Ke paʻakikī nei hoʻi iā ʻoe ke ʻike i ka pō? Ke emi mālie nei kou ʻike maka? E aʻo kākou e pili ana i ka Retinitis Pigmentosa (RP)!

I kekahi manawa, paʻakikī iā ʻoe ke kalaiwa i ka pō a i ʻole i nā kūlana haʻahaʻa, ʻeā? A i ʻole, ua kuʻi paha ʻoe i kekahi me ka ʻike ʻole ʻana iā lākou e hele mai ana i kou ala? Inā ua ʻike ʻoe i kēia, ʻo ke kumu paha he maʻi maka i kapa ʻia ʻo Retinitis Pigmentosa (RP). Mai hopohopo, ʻaʻole kēia he maʻi maʻamau, akā he mea nui e makaʻala i ia mea. E kamaʻilio kākou e pili ana i ia mea me nā kikoʻī hou aku.

He aha ka 'Retinitis Pigmentosa' (RP)? No ke aha he mea nui loa ia?

I ka ʻōlelo maʻalahi, ʻo 'Retinitis Pigmentosa' (RP) kahi inoa maʻamau no kahi hui o nā maʻi maka i hiki ke hoʻoili ʻia mai kēlā hanauna a i kēia hanauna. Hoʻopilikia nui ia i ka 'retina' i loko o kou maka.

E noʻonoʻo i kou maka e like me ke kāmela kiʻiʻoniʻoni kahiko. Ua hopu ʻia ke kiʻi o kēlā mau kāmela ma ke kiʻiʻoniʻoni. Pēlā nō ia, i loko o kou maka, ma ke kua, aia kahi membrane palupalu loa, ʻike ʻia i ka mālamalama i kapa ʻia ʻo ka retina. Ke hāʻule ka mālamalama mai nā mea a mākou e ʻike ai ma luna o ka retina, hoʻololi ia i kēlā mālamalama i mau hōʻailona uila. A laila hele kēlā mau hōʻailona i ka lolo a ʻike mākou, 'ʻAuē, ʻo ia kēia, ʻo ia kēia.'

No laila, inā ʻaʻole hana pono ka retina, ua like ia me ka haunaele o ke kiʻiʻoniʻoni i loko o ke kāmela. ʻOiai pehea kou ikaika e kālele ai, ʻaʻole e puka maopopo ke kiʻi. Pēlā nō, inā he retina maʻi kou, ʻoiai inā ʻoe e kau i nā aniani a i ʻole nā ​​​​​​aniani hoʻopili, e hoʻopilikia ia i kou ʻike.

Aia i loko o ka retina nā ʻano kūikawā o nā pūnaewele nerve e pane ana i ka mālamalama. Ua kapa ʻia kēia mau mea he mau pūnaewele photoreceptor. ʻElua ʻano o kēia mau mea: nā koʻokoʻo a me nā cone. Kōkua nā koʻokoʻo iā mākou e ʻike i ka mālamalama haʻahaʻa, ʻoi aku hoʻi i ka pō. Kōkua nā cone iā mākou e ʻike maopopo i nā kala a me nā kikoʻī maikaʻi. Me kēia mau pūnaewele, aia kekahi ʻano pūnaewele ʻē aʻe i loko o ka retina i kapa ʻia ʻo nā pūnaewele retinal pigment epithelium. Hana pū kēia mau pūnaewele a pau e hāʻawi iā mākou i ka ʻike maikaʻi.

ʻO Retinitis Pigmentosa (RP) a me nā maʻi retinal hoʻoilina ʻē aʻe (IRD) i hoʻokumu ʻia e nā loli i loko o nā genes e hana pono ai kēia mau cell, i kapa ʻia ʻo genetic mutations . ʻO kēia ke kumu e nāwaliwali mālie ai nā cell a oki i ka hana.

