Ua hoʻomaka koke anei ʻoe e manaʻo i ka nāwaliwali a i ʻole ke kani ʻana o kou mau wāwae? Ke nalowale pinepine nei ʻoe i kou kaulike a hāʻule i kou hele ʻana? Hiki paha iā ʻoe ke ʻike i kekahi mau loli i ke ʻano o kou mau wāwae. Mai hoʻokuʻu i kēia mau mea me he luhi maʻamau lā. No ka mea, he mau hōʻailona paha kēia o kahi kūlana neurological kikoʻī i kapa ʻia ʻo Charcot-Marie-Tooth (CMT). ʻOiai he paʻakikī iki ka inoa, ʻaʻohe mea e makaʻu ai. I kēia lā, e kamaʻilio kākou e pili ana i kēia maʻi, kona mau hōʻailona, a me nā mea hiki ke hana ʻia e pili ana iā ia ma ke ʻano maʻalahi a aloha hoʻi.
He aha ka maʻi Charcot-Marie-Tooth (CMT)?
I ka ʻōlelo maʻalahi, ʻo CMT kahi maʻi e hoʻopilikia ai i nā aʻalolo ma waho o ko mākou lolo a me ke kaula spinal . Kāhea mākou i kēia mau aʻalolo he mau aʻalolo peripheral. Lawe kēia mau aʻalolo i nā leka mai ko mākou lolo i ko mākou mau lālā a lawe mai i nā manaʻo (wela, anu, ʻeha) mai ko mākou mau lālā i ka lolo. Ma CMT, ua hōʻino ʻia kēia mau aʻalolo.
Ua loaʻa kēia inoa ʻē mai nā inoa o nā kauka ʻekolu i ʻike mua i ka maʻi i ka makahiki 1886 (ʻo Jean-Martin Charcot, ʻo Pierre Marie, a me Howard Henry Tooth). Ua kapa ʻia hoʻi ʻo ia ʻo `(hereditary motor and sensory neuropathy)` a me `(peroneal muscular atrophy)`. ʻAʻole kēia he maʻi hoʻokahi, akā he hui o nā maʻi i hoʻokumu ʻia e nā kumu genetic. A hiki i kēia manawa, ua ʻike ʻia ma mua o 90 mau ʻano o CMT.
ʻO ka mea nui loa, ʻaʻole kēia he maʻi lele. ʻO ia hoʻi, ʻaʻole hiki ke laha mai kekahi kanaka a i kekahi kanaka ma o ka ʻū ʻana a i ʻole ka hoʻopā ʻana.
He aha ke kumu o ka maʻi CMT?
Hoʻokumu ʻia kēia maʻi e kahi hoʻololi genetic i loko o kā mākou mau genes . He mea kēia i hoʻoili ʻia mai ka makua a i ke keiki. E noʻonoʻo i kā mākou ʻōnaehana nerve e like me kahi pūnaewele o nā uea kelepona. ʻO ka lolo ke kikowaena nui. Mai laila mai, hoʻouna ia i nā leka i nā ʻiʻo i loko o ko mākou mau lima a me nā wāwae e "hoʻolōʻihi" a "hoʻolōʻihi." ʻO ka mea e hana ʻia ma CMT, ʻaʻole hana pono kēia mau uea kelepona, a i ʻole nā aʻalolo.
ʻO kēia kīnā hoʻoilina e pale aku i nā aʻalolo mai ka hoʻouna ʻana i nā leka me ka pololei a me ka wikiwiki. I ka hala ʻana o ka manawa, nāwaliwali mālie kēia mau aʻalolo, hōʻino ʻia, a hiki ke nalo. ʻO ia ka manawa e ʻike ʻia ai nā hōʻailona e like me ka nāwaliwali o nā ʻiʻo a me ka nalowale o ka ʻike.
He aha nā hōʻailona maʻamau o kēia maʻi?
