He kūlana laha ʻole e hoʻopilikia ana i ka lolo: Ua ʻike anei ʻoe i ka PML? (Progressive Multifocal Leukoencephalopathy - PML)

Ua lohe paha ʻoe i kahi maʻi i kapa ʻia ʻo PML (Progressive Multifocal Leukoencephalopathy)? ʻAʻole paha ʻoe i kamaʻāina i kēia inoa. ʻO ke kumu, he maʻi laha ʻole ka PML e hoʻopilikia ana i ko kākou lolo. ʻO ka mea e hana ʻia ana ma kēia , ʻo ia ka luku mālie ʻia ʻana o nā pūnaewele e hana ana i ka myelin, kahi uhi pale a puni nā pūnaewele nerve i loko o ko kākou lolo. He mea like ka Myelin me ka ʻaila. ʻO kēia ka mea e pale ai i nā neurons i loko o ka lolo a me ke kaula spinal (ko kākou ʻōnaehana nerve waena). No laila, i ka nalowale ʻana o kēia myelin, ua hōʻino ʻia ka mea keʻokeʻo i loko o ka lolo.

He aha ke ʻano o ka inoa ʻo PML?

I kēia manawa, e nānā kākou i ke ʻano o nā leka ma ka inoa ʻo PML. ʻO ka hoʻomaopopo ʻana i kēia e hāʻawi iā ʻoe i kahi manaʻo maʻamau o ka maʻi.

• P — Holomua: ʻO ke ʻano kēia e lilo mālie ana ka maʻi i mea ʻino . ʻO ke ʻano kēia e hoʻonui paha nā hōʻailona i ka hala ʻana o ka manawa.
• M — Multifocal: ʻO ke ʻano kēia, ʻaʻole i kaupalena ʻia ka maʻi i hoʻokahi wahi o ka lolo, akā hoʻopilikia i nā wahi he nui . Me he mea lā he mau ʻeha liʻiliʻi ma nā wahi he nui o ka lolo.
• L — Leukoencephalopathy: He ʻano paʻakikī iki kēia huaʻōlelo, ʻeā? I ka ʻōlelo maʻalahi, ʻo ia hoʻi, ʻo ka maʻi ka mea nui e pili ana i ka myelin, a i ʻole ka mea keʻokeʻo, i loko o ka lolo .

No laila, hoʻopilikia ka PML i ka lolo. Hiki i kēia hōʻino ke alakaʻi i nā ʻano pilikia neurological like ʻole. No ka laʻana, ka hemahema o ka noʻonoʻo, nā pilikia ʻike, a me ka paʻakikī i ka hele wāwae. No ka mea he maʻi holomua ka PML, hiki ke ʻoi aku ka ʻino i ka hala ʻana o ka manawa. Eia nō naʻe, no kekahi poʻe, hiki i ka mālama mua ʻana ke lohi i ka holomua o ka maʻi.

He aha nā hōʻailona mua o PML?

No nā kānaka he nui, hoʻomaka nā hōʻailona o ka PML me ka maʻalahi loa. Eia kekahi, hiki ke ʻokoʻa nā hōʻailona ma muli o ka ʻāpana o ka lolo i hoʻopilikia ʻia e ka maʻi. E noʻonoʻo e like me ka wā e make ai kahi lālā o kahi lāʻau, e pau nā hana ʻē aʻe ma kēlā lālā i ka hana.

ʻO nā hōʻailona mua o PML e komo pū paha:

• Ka palaualelo a i ʻole ka nele o ka hoʻonohonoho ʻana
• Paʻakikī i ka ʻōlelo ʻana a i ʻole ka noʻonoʻo ʻana
• Manaʻo nāwaliwali i ke kino

I ka holomua ʻana o ka maʻi, hiki iā ʻoe ke ʻike i nā hōʻailona e like me:

• Dementia, nalowale o ka hoʻomanaʻo
• Poho ʻōlelo
• Pohō ka ʻike
• Nā loli ʻano a me ke ʻano

Hiki i kekahi poʻe ke loaʻa i nā ʻeha poʻo a i ʻole nā ​​hopu ʻana, akā he mea kakaikahi kēia. ʻO ka mea pōʻino, ʻoi aku ka ʻino o ka PML i ka hala ʻana o ka manawa, aHiki ke make pinepine. Eia nō naʻe, ʻokoʻa paha nā hopena ma muli o nā kūlana olakino o ka mea maʻi a me ka pane ʻana i ka lāʻau lapaʻau.

He aha ke kumu o ka PML?

