Ke ʻeha nei ʻoe? Ke mae nei kou mau lālā? He Inclusion Body Myositis (IBM) paha kēia!

Ke manaʻo nei ʻoe i kekahi manawa he paʻakikī iā ʻoe ke paʻa i nā mea, ke pihi ʻana i kahi pihi, a i ʻole ka hele wāwae ʻana? Ke noʻonoʻo nei paha ʻoe, "ʻĀ, he mea kēia e hana ʻia ke ʻelemakule ʻoe." Akā i kekahi manawa, ʻaʻole maʻalahi kēia mau mea. I kēia lā, e kamaʻilio mākou e pili ana i kahi maʻi kakaʻikahi akā koʻikoʻi loa e makaʻala. ʻO ia ka mea i kapa ʻia ʻo 'Inclusion Body Myositis', i ʻike ʻia hoʻi ʻo '(IBM)' no ka pōkole.

He aha ka 'Inclusion Body Myositis (IBM)'? E hoʻomaopopo maʻalahi kākou!

I ka ʻōlelo maʻalahi, ʻo ka 'Inclusion Body Myositis' kahi maʻi e hoʻonāwaliwali mālie ai i kou mau ʻiʻo, akā ʻaʻole ia e hōʻeha nui. Hoʻomaka pinepine ia ma hope o 50 mau makahiki. E noʻonoʻo e pili ana i ia mea, paʻakikī paha iā ʻoe ke 'ʻūmi' i kahi mea liʻiliʻi, paʻakikī paha i ka 'hopu' i kahi mea, a i ʻole e hele wāwae a hāʻule paha i kou hele wale ʻana. ʻO kēia nā hōʻailona mua āu e ʻike ai.

ʻO kēia maʻi, i kapa ʻia ʻo 'IBM', e ulu mālie ana i nā makahiki he nui. ʻAʻole ia he maʻi e hoʻoweliweli i ke ola. ʻO ke ʻano kēia, ʻaʻole ia e pepehi iā ʻoe. Eia naʻe, i ka hala ʻana o ka manawa, hiki iā ia ke paʻakikī i ka hana ʻana i nā hana o kēlā me kēia lā, hiki ke alakaʻi i kekahi ʻano o ke kīnā. I kekahi manawa, hoʻokahi wale nō ʻaoʻao o kou kino i hoʻopilikia nui ʻia. Ma kahi o ka hapalua o ka poʻe me kēia maʻi e loaʻa paha nā pilikia i ka ale ʻana.

ʻO ka mea kaumaha, ʻaʻohe lāʻau lapaʻau no IBM i kēia manawa. Akā, mai hopohopo! Hiki i ka hoʻōla kino ke kōkua iā ʻoe e mālama i kou ikaika ʻiʻo no ka lōʻihi loa.

Pehea ka maʻamau o kēia kūlana 'IBM'?

ʻO ka Inclusion Body Myositis kahi maʻi e pili ana i kahi hui o nā maʻi hoʻonāwaliwali i nā ʻiʻo i kapa ʻia ʻo myopathies. ʻO nā myopathies nā maʻi e hoʻouka a hoʻonāwaliwali i kou mau olonā ʻiʻo. Hōʻike ka noiʻi e hoʻopilikia ʻo IBM ma waena o 5 a me 9 o kēlā me kēia miliona mau mākua. He ʻekolu manawa hoʻi ka nui o ka maʻamau i nā kāne ma mua o nā wahine (3:1).

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He aha nā hōʻailona o ka 'Inclusion Body Myositis (IBM)'? E ʻike pono kākou!

ʻO ka nāwaliwali o nā ʻiʻo i hoʻokumu ʻia e IBM e hele mai me ka lohi loa. Hoʻomaka pinepine ia ma nā lālā. Hiki iā ʻoe ke ʻike mua i ka nāwaliwali ma kou mau wāwae, ʻūhā, a i ʻole nā ​​​​lima, nā pulima lima, a i ʻole nā ​​​​manamana lima. E noʻonoʻo e pili ana i kēia ʻano: pilikia kekahi poʻe i ke pihi ʻana i kahi pālule, a ʻaʻole kākau maʻalahi kā lākou mau peni. Paʻakikī kekahi i ka piʻi ʻana i nā alapiʻi, a i ʻole e hina a hāʻule lākou i ka wā e hele wale ana.

