Ua lohe paha ʻoe i ka MELAS Syndrome? ʻAʻole paha. No ka mea, he maʻi laha ʻole ia, ʻo ia hoʻi, ʻaʻole ʻike pinepine ʻia. Akā, he mea nui loa ia e makaʻala iā ia. No ka mea, hiki iā ia ke hoʻopilikia i kā mākou ʻōnaehana nerve, nā ʻiʻo, a me nā ʻāpana koʻikoʻi ʻē aʻe o ke kino. I kēia lā, e kamaʻilio mākou e pili ana i ia mea me nā kikoʻī, maʻalahi loa, ma ke ʻano hiki iā ʻoe ke hoʻomaopopo.
He aha ka MELAS Syndrome? E hoʻomaopopo maʻalahi kākou!
I ka ʻōlelo maʻalahi, ʻo ka MELAS Syndrome kahi maʻi e kū mai ana i ka wā e hana pono ʻole ai nā ʻāpana liʻiliʻi i loko o kā mākou mau cell i kapa ʻia ʻo
mitochondria . E noʻonoʻo e like me kēia mau mea kanu mana liʻiliʻi e hana i ka ikehu no kā mākou mau cell. Ke hana pono ʻole kēia mau mea kanu mana, ʻike ke kino holoʻokoʻa. Hoʻokumu ʻia ka huaʻōlelo MELAS ma ka hoʻohui ʻana i kekahi mau hiʻohiʻona koʻikoʻi o kēia maʻi:
- ʻO ka encephalomyopathy Mitochondrial : Pili kēia i kahi maʻi e hoʻopilikia ana i ka lolo a me nā ʻiʻo e pili ana i ka mitochondria .
- Lactic acidosis: ʻO kēia ka wā e hōʻiliʻili ai kahi kemika i kapa ʻia ʻo lactic acid i loko o ko mākou kino. ʻO ka maʻamau, hana ʻia ka lactic acid ma ke ʻano he huahana ʻaoʻao ke hoʻohana mākou i nā kalapona a mākou e ʻai ai e hana i ka ikehu, akā i kēia maʻi, hōʻiliʻili nui ia.
- Nā hanana e like me ka hahau ʻana : ʻO kēia ka mea maʻamau. Me he mea lā he mau hōʻailona like ko lākou me ka hahau ʻana , akā ʻaʻole ia he hahau maoli. Hiki ke hana pinepine ʻia kēia mau mea.
He maʻi hoʻoilina kēia, ʻo ia hoʻi, he mea ia i hānau ʻia ai mākou. Akā hoʻomaka pinepine nā hōʻailona ma hope iki. Hoʻomaka ka hapa nui o ka poʻe e hōʻike i nā hōʻailona i ko lākou mau makahiki 20 a ma mua paha. Akā no kekahi poʻe, hiki ke ʻike ʻia kēia mau hōʻailona ma mua, e like me ʻelua mau makahiki ma hope, a no kekahi poʻe, ʻoiai ma hope o 40 mau makahiki.
Pehea ka maʻamau o kēia ʻano?
ʻAʻole maʻamau ka maʻi MELAS Syndrome. Ua manaʻo ʻia aia ma kahi o
hoʻokahi i loko o 4,000 mau kānaka e hoʻopilikia ʻia e kēia maʻi. ʻOiai hiki ke hoʻopilikia i kekahi, ʻo ka mea kūikawā,
ua hoʻoilina wale ʻia kēia maʻi mai ka makuahine mai. ʻAʻole ia e hoʻoili ʻia mai ka makuakāne a i ke keiki.
He aha nā hōʻailona o ka MELAS Syndrome?
E like me kā mākou i ʻōlelo ai ma mua, ʻoiai ua loaʻa nā mitochondria i loko o kēlā me kēia cell i loko o ko mākou kino, hiki i ka MELAS Syndrome ke hoʻopilikia i kekahi ʻōkana a i ʻole ʻiʻo. ʻO ka hopena, hiki ke ʻokoʻa loa nā hōʻailona mai kēlā kanaka a kēia kanaka. Eia nō naʻe, no nā kānaka he nui, ʻaʻole i lawa ka koʻikoʻi o nā hōʻailona e hoʻoulu ai i nā hōʻailona neurologic.
Hiki ke ʻike ʻia ka maʻi diabetes mellitus a me ka nalowale o ka lohe. He kuhi liʻiliʻi nō hoʻi kēia e noʻonoʻo ai e pili ana i kēia maʻi. Nā pilikia a me nā hōʻailona e pili ana i ka lolo (neurological)
ʻO ke kumu nui o kēia mau mea he mau hanana e like me ka hahau ʻana. Eia kekahi mau mea e hiki ke hana ʻia:- Aia nā loli koke i ke ʻano .