Hoʻokumu ʻia ka PML e kahi maʻi i kapa ʻia ʻo JC virus (JCV) . Ua kapa ʻia ka maʻi ma hope o ka leka mua o ka inoa o ke kanaka i loaʻa mua i ka maʻi (John Cunningham). Ua ʻike ʻia kēia maʻi ʻo human polyomavirus 2.

ʻO ka mea kupanaha, ma kahi o 85% o nā pākeke i loaʻa ka maʻi JC i loko o ko lākou kino. Akā, ʻaʻole maopopo i nā loea pehea e laha ai ka maʻi i nā kānaka. Aia kekahi mau hōʻike e hiki i nā keiki ke loaʻa iā ia ma o ka meaʻai a i ʻole ka wai. Ua loaʻa pū ka maʻi i nā hoʻāʻo mimi. No laila, hiki ke laha ma o ka haumia o ka mimi-waha.

Eia nō naʻe, ʻoiai he nui ka poʻe i loaʻa ka maʻi JC i loko o ko lākou kino, ʻaʻole ia e lilo i mea hana, e moe wale ana ia. No laila, ʻaʻohe hōʻailona e ʻike ʻia. Eia nō naʻe, i loko o kekahi kanaka me ka ʻōnaehana pale nāwaliwali, hiki i kēia maʻi ke lilo i mea hana i loko o ke kino a ulu i PML. Ua like ia me ka ʻenemi hiamoe e ala aʻe a hoʻouka iā mākou i ka wā nāwaliwali mākou.

ʻO wai ka mea i pilikia nui i ka loaʻa ʻana o kēia maʻi?

ʻO ka maʻamau, loaʻa wale ka PML i nā poʻe me nā ʻōnaehana pale nāwaliwali loa. Hiki paha iā ʻoe ke loaʻa i kēia maʻi inā loaʻa iā ʻoe kekahi o kēia mau kūlana:

• Ka maʻi HIV/AIDS
• ʻO nā maʻi ʻaʻai o ke koko a me ka iwi iwi, no ka laʻana, leukemia
• ʻO ke kanesa o ka ʻōnaehana lymphatic, no ka laʻana, lymphoma a i ʻole ka maʻi Hodgkin
• Nā maʻi Autoimmune, e like me ka rheumatoid arthritis, multiple sclerosis (MS), a i ʻole lupus

Eia kekahi, inā he mea hāʻawi ʻoe i nā ʻōkana a ke lawe nei ʻoe i nā lāʻau immunosuppressant e pale ai i kou kino mai ka hōʻole ʻana i ke ʻōkana, hiki paha iā ʻoe ke pilikia.

Pehea e ʻike ai nā kauka i ka PML?

E nānā mua kāu kauka iā ʻoe a hoʻolohe pono i kāu mau hōʻailona. A laila, hiki iā lākou ke hōʻoia i ka PML ma ka hana ʻana i kekahi mau hoʻokolohua e nānā i kou lolo a me ke kaulahao iwi kuamoʻo. Pono paha ʻoe e loaʻa nā hoʻokolohua e like me kēia:

• ʻO ke kiʻi MRI lolo: Hiki i kēia ke kiʻi i nā kiʻi o nā ʻeha i loko o ka mea keʻokeʻo o ka lolo. Ua like ia me kahi kāmela e nānā ana i loko o ka lolo.
• ʻO ka spinal tap/lumbar puncture: Pili kēia i ka lawe ʻana i kahi laʻana liʻiliʻi o kāu wai cerebrospinal (CSF), ka wai e hoʻopuni ana i kou lolo a me ke kaula spinal. Hiki i kēia ke nānā i ke alo o ka maʻi JC.
• Biopsy lolo: Hana kākaʻikahi ʻia kēia. Hana ʻia ia ke paʻakikī ke hōʻoia i ka hōʻoia.

Pehea e mālama ʻia ai ka PML?

ʻO ke kumu nui o ka mālama ʻana i ka PML, ʻo ia ka hoʻoikaika ʻana i kou ʻōnaehana pale. E hoʻomanaʻo, loaʻa nā maʻi ke nāwaliwali nā pale o ko mākou kino. No laila, ʻo ka mea nui loa, ʻo ia ka hoʻoikaika hou ʻana i kēlā pale.

