He mau kiko a puʻupuʻu paha kou ma kou kino? E kamaʻilio kākou e pili ana i ka Neurofibromatosis (NF)!

Loaʻa iā ʻoe kēlā mau kiko kala kofe ma kou ʻili āu i ʻike ai mai kou wā kamaliʻi? A i ʻole he mau mea liʻiliʻi a puʻupuʻu paha kou e ʻike ʻia ana ma nā wahi o kou kino? ʻAʻole paha he mau kiko a puʻupuʻu wale nō kēia. I kēia lā e kamaʻilio mākou e pili ana i kahi kūlana e like me ia, a he mea paʻakikī iki akā hiki ke hoʻomaopopo ʻia. ʻO ia ʻo Neurofibromatosis , a i ʻole NF no ka pōkole.

He aha ka Neurofibromatosis (NF)?

I ka ʻōlelo maʻalahi, ʻo Neurofibromatosis (NF) kahi hui o nā kūlana e hoʻopilikia i kā mākou ʻōnaehana nerve a me nā genes . Hoʻopilikia ia i ko mākou lolo, ke kaula spinal, nā aʻalolo, a me ka ʻili. Hiki ke ʻokoʻa nā hōʻailona āu e ʻike ai mai kēlā kanaka a kēia kanaka, a ʻokoʻa nō hoʻi lākou ma muli o ke ʻano o NF āu. Akā ʻo nā hōʻailona maʻamau ka hānau ʻana a me nā puʻupuʻu i maʻamau ʻaʻole cancerous (benign). Hiki iā ʻoe ke hoʻoilina i ke kūlana mai kou ʻohana, ʻo ia hoʻi kāu mau genes. Akā, ʻo ka mea kupanaha, ma kahi o 50% o nā hihia, hiki ke hana maʻamau, me ka ʻole o ka mōʻaukala ʻohana.

He aha nā ʻano nui o Neurofibromatosis (NF)?

ʻEkolu ʻano nui o kēia mau NF. E nānā kākou i ke ʻano o lākou.

1. ʻAno Neurofibromatosis 1 (NF1)

ʻO kēia ke ʻano maʻamau o NF. Hana ʻia ia i ka wā:

• Nā kiko cafe au lait: Ua like kēia me nā kiko kala kofe. Hiki ke ʻike ʻia ma nā wahi āpau o ke kino.
• ʻO Neurofibromas: Nā ʻōpū liʻiliʻi e hana ana ma nā aʻalolo.
• Nā freckles ma nā ʻauwae a me ka ʻūhā: Ua like lākou me nā kiko liʻiliʻi.
• ʻO nā ʻōpū aʻalolo optic: Hiki i kēia mau mea ke ulu i loko o nā aʻalolo e pili ana i ka maka.
• Nā kīnā o ka iwi: No ka laʻana, nā mea e like me ka scoliosis.

E noʻonoʻo, aia kekahi kaikamahine liʻiliʻi i kapa ʻia ʻo Nimali. I kona hānau ʻia ʻana, he nui nā kiko waiū e like me ke kofe ma kona kino. I kona wā i ulu iki ai, ua ʻike ʻia nā kiko liʻiliʻi ma kona mau ʻāʻī. I kona hōʻike ʻana iā lākou i ke kauka, ua ʻike ʻo ia he NF1 kāna.

2. ʻO Schwannomatosis e pili ana iā NF2 (i kapa ʻia ma mua ʻo Neurofibromatosis type 2 (NF2))

Hana ʻia kēia ʻano:

• Nā neuromas e ulu lohi ana: Hoʻokumu pū kēia mau mea ma nā aʻalolo.
• Ka hemahema o ka lohe: Hiki ke nalowale ka lohe.
• Nā loli o ka ʻike: Hiki ke hana ʻia nā mea e like me ke cataracts.
• Ka mae a nāwaliwali paha: Manaʻo paha ʻoe ua mae kou mau lālā (peripheral neuropathy).