- Pioloke ka noʻonoʻo, hiki ʻole ke hoʻomaopopo i ka mea e hana nei.
- Ke poniuniu nei a i ʻole ka nalowale ʻana o ke kaulike .
- Hoʻokahi ʻāpana o ke kino, e like me ka lima a i ʻole ka wāwae, lilo i maʻi lolo (paralysis) .
- He manaʻo e like me ka mae a i ʻole ke ʻūlū ma kekahi ʻaoʻao o ke kino.
- Hele mai a hele aku nā ʻeha poʻo , a i kekahi manawa aia paha nā loli i ka ʻike a i ʻole ka ʻōlelo .
- Ke hiki mai nei ke kuʻi ( nā ʻōhū ) .
- Nā huaʻōlelo ʻōlelo ʻole , pilikia ka ʻōlelo ʻana.
- Loaʻa nā pilikia ʻike - ʻike pālua a nalowale loa paha ka ʻike.
- Ke manaʻo nei i ka nāwaliwali ma kekahi ʻaoʻao o ke kino.
Inā ʻike ʻoe i hoʻokahi a ʻoi aku paha o kēia mau hōʻailona i ka manawa hoʻokahi, mai hoʻowahāwahā iā ia. ʻOi aku ka maikaʻi o ka ʻimi koke ʻana i ke kōkua lapaʻau.
Nā hōʻailona e pili ana i nā ʻāpana ʻē aʻe o ke kino
Ma waho aʻe o nā hōʻailona e pili ana i ka lolo, hiki i kēia maʻi ke hoʻopilikia i nā ʻāpana ʻē aʻe o ke kino.- Kino pōkole - ʻOi aku ka pōkole o kekahi poʻe ma mua o ka awelika.
- Nā hanana pinepine o ka luaʻi ʻana .
- ʻEha ʻōpū .
- Ua luhi loa wau, me he mea lā ʻaʻohe oʻu ikaika e hana i kekahi mea.
- ʻO ke ʻehaʻeha o nā ʻiʻo , ʻo ia hoʻi ke ʻano o ka ʻoniʻoni ʻana o nā ʻiʻo.
No ke aha e kū mai ai ka MELAS Syndrome? He aha ke kumu?
ʻO ke kumu nui o kēia, ʻo ia kekahi mau loli i loko o kā mākou mau genes (nā ʻano loli genetic) . ʻIke ʻoe, ʻo nā kuhikuhi e pono ai kā mākou mau cell āpau e hana ai aia i loko o kā mākou DNA . Inā he loli, a i ʻole mutation, i loko o kēia hale kūʻai ʻike i kapa ʻia ʻo DNA, ʻaʻole hiki i nā cell ke hana pono. Hana like ka mea like ma ka MELAS Syndrome. ʻO ka mea nui, inā loaʻa iā ʻoe ka MELAS Syndrome, hoʻoilina ʻoe i kēlā ʻano loli genetic mai kou makuahine.Hana ʻia kēia e kahi loli i loko o ka DNA i loko o ka mitochondria. ʻO wai ka mea i pilikia nui no kēia?
ʻO ke kumu pilikia nui no kēia maʻi, ʻo ia ka mōʻaukala ʻohana . ʻO ke ʻano kēia, inā loaʻa i ka makuahine a i ʻole kekahi hoahānau ma ka ʻaoʻao o ka makuahine kēia maʻi, aia kekahi pilikia e loaʻa pū i nā keiki. He aha nā pilikia e hiki ke loaʻa mai ka MELAS Syndrome?
ʻAʻole ʻo ka MELAS Syndrome kahi mea e hōʻike wale ana i kekahi mau hōʻailona a hoʻōki. Hiki iā ia ke alakaʻi i nā pilikia hou aʻe, ʻo ia hoʻi, nā pilikia olakino hou aʻe.- Hiki iā ia ke alakaʻi i ke kino kīnā a me ka dementia paha.
- ʻO ka maʻi diabetes (Diabetes Mellitus) .
- Nā pilikia lohe , malia paha he nalowale loa o ka lohe.
- Nā pilikia ʻiʻo - nā mea e like me nā ʻūlū ʻiʻo, ka nalowale o ke kaohi ʻana i nā ʻiʻo.
- Nā pilikia o ke hele ʻana a me ke kaulike .
- Ka nalowale ʻana o ka ʻike .
