapaʻau no ke kahe koko a me ka ʻūlū. Inā aia kahi moʻolelo o ka ʻūlū maʻalahi a i ʻole nā ​​pilikia kahe koko, mai hoʻohana i ka aspirin a me nā huahana aspirin. I kekahi mau hihia, hiki i nā kauka ke kuhikuhi i nā lāʻau lapaʻau e kōkua i ka hoʻopaʻa koko. E haʻi aku i nā limahana mālama ola e pili ana i nā pilikia me ke kahe koko a me ka ʻūlū ma mua o kekahi mau kaʻina hana.
  • Lāʻau lapaʻau no ka hōʻiliʻili wai. Hiki i ka hōʻiliʻili ʻana o ka wai i ke kino ke pono a ʻaʻole paha i ka lāʻau lapaʻau. E kamaʻilio me kāu kauka a i ʻole hui mālama ola e pili ana i kēia. Hiki iā lākou ke manaʻo aku i kekahi mau ʻanuʻu e lawe.
  • Lāʻau lapaʻau no nā pilikia genital. Inā ʻaʻole i neʻe kekahi a i ʻole nā ​​testicles ʻelua i kahi kūpono i loko o nā mahina mua o ke ola, pono paha kāu keiki i ka ʻoki kino.

Hiki ke pono nā loiloi ʻē aʻe a me ka mālama hoʻomau mau. Loaʻa kēia ma muli o nā pilikia kūikawā. Pono kēlā me kēia kanaka me ka maʻi Noonan e loaʻa ka mālama hoʻomau mai ka manawa mai ma ke ʻano mau.

Loaʻa nā hui kākoʻo no nā kānaka me ka maʻi Noonan a me ko lākou mau ʻohana. E kamaʻilio me kāu hui mālama ola e pili ana i ka loaʻa ʻana o kahi hui kākoʻo ma kou wahi. Eia kekahi, e nīnau e pili ana i nā kumuwaiwai ma ka pūnaewele i hiki iā ʻoe ke hilinaʻi a e alakaʻi iā ʻoe i nā hui kākoʻo kūloko a me ka ʻike e pili ana i ka maʻi Noonan.

Ka mālama ponoʻī

Loaʻa nā hui kākoʻo no nā kānaka me ka maʻi Noonan a me ko lākou mau ʻohana. E kamaʻilio me kāu hui mālama ola e pili ana i ka loaʻa ʻana o kahi hui kākoʻo ma kou wahi. Eia kekahi, e nīnau e pili ana i nā kumuwaiwai ma ka pūnaewele i hiki iā ʻoe ke hilinaʻi a e alakaʻi iā ʻoe i nā hui kākoʻo kūloko a me ka ʻike e pili ana i ka maʻi Noonan.

Ka hoʻomākaukau ʻana no kāu koho

Inā manaʻo ʻoe a i ʻole kāu keiki paha he Noonan syndrome paha kā lākou, ʻo kāu hana mua paha, ʻo ka ʻimi ʻana i ke kauka mālama ola mua a i ʻole ke kauka pediatrics o kāu keiki. Akā ma muli o nā hōʻailona, hiki ke kuhikuhi ʻia kekahi loea - no ka laʻana, he kauka akamai i nā pilikia o ka naʻau a i ʻole nā genetics. Eia kekahi mau ʻike e kōkua iā ʻoe e mākaukau no kāu kūkā. Inā hiki, lawe mai i kahi hoa a i ʻole hoaaloha me ʻoe. Hiki i ka hoa hilinaʻi ke kōkua iā ʻoe e hoʻomanaʻo i ka ʻike a hāʻawi i ke kākoʻo manaʻo. He aha kāu e hiki ke hana Ma mua o ke kūkā, hana i ka papa inoa o: Nā hōʻailona e hopohopo nei ʻoe. ʻO nā lāʻau lapaʻau āpau, me nā huaora, nā mea kanu, nā lāʻau lapaʻau i loaʻa me ka ʻole o ka kuhikuhi a i ʻole nā mea hoʻohui ʻē aʻe, a me nā nui. Nā nīnau e nīnau aku i ke kauka e hoʻohana pono i kāu kūkā. ʻO kekahi mau nīnau e nīnau aku paha: Ke hōʻike nei nā hōʻailona i ka Noonan syndrome? He aha nā hoʻokolohua e hōʻoia i ka maʻi? Aia kekahi mau kumu ʻē aʻe? He aha nā pilikia ʻē aʻe e hiki ke loaʻa ma muli o ka Noonan syndrome? Pehea e hiki ai ke mālama a hoʻokele i kēia mau pilikia? Aia kekahi mau koho i ke ala nui āu e manaʻo nei? Ke kuhikuhi nei ʻoe e ʻike i kahi loea? Aia kekahi mau puke a i ʻole nā mea paʻi ʻē aʻe e hiki iaʻu ke loaʻa? He aha nā pūnaewele āu e kuhikuhi nei? Mai kānalua e nīnau i nā nīnau ʻē aʻe i ka wā o ke kūkā. He aha ka mea e manaʻo ai mai kāu kauka Hiki i kāu kauka ke nīnau i nā nīnau e like me: I ka wā hea ʻoe i ʻike mua ai ua hewa paha kekahi mea? He aha nā hōʻailona āu i ʻike ai? Loaʻa iā ʻoe kekahi mōʻaukala ʻohana o ka Noonan syndrome? Loaʻa iā ʻoe kekahi mau lālā ʻohana i loaʻa i ka maʻi naʻau mai ka hānau ʻana mai a i ʻole nā pilikia koko? E mākaukau e pane i nā nīnau i hiki iā ʻoe ke kamaʻilio e pili ana i ka mea nui loa iā ʻoe. Na nā limahana o ka Mayo Clinic

Address: 506/507, 1st Main Rd, Murugeshpalya, K R Garden, Bengaluru, Karnataka 560075

Hōʻole: He kahua ʻike olakino ʻo ʻAukake a ʻaʻole hōʻike kāna mau pane i ka ʻōlelo aʻoaʻo lapaʻau. E kūkākūkā mau me kahi ʻoihana lapaʻau laikini kokoke iā ʻoe ma mua o ka hana ʻana i nā hoʻololi.

Hana ʻia i India, no ka honua