I ka wā e ʻoi aʻe ai ka ʻino o nā hōʻailona, ​​​​e ʻike paha ʻoe i nā mea e like me:

• ʻO nā ʻiʻo ma nā lima, nā wāwae, nā poʻohiwi, ka ʻūhā, nā poho lima, a me nā manamana lima e lilo mālie i mea nāwaliwali. E noʻonoʻo, ʻaʻole hiki iā ʻoe ke hāpai i nā mea āu i hiki ai ke hāpai maʻalahi, a he pilikia kou e ala aʻe mai kahi noho.
• Ka hoʻonāwaliwali ʻana o nā ʻiʻo ma ka ʻāʻī a i ʻole ka esophagus. Hiki i kēia ke paʻakikī i ka paʻa ʻana o ke poʻo i luna, e paʻakikī ai ke ale i ka meaʻai, a hiki ke hoʻopaʻa i ka meaʻai.
• Ua ʻike maopopo ʻia ka palupalu o nā ʻiʻo. ʻO ke ʻano kēia ua emi nā ʻiʻo a ua lahilahi loa.
• ʻEha iki a pinepine nā ʻiʻo (myalgia). Eia naʻe, ʻaʻole loaʻa kēia ʻeha i nā kānaka a pau, a inā loaʻa ia, ʻaʻole ia he koʻikoʻi loa.

Eia kekahi laʻana, e noʻonoʻo he hoaaloha kāu i kapa ʻia ʻo Sunil. ʻAʻole hiki iā ia ke paʻa pono i kāna kīʻaha tī no kekahi manawa i kēia manawa, ke paheʻe mau nei ia mai kona lima aku. I kona hele ʻana e heluhelu i ka nūpepa, ua like kona lima me he mea lā e haʻalulu ana. I ka wā mua, ua manaʻo ʻo ia he luhi wale nō ia. Akā ma hope mai, ua ʻike ʻo ia he hōʻailona mua paha kēia o ka 'IBM'.

No ke aha e kū mai ai kēia ʻInclusion Body Myositis (IBM)? He aha ke kumu?

ʻO kaʻoiaʻiʻo, ʻo kēia kūlana i kapa ʻia ʻo 'Inclusion Body Myositis' he 'idiopathic'. ʻO ia hoʻi, me he mea lā e kū mai ana me ke kumu ʻole. E like me nā ʻano 'myositis' ʻē aʻe, ma kēia hihia, ʻo ka mumū lōʻihi i loko o nā ʻiʻo ('inflammatory chronic') ke kumu nui o ka nāwaliwali o nā ʻiʻo. Eia naʻe, ʻaʻole maopopo i nā mea noiʻi ke kumu o kēia mumū. Manaʻo lākou he pilikia paha ia me ka ʻōnaehana pale ('maʻi autoimmune') . ʻO ia hoʻi, hoʻouka hewa nā pūnaewele e pale ana i ko mākou kino i kā mākou mau pūnaewele ʻiʻo ponoʻī.

Pili pū nā 'kino hoʻokomo' i ka 'IBM'. He mau puʻupuʻu protein ʻano ʻē kēia i waiho ʻia i loko o nā ʻiʻo. Hiki ke hana ʻia e kahi maʻi viral, ka hōʻino ʻana o nā ʻiʻo, a i ʻole nā ​​hoʻololi genetic . ʻIke ʻia kēia mau 'kino hoʻokomo' i nā maʻi neurodegenerative e like me 'ALS'. Hiki iā lākou ke hoʻopilikia i ka hana maʻamau o nā ʻiʻo.