3. Schwannomatosis (SWN)

ʻO kēia ke ʻano kakaikahi loa . Aia kekahi mau ʻano like ʻole o kēia, ma muli o ka hoʻololi ʻana o ka genetic. I kekahi manawa ʻaʻohe hōʻailona iki. Akā inā ʻike ʻia nā hōʻailona, ​​​​eia kekahi mau mea e hiki ke hana:

• Nā puʻupuʻu aʻalolo e ulu lohi ana (Schwannomas):Hiki ke ʻike ʻia kēia mau mea ma hoʻokahi wale nō ʻāpana o ke kino.
• ʻEha mau loa.
• ʻO ka mae a me ka mumū ma nā manamana lima.

Pehea ka maʻamau o ka Neurofibromatosis (NF)?

Ma ke ʻano laulā, ʻo NF1 ka mea nona ma kahi o 96% o nā hihia NF āpau. ʻO ia hoʻi, ma kahi o hoʻokahi i loko o 3,000 mau pēpē i hānau ʻia i kēlā me kēia makahiki ma ka honua holoʻokoʻa e loaʻa iā ia. ʻO NF2 ka mea nona ma kahi o 3%, ʻo ia hoʻi, ma kahi o hoʻokahi i loko o 33,000 mau pēpē i hānau ʻia. ʻOi aku ka liʻiliʻi o ka Schwannomatosis (SWN), e kū ana ma kahi o 1%.

He aha nā hōʻailona o Neurofibromatosis (NF)?

E like me kā mākou i ʻōlelo ai ma mua, ʻokoʻa nā hōʻailona ma muli o ke ʻano o ka NF. ʻAʻohe hōʻailona o kekahi poʻe, aʻo kekahi poʻe he mau hōʻailona koʻikoʻi paha. Eia nō naʻe, aia ʻelua mau hiʻohiʻona nui i maʻamau i nā ʻano ʻekolu:

• Nā Puʻupuʻu: He mau puʻupuʻu kēia o nā ʻiʻo e hana ʻia i ka wā e hui pū ai nā pūnaewele. Hana ʻia nā ʻano puʻupuʻu NF like ʻole me nā ʻano pūnaewele like ʻole. He lohi pinepine ka ulu ʻana o kēia mau puʻupuʻu a ʻaʻole maʻi kanesa (benign) . Eia naʻe, he mea kakaikahi loa, hiki i kekahi mau puʻupuʻu ke lilo i maʻi kanesa. ʻO kēia mau puʻupuʻu e hana ʻia ma nā aʻalolo ua kapa ʻia ʻo Neurofibromas .

• Nā ulu ʻili: ʻO kēia nā māka hānau, e like me nā wahi café au lait a mākou i kūkākūkā ai ma mua, a me nā ʻiole e ulu ana ma nā ʻauwae a me nā wahi groin. I kekahi manawa, hiki ke ulu nā puʻupuʻu liʻiliʻi, palupalu, e like me ka nui o ka pī (cutaneous neurofibromas) ma ka ʻili.

ʻO ka mea nui loa, ʻaʻole ʻoe e makaʻu i ka loaʻa ʻana o ka NF iā ʻoe no ka mea he mau wahi like me kēia. Eia nō naʻe, inā he kānalua kāu, ʻoi aku ka maikaʻi o ka ʻimi ʻana i ke kōkua lapaʻau.

Ma waho aʻe o kēia mau hōʻailona nui, hiki ke ʻike ʻia nā hōʻailona ʻē aʻe:

• Ka nalowale o ka lohe a i ʻole ka ʻike.
• ʻO ke skoliosis.
• Ka nāwaliwali o nā ʻiʻo.
• ʻO ka mae a me ke ʻāʻī ʻana o nā lālā.
• ʻEha kino a me ka ʻeha poʻo.
• Nā loli o ke ʻano, e like me ka Attention-Deficit/Hyperactivity Disorder (ADHD).
• Nā pilikia aʻo.
• Nā kūlana e like me nā hopu ʻana.

