ʻAlamona

ʻO Albinism kahi kīnā o ka hana melanin. ʻO Melanin kahi mea maoli i ke kino e hāʻawi i ke kala i kou lauoho, ʻili, a me nā iris o ka maka.

Hana ʻia ka albinism ke hiki ʻole i kahi kino ke hana a hāʻawi ʻole i ka melanin.

Hiki ke hoʻoili ʻia kēia mau hemahema i (hoʻoilina) na nā ʻohana.

ʻO ke ʻano albinism koʻikoʻi loa i kapa ʻia he albinism oculocutaneus. ʻO ka poʻe me kēia ʻano albinism he keʻokeʻo a ʻulaʻula paha ka lauoho, ʻili, a me ko Iris kala. He pilikia pilikia ko lākou.

ʻO kekahi ʻano albinism, i kapa ʻia he albinism ʻano 1 (OA1), pili wale i nā maka. ʻO ka ʻili a me ke kala o ka maka o ka mea maʻamau i ka laulā maʻamau. Eia nō naʻe, e hōʻike ana kahi hoʻokolohua maka ʻaʻohe kala i ka hope o ka maka (retina).

ʻO Hermansky-Pudlak Syndrome (HPS) kahi ʻano albinism i hoʻokumu ʻia e ka loli i kahi ʻano hoʻokahi. Hiki iā ia ke hana me kahi maʻi koko, a me nā maʻi pūpū, nā puʻupaʻa, a me nā ʻōpū.

Loaʻa i kekahi kanaka me ka albinism kekahi o kēia mau ʻōuli.

• ʻAʻohe kala o ka lauoho, ʻili, a me ka iris o ka maka
• ʻOi aku ka māmā ma mua o ka ʻili a me ka lauoho maʻamau
• Nā pā o ka waihoʻoluʻu o ka ʻili i nalowale

Pili nā ʻano albinism he nui me nā ʻōuli penei:

• Nā maka i kau ʻia
• ʻIke māmā
• Nā neʻe wikiwiki o ka maka
• Nā pilikia o ka hihiʻo, a i ʻole ka makapō hana

Hāʻawi ka hoʻāʻo genetic i ke ala pololei loa e kuhikuhi ai i ka albinism. He mea kōkua ia ʻano hoʻāʻo inā loaʻa iā ʻoe ka moʻolelo ʻohana o ka albinism. He mea pono nō kekahi o nā hui o ka poʻe i ʻike ʻia e loaʻa i ka maʻi.

Hoʻomaopopo paha kāu mea mālama ola i ke ʻano ma muli o ka helehelena o kou ʻili, lauoho, a me nā maka. ʻO ke kauka maka i kapa ʻia he ophthalmologist paha e hana i kahi electroretinogram. He hōʻike kēia e hiki ke hōʻike i nā pilikia o ka hihiʻo e pili ana i ka albinism. Hiki ke hoʻohana maikaʻi ʻia kahi hoʻokolohua i kapa ʻia he ʻike hiki ke ʻike ʻia inā ʻaʻole maopopo ka ʻike.

ʻO ka pahuhopu o ka mālama ʻana e hōʻoluʻolu i nā ʻōuli.E hilinaʻi ia i ka nui o ka maʻi.

Hoʻopilikia ka mālama ʻana i ka pale ʻana i ka ʻili a me nā maka mai ka lā. E hana i kēia:

• E hōʻemi i ka makaʻā ʻana o ka lā i ka pale ʻana i ka lā, me ka hoʻohana ʻana i ka sunscreen, a me ka uhi ʻana me nā lole ke kū pono i ka lā.
• E hoʻohana i ka sunscreen me kahi pale pale lā kiʻekiʻe (SPF).
• E komo i nā aniani aniani (pale ʻia ʻo UV) e kōkua ai i ka hōʻoluʻolu i ka mālamalama.

Hoʻonohonoho pinepine ʻia nā aniani e hoʻoponopono i nā pilikia o ka ʻike a me ke kūlana o ka maka. Paipai ʻia ke ʻoki kino o ka maka i kekahi manawa e hoʻoponopono i ka neʻe ʻana o ka maka.

Hiki i nā hui aʻe ke hāʻawi i ka ʻike hou aku a me nā kumuwaiwai.

• National Organization for Albinism and Hypopigmentation - www.albinism.org
• NIH / NLM Genetics Home Reference - ghr.nlm.nih.gov/condition/ocular-albinism

ʻAʻole pili ka Albinism i ke ola. Eia nō naʻe, hiki i ka HPS ke hoʻopōkole i ke ola o ke kanaka ma muli o ka maʻi maʻi a i ʻole nā ​​pilikia kahe ʻana o ke kahe.

Hiki ke kaupalena ʻia ka poʻe me ka albinism i kā lākou hana no ka mea ʻaʻole hiki iā lākou ke hoʻomanawanui i ka lā.

Hiki ke hana i kēia mau pilikia:

• Hoemi i ka hihiʻo, makapō
• Maʻi ʻaʻai ʻili

Kāhea i kāu mea hāʻawi inā loaʻa iā ʻoe ka albinism a i ʻole nā ​​hōʻailona e like me ka ʻike māmā e hōʻoluʻolu ai. Kāhea pū inā ʻike ʻoe i nā loli o ka ʻili i hōʻailona mua paha o ka maʻi ʻaʻai ʻili.

Ma muli o ka hoʻoilina o ka albinism, he mea nui ka ʻōlelo aʻoaʻo ʻōiwi. ʻO ka poʻe me ka moʻolelo ʻohana o ka albinism a i ʻole ka waihoʻoluʻu māmā e pono e noʻonoʻo i ka ʻōlelo aʻoaʻo genetika.

ʻAlbinism Oculocutaneous; ʻApala alona

• Melanin

Cheng KP. Ophthalmology. I: Zitelli BJ, McIntire SC, Nowalk AJ, eds. ʻO Zitelli lāua ʻo Davis 'Atlas o ka Pediatric Physical Diagnosis. ʻEpekema 7 Piladelapia, PA: Elsevier; 2018: chap 20.

ʻO Joyce JC. Nā liona hypopigmented. I: Kliegman RM, St. Geme JW, Blum NJ, Shah SS, Tasker RC, Wilson KM, eds. ʻO Puka Textbook of Pediatrics ʻo Nelson. 21st ed. Piladelapia, PA: Elsevier; 2020: chap 672.

Paller AS, Mancini AJ. Nā maʻi o ka pigmentation. I: Paller AS, Mancini AJ, eds. ʻO Hurwitz Clinical Pediatric Dermatology. 5th lā. Piladelapia, PA: Elsevier; 2016: chap 11.