ʻO ka ʻokoʻa ma waena o ka 'Inclusion Body Myopathy' a me ka 'Inclusion Body Myositis'

I kekahi manawa, ua kapa ʻia ʻo 'Inclusion Body Myositis' ʻo 'sporadic inclusion body myositis (sIBM)'. ʻO ke ʻano o 'Sporadic' he mea ia e kū wale mai ana, a i ʻole me ke kumu kikoʻī. ʻO kēia ke hoʻokaʻawale iā ia mai nā kūlana like i hoʻoilina ʻia. ʻO nā mea i hoʻoilina ʻia ua kapa ʻia ʻo 'hereditary inclusion body myopathies (hIMB)'. Ke ʻōlelo mākou 'inclusion body myopathies', pili kēia mau ʻano ʻelua. Ke kamaʻilio nei mākou i kēia manawa e pili ana i ka 'sIBM' i kū wale mai ana.

Pehea e ʻike ʻia ai ka Inclusion Body Myositis? He aha nā hoʻokolohua e hana ʻia?

No ka ʻike ʻana inā loaʻa iā ʻoe ʻo IBM, e nīnau mua ke kauka iā ʻoe e pili ana i kāu mau hōʻailona a nānā i kou mau ʻiʻo. Hiki ke like nā hōʻailona o ka myositis kino inclusion me nā kūlana ʻē aʻe, e like me ka polymyositis a me ka myasthenia gravis. E ʻimi kāu kauka i nā mea kikoʻī e like me:

• He aha nā ʻiʻo i hoʻopilikia ʻia? (e.g., ma nā manamana lima a i ʻole nā ​​​​ʻūhā?)
• Hoʻokahi wale nō ʻaoʻao o ke kino i hoʻopilikia nui ʻia?
• Ua ʻike maopopo ʻia anei ka mae ʻana o nā ʻiʻo?
• ʻEhia ou makahiki i ka wā i hoʻomaka ai nā hōʻailona? (ʻO ka maʻamau ma hope o 50 mau makahiki)

A laila, hiki ke hana ʻia kekahi mau hoʻāʻo e "kāpae" i nā kūlana ʻē aʻe, e like me:

• Hoʻāʻo Creatine Kinase (CK): Ke ana kēia i ka pae o kahi enzyme kūikawā i loko o ke koko. Hiki ke piʻi aʻe kēia pae CK ke hōʻino ʻia nā ʻiʻo.
• Nā hoʻāʻo koko no nā maʻi a me nā maʻi autoimmune like ʻole.
• Electromyogram (EMG): Ke ana kēia i ka hana uila i loko o kou mau ʻiʻo. Hana ʻia ia ma ke kau ʻana i nā nila liʻiliʻi i loko o nā ʻiʻo.
• Haʻawina Hoʻoili Aʻalolo (NCS): Ke ana kēia i ka wikiwiki o ka hele ʻana o kahi impulse uila ma o nā aʻalolo (nā aʻalolo motor) e kaohi ana i kou mau ʻiʻo.

Hoʻāʻo biopsy ʻiʻo

ʻO ke ala maikaʻi loa e hōʻoia ai inā loaʻa iā ʻoe ka inclusion-body myositis, ʻo ia ke lawe ʻana i kahi ʻāpana liʻiliʻi o ka ʻiʻo (he biopsy) mai ka ʻiʻo i hoʻopilikia ʻia. E nānā kekahi pathologist i kēia hāpana ʻiʻo ma lalo o kahi microscope. Inā loaʻa iā ʻoe ka IBM, e hiki iā ia ke ʻike i nā kino inclusion (nā puʻupuʻu protein maʻamau ʻole, nā pehu, a i ʻole nā ​​​​vacuoles) i loko o ka hāpana.

Aia kekahi lāʻau lapaʻau kūpono no ka 'Inclusion Body Myositis'?

ʻO ka mea pōʻino, ʻaʻohe lāʻau lapaʻau kūpono no ka myositis kino hoʻokomo. ʻAʻole e like me nā kūlana mumū ʻē aʻe a me nā maʻi autoimmune, ʻaʻole ia e pane i nā corticosteroids a i ʻole nā ​​​​lāʻau immunosuppressant.