Pehea ke ʻano o kekahi kanaka me Neurofibromatosis (NF)?

ʻOkoʻa maoli kēia mai kēlā kanaka a kēia kanaka. Hiki i kekahi poʻe ke ʻike i nā puʻupuʻu liʻiliʻi a poepoe (ma kahi o hoʻokahi kenimika ke kea, e like me ka nui o ka pī) ma ko lākou ʻili. He mau neurofibromas kēia. Loaʻa paha i kekahi poʻe ma mua o ʻelua o kēia mau puʻupuʻu, a i ʻole he puʻupuʻu nui paha (plexiform neurofibroma) i hana ʻia me kekahi mau aʻalolo ma lalo o ka ʻili.

Ua kamaʻilio mākou e pili ana i nā wahi café au lait. Hiki i kēia mau mea ke ʻokoʻa i ka nui a me ke ʻano mai ka pālahalaha, ʻeleʻele māmā a i ka ʻeleʻele ʻeleʻele. ʻE ʻike pinepine ʻoe i ʻeono a ʻoi aku paha o kēia mau wahi.

He mea maʻamau ka loaʻa ʻana o nā kiko ma ko kākou helehelena. Akā ma NF, ʻike ʻia kēia mau kiko ma nā ʻāʻī a me nā wahi ʻūhā.ʻO kēia nā mea maʻamau. Ua like lākou me nā kiko liʻiliʻi, ʻulaʻula-ʻeleʻele.

I ka makahiki hea e ʻike ʻia ai nā hōʻailona o Neurofibromatosis (NF)?

ʻOkoʻa nō hoʻi kēia mai kēlā kanaka a kēia kanaka. Hiki ke loaʻa kekahi mau hōʻailona i ka wā hānau. Hiki ke ʻike ʻia kekahi i kou wā ʻelemakule, i kou wā ʻōpio, a i ʻole he poʻe mākua. No ka laʻana, hiki ke loaʻa nā neurofibromas ma ka ʻili o kekahi mau pēpē i ka wā hānau. Akā ʻo ka hapa nui o lākou e ʻike ʻia i nā makahiki ʻōpio. He mea maʻamau nā wahi Café au lait i nā makahiki mua o ke ola o kahi keiki. Hiki ke ʻike ʻia nā freckles ma ka ʻūhā a me nā armpits ma waena o nā makahiki 3 a me 5. Hoʻomaka pinepine nā hōʻailona o ka schwannomatosis i ka wā makua, ma kahi o 30 mau makahiki.

He aha ke kumu o ka Neurofibromatosis (NF)?

ʻO ke kumu nui o kēia he loli (mutation) i loko o kā mākou mau genes . E nānā kākou i ke kumu o kēlā me kēia ʻano:

• ʻAno Neurofibromatosis 1 (NF1): Loaʻa iā mākou kahi gene i kapa ʻia ʻo NF1 i loko o ko mākou kino. Hoʻomalu kēia i ka hana ʻana o kahi protein i kapa ʻia ʻo neurofibromin. ʻO ka hana a kēia protein ka hoʻopau ʻana i ka hoʻokumu ʻia ʻana o nā puʻupuʻu.
• NF2-associated schwannomatosis/Neurofibromatosis type 2 (NF2): Hoʻokumu ʻia kēia e kahi gene i kapa ʻia ʻo NF2 (merlin) . Hoʻomalu pū kēia i kahi protein ʻē aʻe i kapa ʻia ʻo neurofibromin. Hoʻopau pū kēia protein i ka hoʻokumu ʻia ʻana o nā tumors.
• ʻO Schwannomatosis: Hiki ke hana ʻia kēia e nā mutations i loko o nā genes SMARCB1 a i ʻole LZTR1 . Eia nō naʻe, i nā hihia he nui, ʻaʻole hiki ke ʻike ʻia ka gene kikoʻī e hoʻokumu ai i kēia maʻi.