ʻAʻole he maʻi hoʻokahi ka RP. No ka mea, he hui ia o nā maʻi, hiki ke ʻokoʻa ka ʻike mai kēlā kanaka a kēia kanaka. Hoʻomohala ka nui o ka poʻe i ka ʻike haʻahaʻa , a nalowale loa paha kekahi poʻe i ko lākou ʻike. Hoʻomaka pinepine kēia mau loli ʻike i ka wā kamaliʻi. Akā i kekahi manawa lohi loa kēia mau loli a ʻaʻole paha ʻoe e ʻike iā lākou. No kekahi poʻe, hiki koke ka nalowale ʻana o ka ʻike. I kekahi mau ʻano RP, pau ka nalowale ʻana o ka ʻike ma kahi pae.

ʻO ka mea nui loa, ʻo ka Retinitis Pigmentosa e hoʻopilikia pinepine i nā maka ʻelua .

He aha nā hōʻailona o RP? Pehea kona hopena iā ʻoe?

ʻAʻole ʻike koke ʻia nā hōʻailona o ka 'Retinitis Pigmentosa'. Hōʻike mālie lākou. Eia kekahi o nā hōʻailona mua:

• Nā Pilikia ʻIke Pō: E ʻike paha ʻoe he paʻakikī iā ʻoe ke ʻike i nā mea i ka pō, ʻoiai ke emi ke kukui. Hiki ke paʻakikī kēia i ka wā e hele ana ma ke alanui i ka pō a i ʻole i loko o ka hale i ka mālamalama palupalu.
• Nā pilikia e ʻike ana i ka mālamalama palupalu: Hiki ke paʻakikī ke ʻike maopopo i nā mea, ʻaʻole wale i ka pō, akā i nā wahi e like me kahi lumi pouli iki a i ʻole kahi hale kiʻiʻoniʻoni.
• Nā wahi makapō i ka ʻike peripheral: ʻOiai hiki iā ʻoe ke ʻike i kāu mea e nānā nei, ʻaʻole paha ʻoe e ʻike i nā mea a puni ʻoe, e like me ke kaʻa e hele mai ana mai ka ʻaoʻao a i ʻole kekahi e hoʻokokoke mai ana. ʻO ia ke kumu e kuʻi hewa ai kekahi poʻe i nā mea.

I ka hala ʻana o ka manawa, e ʻike ʻia paha nā hōʻailona ʻē aʻe. ʻO kēia mau mea:

• Ka manaʻo o ke kukui ʻālohilohi a ʻālohilohi paha: Loaʻa paha i kekahi poʻe nā kukui ʻālohilohi a i ʻole ka manaʻo o ka pā ʻia ʻana e ka uila.
• ʻIke maka ma ke ana (Me ka ʻike maka waena wale nō): Ua like kēia me ka nānā ʻana i ke ao nei ma o kahi paipu. Hiki iā ʻoe ke ʻike wale i ka mea e kū pololei ana i mua, ʻaʻohe mea a puni ʻoe.
• Photophobia - Ke ʻano ʻeha a ʻoluʻolu ʻole paha i ka mālamalama ʻālohilohi: Lilo nā maka i polū a lilo i mea paʻakikī ke ʻike ʻia ke hōʻike ʻia i ka lā a i ʻole nā ​​kukui ʻālohilohi.
• Ka nalowale ʻana o ka hiki ke ʻike i ke kala: ʻAʻole paha e ʻike ʻia nā kala me ka ʻōlinolino a akaka paha e like me ka wā ma mua.
• Loaʻa ka ʻike haʻahaʻa loa: I nā hihia koʻikoʻi, hiki ke hoʻemi nui ʻia ka ʻike.

Mea nui: Inā loaʻa iā ʻoe kekahi a ʻoi aku paha o kēia mau hōʻailona, ​​​​ʻoi aku ka maikaʻi o ka ʻike ʻana i kahi kauka maka i ka hikiwawe loa.

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No ke aha e ulu ai ka 'Retinitis Pigmentosa'? He aha ke kumu o kēia?

ʻO ke kumu nui o ka Retinitis Pigmentosa (RP) a me nā Maʻi Retinal Hoʻoilina (IRD) ʻo ia kekahi mau loli (genetic mutations) i loko o kā mākou mau genes . ʻO kēia mau genes ka mea e hana i nā cell i loko o kā mākou (retina) a hana iā lākou e hana pono. No laila, i ka wā e loaʻa ai kekahi hewa a loli paha i loko o kēia mau genes, ʻaʻole hiki i kēlā mau cell ke hana pono. I ka hala ʻana o ka manawa, make mālie kēlā mau cell. ʻO ia ka manawa e emi mālie ai ka ʻike.

