I kekahi mau lā, manaʻo nui ʻole ia, ʻoi aku ka ʻino o kou ʻike, nāwaliwali kou kino... Akā ma hope o kekahi manawa, e ʻoi aku ka maikaʻi o kēia mau mea a pau. Ma hope o kekahi manawa, ʻike hou ʻia kēia mau hōʻailona. Ua loaʻa anei iā ʻoe kēia ʻike? ʻO kēia ke ʻano o RRMS, ke ʻano maʻamau o ka Multiple Sclerosis (MS). Ma muli o ke ʻano o kēia mau hōʻailona, he mea maʻamau ke manaʻo nui i ka hopohopo a me ka makaʻu i kekahi manawa. E kamaʻilio maʻalahi kākou e pili ana i kēia, ma ke ʻano hiki iā ʻoe ke hoʻomaopopo.
He aha wale nō ka RRMS?
ʻO RRMS ke kū nei no `(Relapsing-Remitting Multiple Sclerosis)`. ʻO kēia ke ʻano maʻamau o `(Multiple Sclerosis)` a i ʻole MS. Ma kahi o 80 a 85 o 100 mau maʻi MS i loaʻa i kēia maʻi.
He manaʻo ko kēia ma kona inoa.
- Hoʻi hou: Pili kēia i ka ʻike koke ʻia ʻana o nā hōʻailona hou a i ʻole ka ʻino ʻana o nā hōʻailona e kū nei. Hiki i kēia ke mau mai kekahi mau lā a i kekahi mau pule. Ua kapa ʻia hoʻi kēia he "flare-up" a i ʻole "exacerbation".
- Ke hoʻihoʻi nei: ʻO kēia ka manawa e nalo mālie ai nā hōʻailona o ka maʻi i hoʻonui ʻia a nalowale loa paha i ka hala ʻana o ka manawa. I loko o kēia manawa, hiki iā ʻoe ke ola i kahi ola maʻamau me ka ʻole o nā hōʻailona.
E noʻonoʻo e like me ka ʻino. I ka manawa koke, hiki mai nā hōʻailona e like me ka ʻino a hoʻoluhi iā ʻoe. A laila mālie ka ʻino, a laila mālie hou no kekahi manawa. ʻO ia ke ʻano o RRMS.
Ua hoʻokaʻawale ʻia ka maʻi ma kēia ʻano e kōkua iā ʻoe a me kāu kauka e hoʻomaopopo i ke ʻano o ka maʻi a koho i ka lāʻau lapaʻau kūpono loa iā ʻoe.
He aha nā hōʻailona maʻamau i ʻike ʻia ma RRMS?
Hiki ke ʻokoʻa loa nā hōʻailona o ka RRMS mai kēlā kanaka a kēia kanaka, akā aia kekahi mau hōʻailona maʻamau. E nānā kākou i ke ʻano o lākou.
| Hōʻailona | He wehewehe maʻalahi |
|---|---|
| Nā loli o ka ʻike | Nā mea e like me ka ʻike maka pōwehiwehi, ʻike pono ʻole ʻia nā kala, ʻike pālua, a me ka ʻeha i ka neʻe ʻana o nā maka. |
| ʻUʻu a nalowale paha ka manaʻo | He ʻano ʻūlū ma nā wahi like ʻole o ke kino, e like me nā lima, nā wāwae, a me ke alo. I kekahi manawa, ʻaʻohe paha he ʻano ma kēlā mau wahi. |
| Paʻa ka umauma/ʻōpū | Me he mea lā e ʻapo pono ana kekahi iā ʻoe a puni kou umauma a ʻōpū paha. Ua kapa pū kekahi poʻe i kēia he "MS hug." |
| Luhi hiki ʻole ke noʻonoʻo ʻia | He luhi nui loa a hiki ʻole ke wehewehe ʻia āu e ʻike ai ma hope o ka hiamoe maikaʻi ʻana. He ʻokoʻa loa kēia mai ka luhi maʻamau. |
| Nā pilikia mimi a me ka ʻōpū | Nā pilikia e like me ka hiki ʻole ke hoʻōki i ka wā e pono ai ʻoe e mimi (urgency), a i ʻole ka pilikia e hoʻomaka i ka wā e makemake ai ʻoe e mimi (hesitation). |
| He manaʻo e like me ka haʻalulu uila. | Ke kūlou ʻoe i kou ʻāʻī i mua, e manaʻo paha ʻoe e like me kahi haʻalulu uila e iho ana i lalo o kou iwi kuamoʻo. |
| Ka paʻakikī o ka hele wāwae a me nā pilikia ʻiʻo | Ua nalowale kou kaulike i ka wā e hele ana, nāwaliwali kou mau ʻiʻo, a i ʻole ua paʻakikī kou manaʻo. |
| Nā pilikia me ka hoʻomanaʻo a me ka nānā ʻana | Lilo i mea paʻakikī ke hoʻomanaʻo i nā mea, a ʻaʻole hiki iā ʻoe ke kau i ka manaʻo ma kahi mea hoʻokahi. Ua kapa ʻia hoʻi kēia he "noe lolo". |
I ka wā o ka hoʻāla ʻana o ka maʻi, hiki ke ʻike pū ʻia kekahi o kēia mau hōʻailona. No kekahi poʻe, nalowale loa kēia mau hōʻailona i ka wā e hoʻomaha ai. No kekahi poʻe, hiki ke hoʻomau kekahi mau hōʻailona. Akā , mai hopohopo , aia nā lāʻau lapaʻau e loaʻa ana e mālama i kēia mau hōʻailona mau.