I ka ʻōlelo maʻalahi, inā he mutation i loko o kekahi o kēia mau genes ʻehā, ʻaʻole loaʻa i nā protein nā kuhikuhi e pono ai e kāohi i ka ulu ʻana o kā mākou mau cell. ʻO ia ka manawa e hoʻomaka ai nā puʻupuʻu e hana i loko o ke kino.

Hiki iā ʻoe ke hoʻoilina i ka NF1 a i ʻole NF2 mai kou mau mākua, i kapa ʻia he ʻano autosomal dominant . ʻO ia hoʻi, pono ʻoe e kiʻi i kope o ka gene i hoʻololi ʻia mai kekahi o kou mau mākua e loaʻa ai ke ʻano. Eia nō naʻe, ma kahi o ka hapalua o ka poʻe me NF1 e ulu koke iā ia, me ka ʻole o ka mōʻaukala ʻohana. Hiki nō hoʻi kēia ke hana i nā poʻe me NF2. Ma kahi o 85% o ka poʻe me schwannomatosis e ulu koke i ke ʻano, me ka ʻole o ka mōʻaukala ʻohana.

He aha nā kumu pilikia no ka Neurofibromatosis (NF)?

Hiki ke ulu kēia ʻano i loko o kekahi, akā inā loaʻa i kekahi o kou ʻohana kekahi o kēia mau ʻano NF, ʻoi aku ka nui o ka loaʻa ʻana iā ʻoe.

He aha nā pilikia e hiki mai ana o Neurofibromatosis (NF)?

Hiki i ka NF ke hana i kekahi mau pilikia. ʻO kekahi o lākou:

• Ka nalowale o ka lohe.
• Ua emi ka ʻike.
• ʻEha mau.
• Nā pilikia o ke aʻo ʻana a me ke ʻano.
• Nā kūlana cardiovascular - no ka laʻana, ke koko kiʻekiʻe, nā kūlana puʻuwai hānau.
• Nā pilikia hilinaʻi iā ʻoe iho ma muli o nā pilikia ʻili.
• ʻOi aku ka nui o ka pilikia o ka loaʻa ʻana o ka maʻi kanesa ma mua o ka heluna kanaka maʻamau, me ke kanesa o ka umauma a me ka maʻi kanesa palupalu (sarcoma).

He mea nui: ʻAʻole ka hapa nui o nā puʻupuʻu NF he maʻi kanesa. Eia nō naʻe, he mea kakaikahi loa, hiki i kekahi mau puʻupuʻu NF ke lilo i maʻi kanesa. No laila, he mea nui loa ka loaʻa ʻana o nā nānā lapaʻau maʻamau.

Pehea e ʻike ʻia ai ka Neurofibromatosis (NF)?

E nānā ke kauka iā ʻoe a hana i nā hoʻokolohua e pono ai e ʻike i ka NF. E nānā mua lākou i kou ʻili e nānā i nā hōʻailona o nā wahi café au lait a i ʻole neurofibromas. E nānā pū lākou no ka scoliosis, ke koko, ka ʻike, a me ka lohe. E nīnau pū lākou e pili ana i kou olakino a me ka mōʻaukala olakino ʻohana. No laila, inā ʻike ʻoe he NF kekahi o kou ʻohana, e hōʻoia e haʻi i kāu kauka.

