He aha ka Myelofibrosis? Nā Hōʻailona, Nā Kumu, & Ka Hoʻōla

ʻO ka myelofibrosis kahi maʻi koko maʻamau e pili ana i kou iwi ʻōiwi, ka ʻiʻo palupalu i loko o kou mau iwi kahi i hana ʻia ai nā keʻena koko. I kēia kūlana, ua pani ʻia ka ʻiʻo ʻili i ka iwi ʻōiwi olakino, e ʻoi aku ka paʻakikī o kou kino e hana i nā keʻena koko maʻamau.

Hana ʻia kēia ma muli o nā keʻena kumu kūpono ʻole i loko o kou iwi ʻōiwi e hoʻonui koke a hoʻonāukiuki i ka mumū. I ka hala ʻana o ka manawa, alakaʻi kēia i ka ʻili ʻana e hiki ke hoʻopilikia i ka hiki o kou kino ke hana i nā keʻena koko ʻulaʻula, nā keʻena koko keʻokeʻo, a me nā platelets. ʻOiai ke kani ʻino nei, hiki i ka hoʻomaopopo ʻana i kēia kūlana ke kōkua iā ʻoe e ʻoi aku ka mākaukau a me ka mana.

He aha nā hōʻailona o ka myelofibrosis?

ʻAʻole ʻike nui nā kānaka me ka myelofibrosis mua i kekahi hōʻailona, ​​ʻo ia ke kumu i ʻike ʻia ai i kekahi manawa i nā hoʻokolohua koko maʻamau. Ke ʻike ʻia nā hōʻailona, ​​hoʻomohala pinepine lākou i ke ʻano mālie a hiki ke like me ka luhi o kēlā me kēia lā a i ʻole ke kaumaha.

ʻO nā hōʻailona maʻamau āu e ʻike ai, ʻo ia ka manaʻo luhi a nāwaliwali, ʻoiai ma hope o ka loaʻa ʻana o ka hiamoe lawa. Hana ʻia kēia no ka mea ʻaʻole lawa nā keʻena koko ʻulaʻula olakino e lawe i ka oxygen ma o kou ʻōnaehana.

Eia nā hōʻailona i ʻike pinepine ʻia e nā kānaka me ka myelofibrosis:

• Ka luhi mau a me ka nāwaliwali ʻaʻole e hoʻomaikaʻi me ka hoʻomaha
• Ka hanu pōkole i nā hana maʻamau
• ʻIli ʻōmaʻomaʻo, ʻike ʻia ma kou maka, lima, a i ʻole nā ​​papa kui
• ʻO ka ʻeha maʻalahi a i ʻole ka kahe koko maʻamau mai nā ʻoki liʻiliʻi
• Nā maʻi pinepine e lōʻihi ka hoʻōla
• Ka manaʻo piha koke i ka ʻai ʻana, ʻoiai nā meaʻai liʻiliʻi
• ʻEha a i ʻole ʻeha ma kou ʻaoʻao hema, ma lalo o kou mau iwi ʻaoʻao
• Ka nalowale kaumaha kūpono ʻole
• Nā sweat o ka pō e hoʻoinu i kou kapa a i ʻole nā ​​pale
• Ka mahana haʻahaʻa me ka kumu maopopo ʻole

Loaʻa nō hoʻi i kekahi poʻe ka ʻeha o nā iwi, ʻoi aku ma nā iwi lōʻihi e like me nā lima a me nā wāwae. Hiki i kēia ʻeha ke like me ka ʻeha hohonu a ʻoi aku ka ʻike ʻia i ka pō. Ke ulu nei kēia mau hōʻailona no ka mea e hoʻonui pinepine ʻia kāu spleen i ka hoʻāʻo ʻana e lawe i kekahi o ka hana hana koko i hiki ʻole i kāu iwi ʻiwi ke lawelawe pono.

He aha nā ʻano o ka myelofibrosis?

ʻElua mau ʻano nui o ka myelofibrosis, a ʻo ka hoʻomaopopo ʻana i ke ʻano āu e loaʻa ai e kōkua i kāu kauka e hoʻolālā i ke ala mālama maikaʻi loa. ʻO ka ʻokoʻa ka ulu ʻana paha o ke kūlana ma kona iho a ma hope paha o ka maʻi koko ʻē aʻe.

Ke ulu pololei nei ka myelofibrosis mua i loko o kāu iwi ʻiwi me ka ʻole o ke kūlana koko ma mua. ʻO kēia ʻano e pili pinepine ana i nā kānaka ma luna o 60, ʻoiai hiki ke loaʻa i nā ʻōpio. Ke holomua nei ia me ka mālie, a nui nā kānaka e noho pū me ia no nā makahiki ʻoiai e mālama ana i ka maikaʻi o ke ola.