Hoʻomaka pinepine nā hōʻailona o CMT i ka wā kamaliʻi a i ʻole ka wā ʻōpio . ʻIke mua ʻia kēia mau hōʻailona ma nā wāwae a me nā wāwae.
| Hōʻailona | He wehewehe maʻalahi |
|---|---|
| Hoʻololi i ke ʻano o ka wāwae | Ua piʻo nui ʻia ke poʻo o ka wāwae. Eia kekahi, ua kūlou nā manamana wāwae i waenakonu, e hana ana i ke ʻano hāmare. Kāhea mākou i kēia he "hammertoes". ʻO kēia ka mea e paʻakikī ai ka hele ʻana, a hiki ke hana i nā ʻeha, nā pehu, a me nā calluses i ke komo ʻana i nā kāmaʻa. |
| Paʻakikī ka hele wāwae | Lilo i mea paʻakikī ke hāpai i ka wāwae mai ka honua i ka wā e hele ana. Ua kapa ʻia kēia he "foot drop." ʻO kēia ke kumu o ka huki ʻana o ka wāwae ma ka honua, a i ʻole pono ʻoe e hele me kahi hele "slapping". |
| Nāwaliwali o nā ʻiʻo | I ka hala ʻana o ka manawa, e lahilahi a nāwaliwali nā ʻiʻo, ʻoi aku hoʻi ma nā wāwae haʻahaʻa. |
| Ka nalowale o ka ʻike a me nā pilikia kaulike | Hiki ke ʻāʻī a ʻūlū paha nā wāwae a me nā lima. Lilo ia i mea paʻakikī ke mālama i ke kaulike i loko o ke kino. |
I ka holomua ʻana o ka maʻi, hiki i kēia mau hōʻailona ke hoʻopilikia i nā ʻiʻo o nā lima a me nā lima. Eia nō naʻe, hiki i ka poʻe me kēia maʻi ke ola lōʻihi a piha .
Pehea e ʻike pololei ai ke kauka i kēia maʻi?
Inā loaʻa iā ʻoe a i ʻole kāu keiki kēia mau hōʻailona, ʻo ka mea maikaʻi loa e hana ai, ʻo ia ke ʻike i ke kauka . Hiki i kāu kauka ke kuhikuhi iā ʻoe i kahi neurologist, he kauka loea i ka ʻōnaehana nerve.
Hana lākou i kekahi mau hoʻokolohua e ʻike ai i ka maʻi, e like me:
- Mōʻaukala lapaʻau ʻohana : E nīnau inā ua loaʻa i kekahi o kou ʻohana kēia mau hōʻailona.
- Hoʻokolokolo kino:Hana lākou i nā hoʻokolohua e like me ka reflex knee-jerk, ʻo ia hoʻi ke kuʻi ʻana i ke kuli me ka hāmare liʻiliʻi. He nāwaliwali loa kēia mau reflexes i ka poʻe me CMT. Hoʻāʻo pū lākou no ka nāwaliwali o nā ʻiʻo ma ke noi ʻana iā lākou e hele ma luna o ko lākou mau kapuaʻi.
- Hoʻāʻo wikiwiki o ke alakaʻi ʻana o nā aʻalolo: Pili kēia i ka hoʻopili ʻana i nā electrodes liʻiliʻi i ka ʻili a me ka hoʻouna ʻana i kahi au uila liʻiliʻi loa e ana i ka wikiwiki o ke alakaʻi ʻana o nā aʻalolo i nā leka. Lohi kēia wikiwiki i nā poʻe maʻi CMT.
- Electromyography (EMG): Hoʻokomo ʻia kahi nila lahilahi loa i loko o kahi ʻiʻo a ana ʻia ka hana uila o ka ʻiʻo ʻoiai ʻoe e hana ana i kahi hana, e like me ke kuʻi ʻana i kou lima.
- Hoʻāʻo DNA: Lawe ʻia kahi hāpana koko e nānā i nā kīnā genetic e hoʻoulu ai i ka CMT. Eia nō naʻe, ʻo ka loaʻa ʻole o kahi kīnā i kēia hoʻāʻo ʻaʻole ia he manaʻo ʻaʻole i loaʻa ʻo CMT, no ka mea, ʻaʻole i ʻike ʻia nā genes āpau e hoʻoulu ai i ka maʻi.
He aha nā lāʻau lapaʻau no CMT?
ʻO ka mea pōʻino, ʻaʻohe lāʻau lapaʻau no CMT i kēia manawa . Eia nō naʻe, he nui nā lāʻau lapaʻau e hiki ke kōkua i ka kaohi ʻana i nā hōʻailona a alakaʻi i kahi ola maikaʻi.
ʻO ka mea nui loa, ʻo ia ka mālama ʻana i ka maʻi. Nui nā ʻano like ʻole e hana ai i kēia.