Akā, mai hoʻopau i ka manaʻolana! He mea nui ka hoʻōla kino a me ka hoʻoikaika kino mau e mālama i kou ikaika ʻiʻo no ka lōʻihi e hiki ai. Hiki i ka hoʻoikaika kino ke kōkua i ka pale ʻana i ka nāwaliwali hou ʻana o nā ʻiʻo.

I ka holomua ʻana o ka maʻi a lilo i mea paʻakikī ke hana i nā hana o kēlā me kēia lā, pono paha ʻoe e aʻo i nā ala hou e hana ai i nā mea. Maanei e hiki ai i ka hana lapaʻau hana ke kōkua. No ka laʻana, hiki iā lākou ke aʻo iā ʻoe pehea e hoʻohana ai i nā mea like ʻole e kōkua iā ʻoe e ʻaʻahu, ʻai, a kākau. Pono paha kekahi poʻe e aʻo pehea e hoʻohana ai i ka noho huila. Inā he pilikia kou ale ʻana, hiki i kahi Speech-Language Pathologist (SLP) ke kōkua. Hiki iā lākou ke aʻo iā ʻoe pehea e ale palekana ai a hana i nā hoʻomaʻamaʻa ale ʻana.

Inā loaʻa iaʻu ka 'Inclusion Body Myositis', he aha kaʻu e manaʻo ai?

Inā loaʻa iā ʻoe ka IBM, e piʻi mālie ia. E like me kaʻu i ʻōlelo ai ma mua,ʻAʻole kēia e hoʻopilikia i kou ola. Eia nō naʻe, hiki ke loaʻa ka hopena i kou ʻano ola. Pono paha ʻoe e hilinaʻi i nā poʻe ʻē aʻe a aʻo paha i nā ʻano hana hou. ʻAʻole nalowale ka hapa nui o ka poʻe i ko lākou hiki ke hele piha, akā pono paha kekahi i kahi noho huila ma hope o 10-15 mau makahiki.

Pehea e mālama ai iaʻu iho i koʻu ola ʻana me ka inclusion-body myositis?

Pono ʻoe e noho me ka 'Inclusion body myositis' no ka manawa lōʻihi, a hiki ke lilo i mea paʻakikī i ka hala ʻana o ka manawa. ʻO ke ala maikaʻi loa e hoʻoponopono ai i kēia, ʻo ia ka hana ʻana i kahi hoʻolālā lōʻihi e mālama i kou olakino kino a me ka noʻonoʻo. ʻO ia hoʻi ka hoʻomau ʻana i ka hoʻomaʻamaʻa ʻana i nā hana liʻiliʻi e kōkua iā ʻoe e noho maikaʻi. Eia kekahi laʻana:

• E hoʻomau i kāu papahana hoʻoikaika kino. Aia paha ʻoe i ka hoʻōla kino, a ua hoʻololi paha ʻoe i kahi papahana hoʻoikaika kino ma ka home. ʻO ka hoʻomau ʻana i kēia hana maʻamau e kōkua i ka mālama ʻana i kou mau ʻiʻo i ka ikaika e like me ka hiki.
• E hahai i kahi "ola olakino." Inā ʻai maikaʻi ʻoe, hiamoe maikaʻi, hoʻokele i ke kaumaha, a mālama i kāu mau pilina koʻikoʻi, e ʻoi aku ka maikaʻi o kou manaʻo ma ke ʻano holoʻokoʻa.
• E hui pū me nā hui kākoʻo. Hiki iā ʻoe ke loaʻa ka ikaika noʻonoʻo a me nā ʻōlelo aʻoaʻo kūpono mai nā poʻe ʻē aʻe i hele a i ʻole e hele nei i ka mea like me ʻoe. He mea maikaʻi nō hoʻi ke manaʻo e like me "ʻAʻole wau wale nō ka mea e hele nei i kēia."
• E nānā i nā hoʻololi ʻana ma ka home a ma ka hana. Nui nā mea kōkua neʻe a me nā mea kōkua e hiki ke kōkua i ka poʻe me ke kino kīnā e maʻalahi i nā hana o kēlā me kēia lā.
• E ʻike pinepine i kāu kauka. E hoʻomau i ka launa pū me kāu kauka. E haʻi koke aku i kāu kauka inā ʻike ʻoe i kekahi mau hōʻailona hou, e like me ka paʻakikī i ka ale ʻana, a inā e ʻoi aku ka ʻino o kahi hōʻailona e kū nei.
• E nānā i nā hoʻokolohua lapaʻau. Ke ʻimi mau nei nā kānaka noiʻi i nā lāʻau lapaʻau hou e hiki ke kōkua me ka myositis kino inclusion. Hiki iā ʻoe ke komo i kēia mau hoʻokolohua.