He ʻokoʻa nā pae hoʻohālikelike no ka ʻike ʻana i kēlā me kēia ʻano NF. ʻOiai hiki i kahi hoʻokolohua lapaʻau ke hana pinepine i ka ʻike ʻana, hiki i kekahi mau hoʻokolohua ke kōkua i ka hoʻoholo ʻana i ke kumu o kāu mau hōʻailona. Hiki i nā hoʻokolohua kiʻi, e like me ka MRI, X-ray, a i ʻole CT scan, ke hōʻike i ke ʻano o ka hopena o ke kūlana i kāu ʻōnaehana nerve. Hiki i ka hoʻāʻo genetic ke kōkua i ka ʻike ʻana i ka mutation gene e hoʻokumu nei i kāu mau hōʻailona. Eia nō naʻe, ʻaʻole i ʻike nā kauka i nā genes āpau e hoʻokumu ai i ke kūlana.

I kekahi manawa, ʻaʻole ʻike ʻia nā hōʻailona a hiki i nā makahiki ma hope o ko lākou ʻike ʻia ʻana. Ua ʻike ʻia kekahi poʻe he poʻe mākua. ʻO kēia no ka mea e ulu ana nā hōʻailona NF i ka hala ʻana o ka manawa, ma nā pae.

He aha nā lāʻau lapaʻau no ka Neurofibromatosis (NF)?

He mea nui loa kēia: Pono kāu mālama ʻana i ka NF ma lalo o ke alakaʻi ʻana a kahi hui kauka multidisciplinary me ka ʻike loea i nā poʻe maʻi NF . ʻO ka maʻamau, aia i loko o kēia hui:

• Nā kauka neuro-oncology.
• Nā kauka ʻokiʻoki lolo.
• Nā kauka pepeiao, ihu a me ka ʻāʻī (nā kauka ENT).
• Nā kauka ʻokiʻoki.
• Nā mea hoʻōla manaʻo.
• Nā kauka lohe.
• Nā kākā'ōlelo hoʻoilina.

ʻOiai ʻaʻohe lāʻau lapaʻau no NF i kēia manawa, nui nā holomua i ka ʻike ʻana a me ka mālama ʻana i nā puʻupuʻu e pili ana i ka NF. Na kāu kauka e alakaʻi iā ʻoe i ka lāʻau lapaʻau maikaʻi loa no kou kūlana.

Inā ʻaʻohe ou hōʻailona, ​​a i ʻole ʻaʻole e hoʻopilikia kāu mau hōʻailona i kou ola o kēlā me kēia lā, ʻaʻole paha ʻoe e pono i kekahi lāʻau lapaʻau. I kēlā hihia, e noi aku kāu kauka iā ʻoe e hele mai no nā nānā ʻana i hoʻokahi a ʻelua paha i ka makahiki e nānā i ka holomua o ka maʻi.

Hiki i ke kauka ke ʻōlelo i nā lāʻau lapaʻau e like me:

• Ka wehe ʻana i ka puʻupuʻu:Hiki i ke ʻoki kino ke wehe i nā puʻupuʻu ma ka ʻili a ma nā wahi ʻē aʻe o ke kino.
• Nā lāʻau lapaʻau: Ua ʻāpono ʻia ka lāʻau selumetinib e ka US Food and Drug Administration (FDA) e hoʻōki i ka ulu ʻana o nā hunaola puʻupuʻu i nā keiki ma waena o 2 a me 18 mau makahiki me NF1 nona nā puʻupuʻu plexiform neurofibroma i hiki ʻole ke wehe ʻia e ke ʻoki ʻana, a i ʻole nona nā puʻupuʻu i hoʻokumu i ke kīnā a i ʻole ke kīnā.
• ʻO ke ʻoki ʻana e hoʻoponopono i nā ʻano ulu ʻole o ka iwi: Inā loaʻa iā ʻoe ka scoliosis a i ʻole nā ​​​​​​ʻano ulu ʻole o ka iwi ʻē aʻe, hiki i kāu kauka ke ʻōlelo aku i kahi pale a i ʻole, i nā hihia koʻikoʻi, ke ʻoki ʻana.
• Chemotherapy: Hāʻawi ʻia kēia lāʻau no nā puʻupuʻu ʻino. Hoʻopau ka Chemotherapy i nā hunaola kanesa.
• Lapaʻau radiation: Hiki ke hoʻohana ʻia ka lāʻau radiation e kāohi i ka ulu ʻana o ka puʻupuʻu i nā maʻi kanesa e like me ke kanesa o ka umauma, ke kanesa palupalu i kapa ʻia ʻo sarcoma, nā ʻōpū nerve peripheral malignant (MPNST), a i ʻole glioma (kahi puʻupuʻu lolo).