• Eia kekahi laʻana, inā loaʻa iā ʻoe ka maʻi AIDS, hiki ke hāʻawi ʻia iā ʻoe ka lāʻau antiretroviral (ART) . Hana kēia mau lāʻau lapaʻau ma ka hōʻemi ʻana i ka nui o ka maʻi HIV i loko o kou kino. Hiki i kēia lāʻau lapaʻau ke kōkua i kāu ʻōnaehana pale e hana i kekahi ʻano.
• Hiki i kekahi poʻe ke pōmaikaʻi mai kahi lāʻau i kapa ʻia ʻo ka hoʻololi plasma . Hoʻopau kēia lāʻau i kekahi o nā lāʻau immunosuppressant mai kou koko. Hiki i kēia lāʻau ke kōkua i kāu ʻōnaehana pale e hakakā i ka maʻi JC ma ka hoʻoikaika ʻana i kāna hana.

Ke hoʻāʻo nei nā kānaka ʻepekema i kekahi mau lāʻau lapaʻau hou e mālama ai i ka PML. Ua hāʻawi ka US Food and Drug Administration (FDA) i ka ʻae kūikawā no kekahi poʻe e hoʻohana i kēia mau lāʻau lapaʻau, akā ua hui pū ʻia nā hopena.

Āhea wau e ʻike ai i ke kauka?

Inā ʻike ʻoe ua nāwaliwali kou ʻōnaehana pale maʻi a manaʻo ʻoe e ulu mālie ana nā hōʻailona āu e manaʻo nei e pili ana i ka Progressive Multifocal Leukoencephalopathy (PML), he mea nui loa e ʻike koke i ke kauka a e nānā ʻia.

He aha nā nīnau e pono iaʻu e nīnau aku i kaʻu kauka?

Ke ʻike ʻoe i kāu kauka, hiki iā ʻoe ke nīnau i nā nīnau e like me kēia:

• He aha koʻu pilikia o ka loaʻa ʻana o ka PML?
• Aia kekahi mea hiki iaʻu ke hana e hōʻemi i kēia pilikia?
• He aha nā hōʻailona e pono iaʻu e makaʻala i ka wā o PML?
• He aha nā pilikia o ka lawe ʻana i nā lāʻau immunosuppressant?
• Aia kekahi mau lāʻau lapaʻau ʻē aʻe no koʻu maʻi?
• He aha nā pilikia a me nā pono o nā lāʻau lapaʻau o kēia manawa?

Ma ka nīnau ʻana i kēia mau nīnau, hiki iā ʻoe ke hoʻomaopopo maikaʻi aʻe i ka maʻi a me kāna mālama ʻana.

He aha ka manaʻolana e ola ai kekahi maʻi PML?

He kumuhana paʻakikī loa kēia e kamaʻilio e pili ana. He maʻi holomua ka PML. ʻO ke ʻano kēia e ʻoi aku ka ʻino o nā hōʻailona i ka hala ʻana o ka manawa. ʻO ke ola o ke kanaka me PML e pili ana i ke koʻikoʻi o ka maʻi a me ka lāʻau i loaʻa iā lākou. Ma waena o 30% a me 50% o ka poʻe e make i loko o nā mahina mua ma hope o ka hōʻoia ʻana. ʻO ka poʻe e ola lōʻihi ana e hoʻomau i ka loaʻa ʻana o nā hōʻailona, ​​a ʻoi aku ka ʻino o kēlā mau hōʻailona. Hiki i kēia mau hōʻailona ke alakaʻi i nā pilikia koʻikoʻi, e like me ka nalowale o ka ʻōlelo a me ka nalowale o ka ʻike.

Eia nō naʻe, ua hōʻike ʻia nā noiʻi hou e hiki i kahi poʻe liʻiliʻi me ka PML i loaʻa i ka maʻi HIV ke hoʻopaʻa i ko lākou maʻi a ola lōʻihi. Ma mua o ka hiki ʻana mai o ka lāʻau antiretroviral (ART) e mālama ai i ka maʻi HIV, he 10% wale nō o ka poʻe me PML i ola ma mua o hoʻokahi makahiki. I kēia manawa, me ka ART, ua piʻi ka helu ola hoʻokahi makahiki i 50%. I kekahi mau hihia, hiki i ka ART ke kōkua i ka ʻōnaehana pale e hakakā i ka maʻi JC.

Hiki ke ho'ōla piha ʻia mai ka PML?

Hiki i ka poʻe i loaʻa i ka PML i ka wā e lawe ana i nā lāʻau immunosuppressant ke hoʻōla ma hope o ka hoʻōki ʻana i nā lāʻau. Hiki i ka poʻe i mālama pono ʻia me ka ART ke hoʻōla mai ka PML. Eia nō naʻe, 80% o ka poʻe i ola i ka PML ʻaʻole i hoʻi hou mai ko lākou mau hōʻailona. ʻO kēia no ka mea ʻaʻole i hana ʻia ka myelin hou ma nā wahi i hōʻino ʻia. He mea maʻamau ka hōʻino neurological mau loa. Eia nō naʻe, hiki i kekahi poʻe ke ola a hiki i 15 mau makahiki ma hope o ka pau ʻana o ka PML.