- Nā pilikia o ke akepaʻa .
ʻO nā pilikia e like me kēia e hoʻolilo ai i ka noho ʻana me kēia maʻi i mea paʻakikī. Pehea e ʻike ai nā kauka i kēia?
Inā loaʻa iā ʻoe kēia mau hōʻailona, e nīnau mua ke kauka iā ʻoe e pili ana i kāu mau hōʻailona a inā paha ua loaʻa i kekahi o kou ʻohana kēia mau kūlana (mōʻaukala olakino). A laila e kauoha lākou i nā hoʻokolohua like ʻole. Nā hoʻokolohua hōʻoia:
- Nā hoʻāʻo hoʻoilina: ʻO kēia ka mea e hoʻoholo pono ai inā loaʻa ka ʻokoʻa hoʻoilina.
- Nā hoʻāʻo kiʻi: No ka laʻana , hiki ke hana ʻia kahi scan MRI (Magnetic Resonance Imaging) e nānā i ke kūlana o ka lolo. Hiki i kēia ke nānā no ka hōʻino ʻana o ka lolo i hoʻokumu ʻia e nā kūlana like me ka hahau ʻana.
- ʻO ka wai Cerebrospinal, mimi, a me nā hoʻāʻo koko: Hiki i kēia ke nānā i nā mea e like me nā pae waikawa lactic.
- ʻO ka biopsy ʻiʻo: I kekahi manawa, inā pono, lawe ʻia kahi ʻāpana liʻiliʻi o ka ʻiʻo a nānā ʻia ma lalo o kahi microscope e ʻike inā he mau loli i loko o ka mitochondria.
He aha nā lāʻau lapaʻau no ka MELAS Syndrome?
ʻO ka mea pōʻino, ʻaʻohe lāʻau lapaʻau no ka MELAS Syndrome i kēia manawa. ʻO ke ʻano kēia, ʻaʻohe lāʻau lapaʻau mau loa. Eia nō naʻe, aia nā lāʻau lapaʻau e hiki ke kōkua i ka kaohi ʻana i nā hōʻailona a hoʻomaikaʻi i ke ʻano o ke ola . Hoʻāʻo nā kauka e hōʻemi i ka hopena o kēia mau hōʻailona. Nā lāʻau lapaʻau no nā hōʻailona:
Hiki i kāu kauka ke kuhikuhi i nā lāʻau lapaʻau e like me kēia:- Nā lāʻau lapaʻau antiseizure: Eia nō naʻe, ʻaʻole kūpono ka lāʻau lapaʻau valproate no kēia mau maʻi, no laila e kuhikuhi nā kauka i kahi lāʻau lapaʻau kūpono ʻē aʻe.
- ʻO Coenzyme Q10 a i ʻole L-carnitine: He mau mea like me ka huaora kēia i manaʻoʻiʻo ʻia e hoʻonui i ka hana ikehu i loko o ka mitochondria a hoʻolohi i ka holomua o ka maʻi.
- ʻO L-arginine a me L-citrulline: He mau waikawa amino kēia. Ua hōʻike ʻia e ka noiʻi hiki iā lākou ke kōkua i ka hōʻemi ʻana i ke alapine o nā hanana e like me ka hahau ʻana a hōʻemi i ka pōʻino a lākou e hana ai i ka lolo.
- ʻInulin a i ʻole Metformin: Inā loaʻa iā ʻoe ka maʻi diabetes, hiki ke hāʻawi ʻia kēia mau lāʻau lapaʻau e kāohi iā ia.
- Nā Lāʻau Pale: Pono ka poʻe me ka MELAS Syndrome e loaʻa i kā lākou lāʻau pale kamaliʻi i ka wā hikiwawe loa. He mea nui hoʻi e loaʻa ka lāʻau pale COVID-19, ka lāʻau pale maʻi flū, a me ka lāʻau pale pneumonia i kēlā me kēia makahiki, no ka mea, hiki i nā maʻi ke hoʻonui i ko lākou kūlana.
Nā lāʻau lapaʻau ʻole:
Ma waho aʻe o nā lāʻau lapaʻau, hiki i ke kauka ke kuhikuhi i nā mea e like me:- He hana hoʻoikaika kino e hoʻoikaika i nā ʻiʻo a mālama i ka hana.
- Inā ua nalowale kou lohe, hiki iā ʻoe ke kiʻi i ke kōkua mai nā mea hana e like me nā implants cochlear .
Inā loaʻa iaʻu ka MELAS Syndrome, he aha kaʻu e manaʻo ai?