ʻO kēia kūlana, i kapa ʻia ʻo 'Inclusion body myositis', e kū pinepine ana i ka wā waena o ke ola, i ka wā ʻaʻohe manaʻolana. ʻAʻohe mea e manaʻo e loaʻa koke kahi maʻi hiki ʻole ke hoʻōla ʻia a holomua. Hiki ke paʻakikī iki ke hoʻomanawanui a wehewehe i ka poʻe e mālama ana iā ʻoe, ʻoiai inā ʻaʻole lākou i lohe i kēia maʻi ma mua.

Akā e hoʻomanaʻo, he maʻi ulu lohi loa kēia. No laila, nui ka manawa e noʻonoʻo ai i nā loli e hiki mai ana a hana i nā hoʻoponopono e like me ia. ʻAʻohe mea hiki ke ʻōlelo maopopo pehea e pili ai kēia iā ʻoe. Akā,Me kahi ʻano manaʻolana, nui nā mea hiki iā ʻoe ke hana e mālama i kou olakino holoʻokoʻa a me kou noho maikaʻi ʻana i nā makahiki e hiki mai ana.

Nā mea nui a mākou e hoʻomanaʻo ai (Leka Lawe-Home)

ʻAe, ua kamaʻilio nui mākou e pili ana i ka 'Inclusion Body Myositis (IBM)'. ʻO ka mea hope loa, eia nā mea nui e pono ai ʻoe e hoʻomanaʻo:

• He maʻi nāwaliwali o nā ʻiʻo ka IBM i ʻike nui ʻia ma hope o 50 mau makahiki. He ʻoluʻolu ka ʻeha, akā i ka hala ʻana o ka manawa hiki ke hoʻopilikia i nā hana o kēlā me kēia lā.
• ʻAʻohe lāʻau lapaʻau no kēia , akā hiki i ka hoʻoikaika kino a me ka hoʻoikaika kino ke kōkua i ka mālama ʻana i ka ikaika o nā ʻiʻo no ka lōʻihi.
• Hiki i nā hōʻailona ke komo pū me ka paʻakikī i ka hopu ʻana i nā mea, ka hele wāwae ʻana, a me ka paʻakikī i ka moni ʻana i ka meaʻai .
• ʻAʻole ʻike ʻia ke kumu kikoʻī ('idiopathic'), akā he pilikia paha ia me ka ʻōnaehana pale.
• Ua hōʻoia paʻa ʻia ka maʻi e kahi biopsy ʻiʻo.
• ʻAʻole kēia he mea hoʻoweliweli i ke ola , akā hiki iā ia ke hoʻopilikia i ka maikaʻi o ke ola.
• He mea nui loa ka noho maikaʻi ʻana, e hahai i nā ʻōlelo aʻoaʻo a ke kauka, a e loaʻa ke kākoʻo e pono ai.

Inā ʻoe a i ʻole kekahi āu i ʻike ai e ʻike nei i kēia mau hōʻailona, ​​​​ʻoi aku ka maikaʻi o ka ʻimi ʻana i ke aʻo lapaʻau. E hoʻomanaʻo, ʻaʻole ʻoe hoʻokahi, he nui ka poʻe e hiki ke kōkua!

Nāwaliwali o nā ʻiʻo, ka maʻi IBM, ka hoʻōla kino, nā maʻi ʻiʻo, ke olakino o ka poʻe ʻelemakule, nā pilikia ale ʻana, nā maʻi neurological