Ma muli o ka hoʻoilina, hiki i nā keiki ke hoʻoilina i kēia mau loli genetic mai ko lākou mau mākua. Akā, ʻaʻole ia he manaʻo mau e loaʻa iā ʻoe ke kūlana no ka mea ua loaʻa i kekahi o kou ʻohana. Hiki nō hoʻi iā ʻoe ke loaʻa i ke kūlana me ka ʻole o kekahi o kou ʻohana e loaʻa ana. No laila he mea nui ka hoʻāʻo genetic.

Pehea ka laha ʻana o kēia kūlana ma ka honua?

Wahi a nā helu helu ma ʻEulopa a me ʻAmelika, hoʻokahi i loko o 3,500 a 4,000 mau kānaka e loaʻa paha i ka Retinitis Pigmentosa. Ma ka honua holoʻokoʻa, ua manaʻo ʻia he ʻelua miliona mau kānaka e ʻeha nei i kēia maʻi. Aia kekahi poʻe me kēia maʻi ma Sri Lanka. No laila, he mea nui e makaʻala i kēia.

Pehea e ʻike ai nā kauka i ka Retinitis Pigmentosa (RP)?

Inā kānalua ʻoe he RP kou, e hana kāu kauka i kekahi mau hoʻokolohua like ʻole e nānā iā ʻoe. He mea nui loa ka hana ʻana i nā hoʻokolohua maka maʻamau.

Ka hoʻokolokolo ʻana o ka maka me ka hoʻāʻo ʻana i ke kahua ʻike maka

I kēia, hana ka optometrist a i ʻole ophthalmologist i kēia mau mea:

• Ke haʻi aku nei lākou iā ʻoe e heluhelu i ke kākau ma ka paia.
• Ke haʻi aku nei ia iā ʻoe e nānā i kahi mea me nā maka ʻelua.
• Ke ana ʻia nei ke kaomi o kou mau maka.
• Hōʻike kahi hoʻāʻo kahua ʻike i kāu ʻike peripheral.
• Ke nānā nei i ke ʻano o ka pane ʻana o ka haumāna o kou maka i ka mālamalama.
• Hoʻonui ʻia ka maka ma ke kau ʻana i nā kulu maka i loko o ka maka. ʻAe kēia i ka retina e nānā pono ʻia.
• Hiki iā ʻoe ke kiʻi i nā kiʻi o ka retina.

Hoʻāʻo Electroretinography (ERG)

He hoʻāʻo kūikawā kēia. Ana ia i ke ʻano o ka pane ʻana o kou retina i ka mālamalama. Ana ia i ka maikaʻi o ka hana ʻana o nā ʻāpana like ʻole i loko o kou retina (nā koʻokoʻo a me nā cone a mākou i kamaʻilio ai). Pili ia i ka hoʻomālamalama ʻana i nā kukui like ʻole i mua o kou mau maka. He ʻāpana ia o kahi hui o nā hoʻāʻo i kapa ʻia ʻo nā hoʻāʻo electrophysiology ophthalmic. Nānā pū kēia mau hoʻāʻo i ke ʻano o ka hana ʻana o kou mau maka a me kou lolo i kāu mea e ʻike ai.

ʻO ke kiʻikuhi Optical Coherence Tomography (OCT)

He hoʻāʻo ʻaʻole invasive kēia. Hiki i kēia scan OCT ke ana i ka mānoanoa o kou retina a kālailai i ke olakino o kona mau papa. ʻO kāu wale nō e hana ai, ʻo ia ke nānā i kahi pahuhopu, a lawe kahi kāmela kūikawā i nā kiʻi o loko o kou maka.

Hoʻāʻo ʻo 'Fundus Autofluorescence (FAF)'

He "hoʻāʻo kiʻi" ʻaʻole invasive kēia e lawe ana i nā kiʻi o ka maka. Hiki iā ia ke hāʻawi i ka ʻike he nui e pili ana i ke olakino o ka retina. Hoʻohana ʻia ia no ka ʻike ʻana, ka mālama ʻana, a me ka nānā ʻana i ka maʻi.