Inā hoʻopilikia ʻia kou lohe a ʻike paha e NF, hiki i kāu kauka ke ʻōlelo i nā mea kōkua e like me nā mea kōkua lohe a i ʻole nā ​​​​​​aniani hoʻoponopono.

Aia kekahi mau hopena ʻaoʻao o ka lāʻau lapaʻau?

Loaʻa i kēlā me kēia lāʻau lapaʻau nā hopena ʻaoʻao. E kūkākūkā kāu kauka i kēia mau mea me ʻoe ma mua o kou hoʻomaka ʻana i ka lāʻau lapaʻau.

Nā hopena ʻaoʻao hiki ke hana ʻia o ke ʻoki kino:

• Ke kahe ʻana o ke koko.
• Ka maʻi ʻana.
• Hoʻi hou mai nā neurofibromas ma hope o ka wehe ʻana.
• Ka pōʻino o ke aʻalolo.

Nā hopena ʻaoʻao o ka chemotherapy:

• Luhi.
• Ka maʻi kahe a i ʻole ka paʻa ʻana o ka ʻōpū.
• Ka nalowale o ka lauoho.
• ʻAʻohe ʻono o ka meaʻai.
• Ka luaʻi a me ka luaʻi.

He aha ke kūlana o ke ola o kekahi kanaka me Neurofibromatosis (NF)?

ʻAʻole pinepine ka hopena koʻikoʻi o ka Neurofibromatosis (NF) i kou manaʻolana ola. Eia nō naʻe, ma muli o ka wahi o nā puʻupuʻu, hiki ke paʻakikī kekahi o kāu mau hana o kēlā me kēia lā, e like me ka lohe a me ka ʻike, ke hana me ke kōkua ʻole. Inā ʻaʻole mālama ʻia, hiki i kekahi mau pilikia, e like me ke kanesa, ke hoʻoweliweli i ke ola.

Hiki ke pale ʻia ka Neurofibromatosis (NF)?

ʻAʻohe ala i ʻike ʻia i kēia manawa e pale aku ai i ka NF. Inā ʻoe e hoʻolālā ana e hoʻomaka i kahi ʻohana, he manaʻo maikaʻi e kamaʻilio me kahi kākāʻōlelo genetic e aʻo hou e pili ana i ka pilikia o ka loaʻa ʻana o kahi keiki me kahi maʻi genetic.

Āhea wau e ʻike ai i ke kauka?

E ʻike i ke kauka inā ʻike ʻoe a i ʻole kāu keiki i kekahi o kēia mau hōʻailona NF ma ko lākou ʻili:

• Loaʻa iā ia he ʻeono a ʻoi aku paha nā wahi cafe au lait.
• ʻIke ʻia nā puʻupuʻu ʻili me ke kumu ʻole.
• Loaʻa nā kiko ma nā armpits a i ʻole ka groin.

Nā hōʻailona ʻē aʻe e pono ai ke ʻike ʻana i ke kauka:

• Nā loli i kou lohe a me/a i ʻole ka ʻike.
• ʻEha me ke kumu ʻole.
• Ka nāwaliwali o nā ʻiʻo.
• ʻO ka maneʻo a i ʻole ke kani ʻana o nā manamana lima a me nā manamana wāwae.