He aha nā mea e manaʻo ʻia no ka poʻe e hana ana i ka hoʻololi plasma?

Inā ua hoʻomaka kāu mau hōʻailona PML ma muli o kahi lāʻau immunosuppressant, e nalowale paha kāu mau hōʻailona ke hoʻōki ʻoe i ka lawe ʻana i kēlā lāʻau. Hiki iā ʻoe ke loaʻa ka hoʻololi plasma e wehe i kekahi o nā lāʻau immunosuppressant mai kou kino. ʻO ka pahuhopu o ka hoʻololi plasma ka hoʻoikaika ʻana i kāu ʻōnaehana pale. No kekahi poʻe, hiki i ka hoʻololi plasma ke hoʻolohi i ka holomua o ka PML a hoʻolōʻihi i ke ola. Eia nō naʻe, ʻaʻole i maopopo loa nā pono o kēia.

Hiki i nā poʻe he nui ke hoʻomau i ka loaʻa ʻana o nā hōʻailona o PML ma hope o ka hoʻōki ʻana i kahi lāʻau lapaʻau a i ʻole ma hope o ka loaʻa ʻana o ka hoʻololi plasma. Hiki i kekahi ke loaʻa nā pilikia neurological. Aia kekahi mau pilikia ʻē aʻe o ka hoʻōki ʻana i kahi lāʻau lapaʻau. No laila, he mea nui e kamaʻilio me kāu kauka i ka wā e hoʻoholo ai e pili ana i kāu mau lāʻau lapaʻau.

Pehea e ʻike ai au inā aia wau i ka pilikia o ka loaʻa ʻana o ka Progressive Multifocal Leukoencephalopathy (PML)?

Inā loaʻa iā ʻoe kahi maʻi e hoʻonāwaliwali ai i kāu ʻōnaehana pale, e nīnau i kāu kauka e pili ana i kou pilikia o ka hoʻomohala ʻana i ka PML.

Ke hoʻonui nei nā pilikia olakino ʻē aʻe i koʻu pilikia o ka hoʻomohala ʻana i ka PML?

Pono hoʻi nā kānaka me nā maʻi e like me ka multiple sclerosis (MS) a i ʻole ka maʻi Crohn e hana i kahi hoʻāʻo koko e nānā i nā kūlana e like me ka HIV e hoʻonui ai i ka pilikia o ka maʻi JC.

Hoʻomaʻamaʻa pinepine nā kauka i kahi lāʻau i kapa ʻia ʻo Natalizumab (Tysabri®) e mālama i ka MS a i ʻole ka maʻi Crohn. Hiki i kēia lāʻau ke hoʻonui i ka pilikia o ka hoʻomohala ʻana i ka PML.

ʻOiai inā loaʻa iā ʻoe ka maʻi JC hana ʻole a ʻaʻohe hōʻailona, ​​hiki paha iā ʻoe ke lawe i ka natalizumab. Eia nō naʻe, he mea nui e kamaʻilio me kāu kauka e pili ana i nā pilikia a me nā pono.

ʻO ka mea hope loa, nā mea e hoʻomanaʻo ai (Leka Lawe-Home)

ʻO ka Progressive Multifocal Leukoencephalopathy (PML) kahi maʻi lolo laha ʻole i hoʻokumu ʻia e ka hoʻāla hou ʻana o ka maʻi JC. Loaʻa i ka hapa nui o ka poʻe ka maʻi JC e moe ana i loko o ko lākou kino. ʻAʻole ia e hōʻeha i ka poʻe i nāwaliwali ʻole ka ʻōnaehana pale.

Inā he nāwaliwali kou ʻōnaehana pale maʻi, he mea nui e ʻike i nā hōʻailona o PML a hana pū me kāu kauka e hana pēlā.

ʻO ka maʻamau, e ʻoi aku ka ʻino o kēia maʻi i ka hala ʻana o ka manawa. Eia nō naʻe, aia nā lāʻau lapaʻau e hiki ke kōkua i ka hoʻolohi ʻana i ka holomua o ka maʻi a hoʻolōʻihi i kou ola. No laila, mai hoʻopau i ka manaʻolana. ʻO ka mea nui loa, ʻo ia ke ʻimi i ke kōkua lapaʻau i ka wā hikiwawe loa.

PML , Progressive Multifocal Leukoencephalopathy, JC virus, nā maʻi lolo, ʻōnaehana pale, nā maʻi neurological, myelin