He aha nā kumu e kōkua ai i ka hoʻonui ʻia ʻana o kēia mau hōʻailona?
I kekahi manawa e ʻike paha ʻoe he mea e hoʻonui ai i kou mau hōʻailona kekahi mau mea. Kāhea mākou i kēia mau "Triggers." Akā e hoʻomanaʻo, ʻo ka mea e hoʻopilikia ai i kekahi kanaka ʻaʻole paha e hoʻopilikia i kekahi.
- Kaumaha: Hiki ke ʻike ʻia nā hōʻailona i nā manawa o ke kaumaha nui.
- Mahana: Hiki i ka wela nui, a i kekahi manawa he anu nui, ke hoʻonui i nā hōʻailona.
- Nā maʻi: ʻOiai kahi maʻi liʻiliʻi, e like me ke anu a i ʻole ka maʻi ʻōpū mimi, hiki ke hoʻāla hou i nā hōʻailona MS kahiko.
- Puhipaka: ʻO ka hoʻohana ʻana i nā huahana paka kekahi kumu o ka hoʻonui ʻana o ka maʻi.
- Ka nele o ka wikamina D: Hiki i nā pae haʻahaʻa o ka wikamina D i ke kino ke hoʻopilikia.
No ke aha e ulu ai ʻo MS? He aha ke kumu?
ʻAʻole maopopo ke kumu maoli o MS, akā ua manaʻo ʻia he maʻi autoimmune .
I ka ʻōlelo maʻalahi, hoʻouka hewa ka ʻōnaehana pale o ko mākou kino (ʻōnaehana pale) i nā ʻāpana olakino o ko mākou kino ponoʻī. I ka MS, kuhikuhi ʻia kēia hoʻouka kaua i ko mākou ʻōnaehana nerve waena (lolo a me ke kaula iwi kuamoʻo).
I ka pololei, ua hōʻino ʻia ka uhi pale a puni nā aʻalolo i loko o ka lolo a me ke kaula kuamoʻo. Kāhea mākou i kēia ʻo "Myelin". Ua like ia me ka ʻūpā palakiko a puni kahi uea uila. Ke hōʻino ʻia kēia ʻūpā, ʻaʻole hele pono nā leka aʻalolo. ʻO ia ka manawa e ʻike ʻia ai nā hōʻailona a mākou i kamaʻilio ai.
Ua ʻike ʻia nā noiʻi he hiki ke hoʻopili ʻia kēia e kahi predisposition genetic a me nā kumu kaiapuni e like me ka maʻi Epstein-Barr.
Pehea e ʻike ʻia ai ka RRMS?
Hiki ke paʻakikī ka ʻike ʻana iā MS no ka mea ʻaʻohe hoʻāʻo hoʻokahi a paʻa. E hoʻohana kāu kauka i kāu mau hōʻailona, ka mōʻaukala olakino, a me nā hopena o kekahi mau hoʻāʻo e hiki ai i kahi hopena.
- MRI scan: Hiki i kēia ke nānā i nā wahi i hōʻino ʻia (nā ʻeha / nā ʻōpala) i ka ʻūhā nerve (myelin) i loko o ka lolo a me ke kaula spinal.
- Lumbar Puncture: Pili kēia i ka lawe ʻana i ka wai o ka iwi kuamoʻo a me ka ʻimi ʻana i nā hōʻailona o nā kāʻei oligoclonal like MS. Hiki i kēia ke hāʻawi i kahi manaʻo inā he mumū i loko o ka lolo/kaula iwi kuamoʻo.
- Nā hoʻāʻo koko: Kōkua kēia i ka hoʻopau ʻana i nā maʻi ʻē aʻe i loaʻa nā hōʻailona like me MS.