Inā loaʻa iā ʻoe ka NF, e ʻōlelo paha kāu kauka e hele mai ʻoe no nā nānā maʻamau (ʻo ka maʻamau i kēlā me kēia 6 a 12 mau mahina) e nānā i kāu mau hōʻailona. E hōʻoia e hoʻonohonoho i kahi manawa hou inā loaʻa iā ʻoe nā hōʻailona hou a inā e ʻoi aku ka ʻino o kahi hōʻailona e kū nei.

He aha nā nīnau e pono iaʻu e nīnau aku i kaʻu kauka?

• He aha ke kumu o koʻu mau hōʻailona?
• He aha ka pilikia o ka hoʻoilina ʻana o kaʻu mau keiki i ka wā e hiki mai ana i kēia maʻi?
• He aha ke ʻano o ka lāʻau lapaʻau āu e paipai nei?
• Aia kekahi mau hopena ʻaoʻao o ka lāʻau lapaʻau?
• ʻEhia pinepine e pono ai iaʻu ke hele mai no nā hoʻokolohua hahai?
• Aia kekahi mau hoʻokolohua lapaʻau hiki iaʻu ke komo?
• Pono anei au e ʻike i kahi loea hānau keiki?

ʻO ka Neurofibromatosis kahi maʻi e hoʻopilikia i kou ʻōnaehana nerve a me kou ʻili. Hiki iā ia ke hoʻopilikia iā ʻoe ma nā ʻano like ʻole. Loaʻa paha iā ʻoe nā hōʻailona e hoʻopilikia i kāu mau hana o kēlā me kēia lā, a i ʻole ʻaʻohe ou hōʻailona iki. I ka manawa pinepine, ma muli o ke ʻano o ka ulu ʻana o kāu mau hōʻailona i kou wā ʻelemakule, hiki ke hala nā makahiki e loaʻa ai kahi hōʻailona kūhelu. Ke loaʻa iā ʻoe kēia hōʻailona, ​​​​ʻo ka ʻike pono i ka mea e hana nei hiki ke lilo i mea hōʻoluʻolu nui. Hiki i kāu hui lapaʻau ke kōkua iā ʻoe e aʻo hou e pili ana i ke ʻano o kēia maʻi e hiki ai iā ʻoe a me kou ʻohana e hiki mai ana. ʻOiai ʻaʻohe lāʻau lapaʻau, aia nā koho lapaʻau.

ʻO ka mea nui e hoʻomanaʻo (Leka Lawe-Home)

ʻAʻole ia he mea e makaʻu ai ka Neurofibromatosis (NF), akā he mea ia e makaʻala ai.

• Inā he mau kiko ʻē kou, nā puʻupuʻu ma kou ʻili, a i ʻole he nui nā kiko ma kou mau ʻāʻī/ʻūhā, e ʻike i ke kauka .
• Aia nā ʻano NF like ʻole, a ʻokoʻa nā hōʻailona no kēlā me kēia.
• He maʻi hoʻoilina kēia, akā, ʻaʻole ia e holo mau i loko o nā ʻohana.
• ʻOiai ʻaʻohe lāʻau lapaʻau, nui nā lāʻau lapaʻau i loaʻa e kōkua i ka kaohi ʻana i nā hōʻailona a ola i kahi ola maikaʻi aʻe .
• He mea nui loa ka loaʻa ʻana o ka lāʻau lapaʻau ma lalo o ka nānā ʻana a kahi hui lapaʻau kūikawā.
• He mea nui e hana i nā hoʻokolohua lapaʻau maʻamau a e makaʻala i nā hōʻailona hou.

Inā he mau nīnau hou aku kāu e pili ana i kēia, mai kānalua e kamaʻilio me kāu kauka. E hauʻoli lākou e kōkua iā ʻoe.

ʻO Neurofibromatosis, NF, nā puʻupuʻu aʻalolo, nā kiko café-au-lait, nā maʻi genetic, nā kiko ʻili, ka ʻōnaehana aʻalolo