Ke ulu nei ka myelofibrosis lua ma hope o kou loaʻa ʻana i ka maʻi koko ʻē aʻe i kapa ʻia ʻo ka myeloproliferative neoplasm. ʻO nā kūlana ʻelua maʻamau e hiki ke alakaʻi i ka myelofibrosis lua ʻo ka polycythemia vera, kahi e hana nui ai kou kino i nā pūnaewele koko ʻulaʻula, a me ka essential thrombocythemia, kahi e hana nui ai ʻoe i nā platelets.

Hiki i nā ʻano ʻelua ke hoʻokumu i nā hōʻailona a me nā pilikia like. Eia naʻe, hiki i ka myelofibrosis lua ke holomua me ka ʻike maopopo ʻana no ka mea hiki i nā kauka ke hahai pinepine i kona ulu ʻana mai ke kūlana ma mua. E noʻonoʻo kāu hui lapaʻau i kāu ʻano kūikawā i ka wā e kūkākūkā ana i nā koho mālama a me nā mea e manaʻo ai i ka wā e hiki mai ana.

He aha ka mea e hoʻokumu ai i ka myelofibrosis?

Ke hana nei ka myelofibrosis i ka wā e loaʻa ai nā loli genetic i nā kumu kiko o kāu iwi ʻiwi. ʻAʻole kēia nā ʻano loli genetic āu e hoʻoilina mai kāu mau mākua, akā ʻo nā mutations i ulu i loko o kou ola, pinepine no nā kumu ʻaʻole mākou i maopopo loa.

ʻO ka loli genetika maʻamau loa ka mea i kapa ʻia ʻo ka gene JAK2, kahi i loaʻa ma kahi hapa o nā kānaka me ka myelofibrosis. Hiki i nā kānaka ʻē aʻe ke loaʻa nā loli i nā gene i kapa ʻia ʻo CALR a i ʻole MPL. Hoʻopili kēia mau hoʻololi gene i kāu mau cell iwi ʻōiwi e hana kūpono ʻole, e alakaʻi ana i ka mumū a ma hope aku i ka ʻiliʻili.

He mea nui e ʻike ʻaʻole pilikia ka myelofibrosis a ʻaʻole hiki iā ʻoe ke hoʻoili iā ia i nā lālā o kou ʻohana ma o ke kamaʻilio ʻana. Hoʻomohala ka hapa nui o nā hihia me ka ʻole o ke kumu maopopo a i ʻole ke kumu āu i hiki ai ke pale aku. ʻOiai ke hopohopo nei kekahi poʻe e pili ana i nā mea pili i ke kaiapuni a i ʻole nā ​​koho nohona, ʻaʻole i ʻike nā mea noiʻi i nā kumu kūwaho kūikawā no ka hapa nui o nā hihia.

I nā kūlana kakaʻikahi, hiki i nā lāʻau kanesa ma mua e pili ana i ka radiation a i ʻole kekahi mau lāʻau chemotherapy ke hoʻonui i ka pilikia o ka hoʻomohala ʻana i ka myelofibrosis ma hope o nā makahiki. Eia naʻe, ʻo kēia wale nō kahi hapa liʻiliʻi o nā hihia. ʻO ka hapa nui o nā kānaka me kēia kūlana e hoʻomohala ana me ka ʻole o ke kumu i ʻike ʻia, kahi hiki ke manaʻo luhi akā he mea maʻamau loa.

I ka wā e ʻike ai i ke kauka no ka myelofibrosis?

Pono ʻoe e hoʻokaʻaʻike i kāu kauka inā loaʻa iā ʻoe ka luhi mau ʻaʻole e hoʻomaikaʻi me ka hoʻomaha, ʻoiai inā pili pū ia me nā hōʻailona ʻē aʻe e hopohopo ai. ʻOiai hiki i kēia mau hōʻailona ke loaʻa nā kumu he nui, ʻoi aku ka maikaʻi o ka nānā ʻana iā lākou ma mua o ka hopohopo ʻana iā lākou.

Hoʻonohonoho i kahi manawa inā ʻike ʻoe i ka ʻeha ʻole maʻamau e ʻike ʻia me ka ʻole o ka hōʻeha, a i ʻole inā kahe lōʻihi nā ʻoki liʻiliʻi ma mua o ka mea i manaʻo ʻia. Hiki i kēia ke hōʻailona he haʻahaʻa kāu helu platelet ma mua o ka mea maʻamau. Pēlā nō, inā maʻi pinepine ʻoe ma mua o ka mea maʻamau a i ʻole nā ​​maʻi e noho lōʻihi, hiki paha kēia ke hōʻike i nā loli i kāu helu keʻokeʻo koko.