- ʻO ke scan OCT (Optical Coherence Tomography): He hoʻāʻo ʻeha ʻole kēia e scan i nā aʻalolo ma ke kua o ka maka (ka retina). Hiki iā ia ke nānā no ka hōʻino ʻia o nā aʻalolo optic ma muli o MS.
He aha nā lāʻau lapaʻau no ka RRMS?
ʻOiai ʻaʻohe lāʻau lapaʻau i loaʻa e hoʻōla loa iā MS,Aia nā lāʻau lapaʻau kūpono loa i kēia lā e hiki ke kaohi i ka maʻi a hoʻololi i ke ala o ka maʻi.
ʻO nā pahuhopu nui o kēia mau lāʻau lapaʻau:
- Ka hoʻemi ʻana i ka helu o nā relapses.
- Hoʻemi i ka pōʻino hou i ka ʻōnaehana nerve.
- Ke hoʻolohi nei i ka wikiwiki o ka ʻino ʻana o nā hōʻailona.
Loaʻa kēia mau lāʻau lapaʻau i nā ʻano like ʻole, me nā inikini, nā lāʻau lapaʻau waha, a me nā infusions intravenous, e like me ka saline.
Ua kapa pinepine ʻia kēia mau lāʻau lapaʻau he "Disease-Modifying Agents" (DMTs). Hana lākou ma ka hoʻololi ʻana i ke ʻano o ka maʻi a me ka pale ʻana i ka hōʻino ʻana i ka ʻōnaehana nerve i ka wā e hiki mai ana. No laila , he mea nui loa ka hoʻomaka ʻana i ka lāʻau i ka wā hikiwawe loa.
E kamaʻilio ākea me kāu kauka e pili ana i ka lāʻau lapaʻau kūpono loa iā ʻoe a me nā hopena ʻaoʻao. E hāʻawi ʻo ia iā ʻoe i ka hopena maikaʻi loa.
Pehea lā ke ʻano o ke ola me kēia maʻi?
He mea maʻamau ka makaʻu a me ka hopohopo ke ʻike ʻoe he maʻi mau kou e like me kēia. Akā ʻo ka ʻoiaʻiʻo, ʻoiai me MS, hiki iā ʻoe ke ola i kahi ola lōʻihi, hauʻoli, a holomua.
Ua nui nā holomua i nā mālama ʻana iā MS i nā makahiki i hala iho nei, e maʻalahi ai ka kaohi ʻana i ke ʻano o ka maʻi.
Ma hope o ka loaʻa ʻana o ka RRMS i kekahi poʻe no kekahi manawa, hiki iā lākou ke loaʻa i kahi kūlana kahi e piʻi mālie ai nā hōʻailona, akā e emi ana ka nui o nā relapses. Ua kapa ʻia kēia ʻo "Secondary Progressive Multiple Sclerosis (SPMS)". Eia nō naʻe, me ka mālama mua a kūpono, hiki ke pale ʻia a hoʻopaneʻe ʻia paha kēia kūlana.
Āhea ʻoe e ʻike ai i kāu kauka?
- Inā loaʻa iā ʻoe nā hōʻailona hou a i ʻole inā e ʻoi aku ka ʻino o kāu mau hōʻailona.
- Inā hoʻoulu ka lāʻau i nā hopena ʻaoʻao.
- Inā he mau nīnau a hopohopo paha kāu e pili ana i ka maʻi.
Leka Lawe-Home
- ʻO RRMS ke ʻano maʻamau o MS, a ua hōʻailona ʻia e nā pōʻaiapuni o ka hoʻi hou ʻana a me ke kala ʻana.
- ʻOkoʻa nā hōʻailona mai kēlā kanaka a kēia kanaka. He mea maʻamau nā pilikia o ka ʻike maka, ke kani ʻana, a me ka luhi nui.
- ʻOiai ʻaʻohe kumu kikoʻī no kēia, ua manaʻo ʻia he maʻi autoimmune.
- ʻOiai ʻaʻole hiki ke ho'ōla loa ʻia ka maʻi, aia nā lāʻau lapaʻau kūpono loa (DMT) i kēia lā e kāohi i ka maʻi a pale i ka hōʻino ʻana o nā aʻalolo.
- He mea nui loa ka ʻike mua ʻana a me ka mālama ʻana no ka wā e hiki mai ana.
- E kamaʻilio ākea me kāu kauka e pili ana i kou kūlana, ka lāʻau lapaʻau, a me nā nīnau āu e loaʻa ai.
- Hiki i ka noho ʻana me kahi maʻi mau ke paʻakikī i ka noʻonoʻo. Mai kānalua e ʻimi i ke kākoʻo o kahi loea olakino noʻonoʻo inā pono.
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