No ka mea, he maʻi hiki ʻole ke hoʻōla ʻia kēia, pono ʻoe e mālama i ke kūlana no ke koena o kou ola . ʻAʻole ia he mea maʻalahi, akā hiki ke hana ʻia me ka ʻōlelo aʻoaʻo lapaʻau kūpono a me ke kākoʻo. No ka mea, hiki i kēia maʻi ke hoʻopilikia i kekahi ʻōkana a i ʻole nā ʻiʻo i loko o ke kino, pono paha ʻoe i ke kōkua o kahi hui o nā mea lawelawe olakino . Eia kekahi laʻana:- Nā kauka lolo
- Nā kānaka ʻepekema genetics
- Nā kauka puʻuwai
- Nā mea hoʻōla kino - no ka hana ʻiʻo a me nā hono
- Nā mea hoʻōla hana - nā poʻe e kōkua i nā kānaka e hana i nā hana o kēlā me kēia lā me ka maʻalahi
- Nā mea hoʻoponopono ʻōlelo - no nā pilikia ʻōlelo
- Nā limahana kaiaulu - no ke kākoʻo noʻonoʻo a me ka nohona
Eia kekahi, ʻo ke komo ʻana i kahi hui kākoʻo hiki ke lilo i mea kōkua nui iā ʻoe a me kou ʻohana. Ma ia mau hui, hiki iā ʻoe ke kaʻana like i nā ʻike, loaʻa ka ʻike, a loaʻa ka ikaika naʻau mai nā poʻe ʻē aʻe e kū nei i nā kūlana like. ʻEhia ka lōʻihi e hiki ai iā ʻoe ke ola me ka MELAS Syndrome?
He nīnau kēia a ka poʻe he nui e nīnau ai. He mea paʻakikī ke hāʻawi i kahi pane pololei i ka nīnau "Pehea ka lōʻihi e ola ai kekahi me ka MELAS Syndrome?". ʻO kēia no ka mea he ʻokoʻa loa ia mai kēlā kanaka a kēia kanaka. He emi nā hōʻailona o kekahi poʻe, ʻoi aku ka nui o kekahi. ʻOkoʻa nō hoʻi nā pane i ka lāʻau lapaʻau. ʻOiai i loko o ka ʻohana hoʻokahi, hiki ke ʻokoʻa ke ʻano o nā hōʻailona a me ka wikiwiki o ka holomua o ka maʻi. Eia naʻe, pono mākou e hoʻomaopopo i ka ʻoiaʻiʻo. ʻO ka MELAS Syndrome kahi maʻi hiki ke make i kekahi mau hihia. ʻO ia hoʻi, hiki ke hoʻoweliweli i ke ola. ʻO ia ke kumu he mea nui e ʻike pono e pili ana i kēia maʻi a mālama iā ia i ka maikaʻi loa. Hiki ke pale ʻia kēia?
ʻO ka mea pōʻino, ʻaʻohe ala e pale aku ai i ka MELAS Syndrome i kēia manawa no ka mea he maʻi genetic ia. Eia nō naʻe, inā loaʻa i kekahi o ka ʻohana kahi maʻi hoʻoilina e like me kēia, he mea nui loa ia no ka poʻe o kēlā ʻohana e hālāwai me kahi kākāʻōlelo genetic a ʻimi i ka ʻōlelo aʻoaʻo. Hiki iā lākou ke hāʻawi i ka ʻike e pili ana i ka pilikia o ka hoʻoilina ʻana o nā keiki e hiki mai ana i kēia maʻi a me nā hana e hiki ke hana ʻia e pale aku ai. Pehea e mālama ai iaʻu iho ma ke ʻano he kanaka me ka MELAS Syndrome?
Inā loaʻa iā ʻoe ka MELAS Syndrome, he mea nui loa ia e mālama pono iā ʻoe iho.- E hahai pono i nā ʻōlelo a kāu kauka. E hele i ke keʻena lapaʻau i ka manawa kūpono, e lawe pono i ka lāʻau lapaʻau i kuhikuhi ʻia. E haʻi aku paha ke kauka iā ʻoe e ʻike iā ia ma ka liʻiliʻi hoʻokahi manawa i ka makahiki.
- Pono e hana ʻia kekahi mau hoʻokolohua i kēlā me kēia makahiki . Eia kekahi laʻana:
- Maʻi puʻuwai
- Nā pae kō koko
- Hoʻolohe
- Nā maka
- Pono ʻoe e hoʻōki loa i ka inu ʻona a me ka puhipaka, no ka mea hiki i kēia mau mea ke hōʻino hou i ka mitochondria.