Me kēia mau hoʻokolohua, hiki i kāu kauka ke ʻōlelo pū i ka hoʻāʻo genetic a me kahi kākāʻōlelo genetic.Hiki iā ʻoe ke kuhikuhi i kahi kipa. No ka mea, inā ʻike ʻoe i ke ʻano o ka hoʻololi ʻana o ka genetic e hoʻoulu ai i ka RP, hiki iā ʻoe ke loaʻa kahi manaʻo pehea e hana ai ka maʻi i ka wā e hiki mai ana a inā paha e pili ana i nā lālā ʻē aʻe o ka ʻohana. He mea nui hoʻi e loaʻa i kekahi mau lāʻau lapaʻau hou, no ka laʻana, ka gene therapy, a i ʻole e komo i nā hoʻokolohua lapaʻau pili.

He aha nā lāʻau lapaʻau no kēia maʻi ʻo 'Retinitis Pigmentosa' (RP)? Pehea e mālama ʻia ai?

ʻO ka ʻoiaʻiʻo, ua nui nā holomua i ka mālama ʻana i ka Retinitis Pigmentosa (RP) a me nā IRD ʻē aʻe i nā makahiki i hala iho nei, ʻoiai me ka hoʻohiki ʻana o nā lāʻau hou e like me ka gene therapy.

Eia kekahi o nā ala e hoʻokele ai i ka RP i kēia manawa:

• Ke hoʻohana ʻana i nā mea kōkua ʻike haʻahaʻa a me nā mea kōkua: Aia nā ʻano mea hoʻonui like ʻole, nā aniani kūikawā, a me nā mea ʻenehana e hiki ke ʻike i ke ʻano a i ʻole ka mea ke kuhikuhi ʻoe iā ia.
• Ka palekana o ka lā: He mea nui e ʻaʻahu i nā aniani maka a hōʻemi i ka ʻike ʻana i ka mālamalama ʻālohilohi, no ka mea, i kekahi manawa hiki i ka mālamalama ʻālohilohi ke hoʻonui i ka RP.
• Ke mālama ʻana i nā kūlana pili ʻē aʻe: Ke mālama ʻana i nā kūlana e like me ka cystoid macular edema (CME) (kahi hōʻiliʻili ʻana o ka wai i waenakonu o ka retina) hiki ke hana me RP.
• Lapaʻau no nā cataracts: Hiki i kekahi poʻe me RP ke loaʻa i nā cataracts. Inā hana ʻia kēia, hiki ke wehe ʻia ma ke ʻoki ʻana.

E aʻo iki kākou e pili ana i ka Gene Therapy.

Ua ʻāpono ka US FDA i kahi huahana hoʻōla gene i kapa ʻia ʻo voretigene neparvovec-ryzl (Luxturna®) e mālama i kahi ʻano RP kikoʻī. Hiki i nā poʻe me nā mutations ma nā kope ʻelua o ka gene RP65 ke pōmaikaʻi mai kēia lāʻau. Eia nō naʻe, loaʻa wale kēia ʻano RP kikoʻī i kahi helu palena o ka poʻe.

Ke hana ʻia nei kekahi mau hoʻokolohua lapaʻau no ka gene therapy no nā ʻano RP a me IRD ʻē aʻe, no laila ke manaʻo ʻia nei nā lāʻau lapaʻau hou aku i ka wā e hiki mai ana.

No nā poʻe me ka RP koʻikoʻi loa, aia nā hihia kahi e noʻonoʻo ai i kahi mea i kapa ʻia he retinal prosthesis .

Aia kekahi ala e pale aku ai i ka ulu ʻana o ka Retinitis Pigmentosa (RP)?

Ma muli o ka hoʻoilina pinepine ʻana o ka Retinitis Pigmentosa, ʻaʻole hiki ke pale ʻia loa.