- Hoʻōla Kino: He mea nui loa kēia. Hana ʻia nā hoʻoikaika kino a me nā hoʻoikaika ʻana ma lalo o ke alakaʻi a ke kauka lapaʻau. He maikaʻi loa nā hoʻomaʻamaʻa ʻaʻole e kau i ke kaumaha ma luna o nā hono, e like me ka ʻauʻau a me ke kaʻa paikikala. He mea nui loa ka hoʻomaka ʻana i kēia lāʻau lapaʻau i nā pae mua , ma mua o ka nāwaliwali ʻana o nā ʻiʻo.
- Lapaʻau Hana: Kōkua kēia lāʻau lapaʻau i ka wā e hoʻopilikia ai ka maʻi i nā lima a hoʻolilo iā ia i mea paʻakikī ke hana i nā hana o kēlā me kēia lā (ʻai ʻana, ʻaʻahu ʻana). Pili ia i ke aʻo ʻana i nā mākau e hoʻoikaika i ka paʻa ʻana a hoʻomaʻalahi i nā mea.
- Nā Mea Kōkua: Hiki i nā pale wāwae a me nā kāmaʻa maʻamau ke maʻalahi i ka hele wāwae a hāʻawi i ke kākoʻo maikaʻi aʻe no ke kino.
- Lāʻau lapaʻau: Loaʻa nā lāʻau ʻeha a me nā lāʻau lapaʻau ʻē aʻe no nā mea e like me ka ʻeha ʻiʻo a me ka ʻeha aʻalolo. Pono ʻoe e kamaʻilio me kāu kauka e pili ana i kēia a koho i ka mea kūpono.
- ʻOki kino: I kekahi mau hihia, hiki ke ʻōlelo ʻia ke ʻoki kino e hoʻoponopono i nā kīnā koʻikoʻi a me nā pilikia hono i nā wāwae. Eia nō naʻe, ʻaʻole hiki i ke ʻoki kino ke hoʻoponopono i ka pōʻino o ke aʻalolo.
Hiki i kēia maʻi ke hoʻoulu i nā pilikia ʻē aʻe?
ʻAe, hiki i ka CMT ke hana i kekahi manawa i nā pilikia olakino ʻē aʻe.
- Paʻakikī ka hanu ʻana a me ke ale ʻana: He mea kākaʻikahi kēia. Akā inā pilikia nā ʻiʻo e kaohi ana i ka diaphragm, hiki iā ʻoe ke paʻakikī i ka hanu mau. Inā hana ʻia kēia, e ʻike koke i ke kauka. Hiki ke lilo i pilikia.
- Nā maʻi: No ka mea, ʻaʻole ʻike nui ʻia nā wāwae, i kekahi manawa ʻaʻole ʻike ʻia nā ʻōpala liʻiliʻi a me nā ʻeha. Inā ʻaʻole mālama pono ʻia kēia mau ʻeha, hiki iā lākou ke lilo i maʻi. No laila, he mea nui loa ia e nānā mau i kou mau wāwae a mālama iā lākou i ka maʻemaʻe .
- Hip Dysplasia: Inā ʻaʻole i hoʻonohonoho pono ʻia ka hui ʻūhā, hiki i ka CMT ke hoʻonui i ke kūlana.
- Nā pilikia i ka wā hāpai: ʻOi aku ka nui o ka pilikia o nā wahine me CMT i ka hoʻomohala ʻana i kekahi mau pilikia i ka wā hāpai.
Leka Lawe-Home
- He maʻi neurological genetic ʻo Charcot-Marie-Tooth (CMT) i hoʻoilina ʻia mai nā mākua. ʻAʻole ia he mea laha.
- ʻO nā hōʻailona nui ka nāwaliwali mālie o nā ʻiʻo, ʻo ia hoʻi ma nā wāwae a me nā kapuwaʻi, ka paʻakikī i ka hele wāwae, a me ka nalowale o ka ʻike.
- ʻOiai ʻaʻole hiki ke ho'ōla piha ʻia, me ka hoʻoikaika kino, nā mea kōkua, a me ka hoʻokele kūpono, hiki ke ola i kahi ola maikaʻi loa a piha.
- Inā loaʻa iā ʻoe kēia mau hōʻailona, mai makaʻu a hoʻokaʻulua paha, e ʻike i ke kauka a loaʻa i kahi hōʻailona kūpono.
- He mea nui loa ka mālama ʻana i kou mau wāwae, e hoʻomaʻemaʻe pinepine iā lākou a nānā i nā ʻeha.
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