E hoʻolohe pono i nā loli i kou makemake aiʻole inā ua manaʻo ʻoe ua piha kou ʻōpū ma hope o ka ʻai ʻana i nā ʻāpana liʻiliʻi wale nō. Hiki i kēia manaʻo, i hui pū ʻia me ka ʻoluʻolu ʻole ma kou ʻaoʻao hema ma lalo o kou mau iwi ʻaoʻao, ke hōʻike mai i ka nui o kou spleen. Mai hoʻowahāwahā i ka hou ʻana o ka ʻili i ka pō, ka nalowale kaumaha wehe ʻole, a i ʻole nā ​​maʻi wela haʻahaʻa e hele mai ana a hele aku.

Inā loaʻa iā ʻoe ka mōʻaukala o ka polycythemia vera a i ʻole ka essential thrombocythemia, e noho mau i ka pilina me kāu hematologist. E nānā lākou iā ʻoe no nā hōʻailona e holomua ana paha kou kūlana i ka myelofibrosis. Hiki i ka ʻike mua ʻana a me ka nānā ʻana ke hoʻolilo i kahi ʻokoʻa nui i ka mālama ʻana i kou mau hōʻailona a me ka hoʻolālā ʻana i kāu mālama.

He aha nā mea pilikia no ka myelofibrosis?

Hiki i ka hoʻomaopopo ʻana i kāu mau mea pilikia ke kōkua i ka hoʻokomo ʻana i kēia kūlana i ka manaʻo, ʻoiai he mea nui e hoʻomanaʻo ʻaʻole ʻo ka loaʻa ʻana o nā mea pilikia ʻaʻole ia he manaʻo e loaʻa nō ʻoe i ka myelofibrosis. Nui nā kānaka me nā mea pilikia ʻaʻole loa e loaʻa i ke kūlana, ʻoiai ʻo nā poʻe ʻē aʻe me nā mea pilikia ʻike ʻole ʻia e loaʻa.

ʻO ka makahiki ka mea pilikia nui loa, me ka nui o nā hihia e loaʻa ana i nā kānaka ma luna o 60 mau makahiki. Eia naʻe, hiki i ka myelofibrosis ke hoʻopili i nā ʻōpio a me nā keiki i nā hihia kakaikahi. Hoʻopili like ʻia nā kāne a me nā wahine, no laila ʻaʻole pili ka wahine i kou pilikia.

Eia nā mea nui e hiki ke hoʻonui i kou pilikia:

• Makahiki ma luna o 60 mau makahiki
• Ka ʻike mua ʻana o ka polycythemia vera a i ʻole ka essential thrombocythemia
• Ka hōʻike mua ʻana i ka radiation therapy nui
• Ka mālama mua ʻana me kekahi mau lāʻau chemotherapy
• Ka hōʻike ʻana i nā kemika ʻoihana e like me ka benzene a i ʻole ka toluene

ʻO ka loaʻa ʻana o ka myeloproliferative neoplasm ʻē aʻe e hoʻonui nui i kou pilikia o ka loaʻa ʻana o ka myelofibrosis lua. Ma kahi o 10-20% o nā kānaka me ka polycythemia vera a me 5-10% o nā poʻe me ka essential thrombocythemia e loaʻa ana i ka myelofibrosis ma hope o nā makahiki he nui.

ʻO ka mālama ʻana i ka maʻi kanesa ma mua he kumu pilikia maʻamau ʻole akā he mea nui. Inā loaʻa iā ʻoe ka lāʻau lapaʻau radiation a i ʻole kekahi mau lāʻau chemotherapy i nā makahiki i hala aku nei, hiki ke kiʻekiʻe iki kou pilikia. Eia naʻe, ʻoi aku ka nui o nā pono o ka mālama ʻana i ka maʻi kanesa ma mua o kēia pilikia liʻiliʻi i hoʻonui ʻia, a ʻaʻole nui nā mea ola mai ka maʻi kanesa e loaʻa i ka myelofibrosis.

He aha nā pilikia hiki ke loaʻa i ka myelofibrosis?

ʻOiai ke manaʻo nei i nā pilikia hiki ke manaʻo nui, ʻo ka hoʻomaopopo ʻana i ka mea hiki ke kōkua iā ʻoe a me kāu hui lapaʻau e nānā i nā hōʻailona mua a lawe i nā hana pale aku i ka hiki. E hoʻomanaʻo he nui nā kānaka me ka myelofibrosis e ola no nā makahiki me ka ʻole o nā pilikia koʻikoʻi.