Eia nō naʻe, aia kekahi mau mea hiki iā ʻoe ke hana e mālama i kou mau maka i ke olakino e like me ka hiki:

• E ʻike pinepine i kahi kauka maka e nānā i kou mau maka. E kōkua kēia iā ʻoe e ʻike i nā pilikia i ka wā mua.
• E komo i nā aniani maka a pale i kou mau maka mai ka mālamalama ʻālohilohi.
• E hahai i kahi nohona olakino. E ʻai pono a hoʻoikaika kino me ka palekana.

He aha kāu e manaʻo ai inā loaʻa iā ʻoe ka RP?

ʻAʻole holomua like ka Retinitis Pigmentosa ma ke ʻano like a i ʻole ma ka wikiwiki like no kēlā me kēia kanaka. ʻO kēia no ka mea he nui nā ʻano genes like ʻole e hoʻokumu ai. Ma muli o ke ʻano gene, ʻokoʻa ke ʻano o ka maʻi e pili ana i kēlā me kēia kanaka. ʻO ia ke kumu he mea nui e loaʻa ka hoʻāʻo genetic a me ke aʻoaʻo genetic.

E nīnau i kāu kauka e pili ana i nā hoʻokolohua lapaʻau o kēia manawa, nā hui kākoʻo, a me nā mea kōkua ʻike maka.

Āhea wau e ʻike ai i ke kauka?

Ma ke ʻano he kānāwai maʻamau, e ʻike pinepine i kāu kauka maka ma kahi papa hana maʻamau. Eia kekahi, inā loaʻa iā ʻoe nā hōʻailona hou, a inā e ʻoi aku ka ʻino o kāu mau hōʻailona, ​​e ʻike koke i kāu kauka. Eia kekahi laʻana:

• Inā manaʻo ʻoe e ʻoi aku ka ʻino o kou ʻike moakāka a ʻike kala paha).
• Inā loaʻa iā ʻoe ka ʻeha hou a i ʻole ka ʻoluʻolu ʻole i kou mau maka.

E hoʻomanaʻo: Nui nā ʻano o Retinitis Pigmentosa, ʻaʻole nā ​​ʻano āpau e lilo ai ka ʻike i mea nalowale loa. ʻO ke ala maikaʻi loa e pale ai a loaʻa ka pōmaikaʻi mai kou ʻike e like me ka hiki, ʻo ia ka hoʻokolokolo maka mau a hahai i nā ʻōlelo a kāu kauka.

I ka hōʻuluʻulu manaʻo, e hoʻomanaʻo i kēia! (Leka Lawe-Home)

He maʻi koʻikoʻi ka Retinitis Pigmentosa (RP) e pono e lawe koʻikoʻi ʻia. Eia nō naʻe, inā ʻike ʻoe iā ia a hana i nā hana e pono ai, hiki iā ʻoe ke kōkua iā ʻoe iho e ola i kahi ola maʻamau.

• Mai makaʻu, e hoʻomaopopo: Inā ua ʻike ʻia ʻoe me RP, e hoʻomaopopo pono e pili ana i ia mea. E nīnau i kāu kauka.
• Nā hoʻokolohua maka maʻamau: E nānā i kou mau maka i nā manawa maʻamau e like me ka ʻōlelo a kāu kauka maka.
• Ka hoʻāʻo ʻana a me ke aʻo ʻana i ka genetic: He mea nui loa kēia mau mea e hoʻomaopopo ai i kou kūlana kikoʻī.
• E kiʻi i ke kākoʻo: E kamaʻilio me ka ʻohana a me nā hoaaloha e pili ana i kēia. E hui pū me nā hui kākoʻo inā pono. ʻAʻole ʻoe hoʻokahi.
• E makaʻala i nā lāʻau lapaʻau hou: Ke holomua nei ka ʻepekema lapaʻau. E nīnau i kāu kauka e pili ana i nā lāʻau lapaʻau hou a me nā hoʻokolohua lapaʻau.

Nui nā mea hiki iā ʻoe ke hana e pale i kou mau maka. ʻO ka mea nui loa , ʻo ia ka hana ʻana i ka mea kūpono me ka haʻalele ʻole i ka manaʻolana.

ʻO Retinitis Pigmentosa, RP, nā maʻi maka, ka nalowale o ka ʻike, ka makapō pō, nā maʻi hoʻoilina, retina, ʻike maka