- E kiʻi i kāu panakō makahiki no ka maʻi palū, ka panakō pneumonia, a me nā panakō ʻē aʻe i ʻōlelo ʻia e kāu kauka i ka manawa kūpono.
He aha nā nīnau e pono iaʻu e nīnau aku i kaʻu kauka?
He mea maʻamau ke kaumaha ke lohe ʻoe ua loaʻa iā ʻoe a i ʻole kāu keiki kahi maʻi mitochondrial. ʻAʻole paha ʻoe i lohe i ka mitochondria ma mua. ʻO ia ke kumu he mea nui e loaʻa ka ʻike maopopo e pili ana i ka MELAS Syndrome a me ke ʻano o ka loaʻa ʻana o ia mea. E nīnau i kāu hui lapaʻau e pili ana i kēia mau mea āpau. Mai makaʻu e nīnau i nā nīnau. Eia kekahi mau nīnau hiki iā ʻoe ke nīnau:- "He aha nā hōʻailona a i ʻole nā hōʻailona e hōʻike ana i kahi pilikia olakino e hiki mai ana?"
- "Inā hana ʻia kekahi mea e like me ia, pono anei iaʻu e kāhea aku i ke kauka a i ʻole e hele pololei i ka lumi pilikia?"
- "Aia kekahi mau hoʻolālā meaʻai kūikawā e hiki ke kōkua i kēia maʻi?"
- "He aha nā lāʻau lapaʻau a i ʻole nā lāʻau lapaʻau āu e ʻōlelo mai ai noʻu? He aha nā hopena ʻaoʻao e hiki mai ana?"
- "Pono anei koʻu ʻohana e hana i ke aʻoaʻo hoʻoilina?"
- "Ua kūpono anei au e komo i nā hoʻokolohua lapaʻau?"
- "Hiki iā ʻoe ke kuhikuhi i kahi hui kākoʻo e hiki ai iaʻu a me koʻu ʻohana ke hele?"
E nīnau i nā nīnau a pau āu e pono ai a loaʻa nā pane āu e pono ai. E kiʻi i ke kākoʻo e like me kāu e pono ai mai kāu mau kauka, ʻohana, a me nā hoaaloha. ʻO ka manaʻo i kākoʻo ʻia, a me ka loaʻa ʻana o ke kākoʻo, hiki ke hana i kahi ʻokoʻa nui i kēia huakaʻi. Nā mea e pono ai kākou e hoʻomanaʻo mai kēia (Leka Lawe-Home)
ʻAe, e hōʻuluʻulu kākou i kekahi o nā kumu nui a kākou i kūkākūkā ai i kēia lā:- He maʻi laha ʻole ka MELAS Syndrome akā he maʻi koʻikoʻi ia e pili ana i ka hana hewa ʻana o ka mitochondria, nā pūnaewele e hana ana i ka ikehu i loko o ko kākou mau pūnaewele.
- Hoʻopilikia nui ia i ka ʻōnaehana nerve a me nā ʻiʻo. ʻO nā hōʻailona nui, ʻo ia nā maʻi e like me ka hahau ʻana a me ka hōʻiliʻili ʻana o ka waikawa lactic i loko o ke kino.
- Hiki ke hoʻoili ʻia kēia maʻi mai ka makuahine a i ke keiki.
- ʻOiai ʻaʻohe lāʻau lapaʻau piha i kēia manawa, aia nā lāʻau lapaʻau e hoʻokele i nā hōʻailona a hoʻomaikaʻi i ka maikaʻi o ke ola.
- He mea nui loa ke kākoʻo o kahi hui lapaʻau kūikawā, ke kākoʻo ʻohana, a me nā hui kākoʻo i ka wā e noho ana me kēia maʻi.
- Mai kānalua e nīnau i nā nīnau, e ʻimi i ka ʻike, a e kiʻi i ke kōkua āu e pono ai.
Hiki ke weliweli ka MELAS Syndrome ke lohe ʻoe i ka inoa. Eia naʻe, ʻo ka mea nui loa, ʻo ia ka ʻike pono, e hahai i nā ʻōlelo aʻoaʻo lapaʻau, a e kū i kēia kūlana me ka manaʻo maikaʻi. E hoʻomanaʻo mau ʻaʻole ʻoe hoʻokahi. MELAS syndrome, mitochondria, nā maʻi genetic, lactic acidosis, nā hōʻailona like me ka hahau, ʻōnaehana nerve, nā maʻi ʻiʻo
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