ʻO nā pilikia maʻamau loa e pili ana i kāu helu koko e lilo i haʻahaʻa loa a i ʻole kiʻekiʻe loa. Hiki ke loaʻa ka anemia nui ke hiki ʻole i kāu iwi kuamoʻo ke hana i nā pūnaewele koko ʻulaʻula lawa, e alakaʻi ana i ka luhi nui a me ka hanu pōkole e hoʻopilikia ana i nā hana o kēlā me kēia lā.

Eia nā pilikia a nā kauka e nānā ai:

• Anemia nui e pono ai nā transfusion koko
• Helu platelet haʻahaʻa weliweli e alakaʻi ana i ke kahe koko nui
• Hoʻonui ʻia ka pilikia o ka maʻi mai nā helu keʻokeʻo koko haʻahaʻa
• Hoʻonui nui ʻia o ka spleen e hōʻeha ana i ka ʻeha a me nā pilikia digestive
• Hypertension portal e hoʻopilikia ana i ke kahe koko ma o kou ate
• Nā clots koko ma nā wahi maʻamau ʻole
• Hoʻololi ʻana i ka leukemia ʻoi aku

Hiki i nā pilikia pili i ka spleen ke hoʻopilikia nui i kou maikaʻi o ke ola. I ka hoʻonui ʻana o kāu spleen, hiki paha ke pā i kou ʻōpū, e manaʻo ai ʻoe i ka piha koke a alakaʻi i ka nalowale kaumaha i manaʻo ʻole ʻia. I nā hihia koʻikoʻi, hiki i ka spleen nui ke hōʻeha a pono i ka mālama.

ʻO kekahi o nā pilikia koʻikoʻi akā ʻaʻole pinepine ka hoʻololi ʻana i ka leukemia ʻoi, kahi e hana ai ma kahi o 10-20% o nā kānaka me ka myelofibrosis i nā makahiki he nui. ʻOiai ke kani nui nei kēia, e nānā mau kāu kauka i kāu helu koko a e nānā i nā hōʻailona hoʻomaopopo mua. ʻAʻole nui nā kānaka me ka myelofibrosis e ʻike i kēia pilikia.

Pehea ka hōʻoia ʻana o ka myelofibrosis?

ʻO ka hōʻoia ʻana i ka myelofibrosis e komo pū ana i kekahi mau hoʻokolohua e kōkua i kāu kauka e hoʻomaopopo i nā mea e hana ana i loko o kou iwi ʻōiwi a me ke koko. Hiki ke ʻike nui ʻia ke kaʻina hana, akā hāʻawi kēlā me kēia hoʻokolohua i ka ʻike nui e alakaʻi i kāu hoʻolālā lapaʻau.

E hoʻomaka kāu kauka me ka helu koko piha, kahi e ana ai i nā ʻano like ʻole o nā sela koko i loko o kou kino. Loaʻa pinepine i nā kānaka me ka myelofibrosis nā helu koko kūpono ʻole, e like me ka liʻiliʻi o nā sela koko ʻulaʻula, nā helu sela koko keʻokeʻo maʻamau ʻole, a i ʻole nā ​​pae platelet i kiʻekiʻe a i ʻole haʻahaʻa loa.

ʻO ka biopsy iwi ʻōiwi ka hoʻokolohua koʻikoʻi loa no ka myelofibrosis. ʻOiai ke kani ʻoluʻolu ʻole kēia, e hoʻohana kāu kauka i ka lāʻau hoʻoemi ʻeha e hoʻemi i ka ʻoluʻolu ʻole. E lawe lākou i kahi laʻana liʻiliʻi o ka iwi ʻōiwi, maʻamau mai kou iwi hip, e nānā ma lalo o ka microscope no ka ʻeha a me nā sela kūpono ʻole.

Hiki i ka hoʻokolohua genetika ma kāu laʻana koko a iwi ʻōiwi ke ʻike i nā mutations kūikawā e like me JAK2, CALR, a i ʻole MPL. ʻO ka loaʻa ʻana o kēia mau loli genetika e kōkua i ka hōʻoia ʻana i ka hōʻailona a hiki ke hoʻopili i nā hoʻoholo lapaʻau. Hiki i kāu kauka ke kauoha i nā hoʻokolohua kiʻi e like me ka ultrasound a i ʻole ka CT scan e nānā i ka nui o kou spleen a me ke ate.

ʻO ka hana hōʻoia holoʻokoʻa e lawe pinepine i kekahi mau pule mai kāu hoʻokolohua koko mua a hiki i ka loaʻa ʻana o nā hopena hope loa. E wehewehe kāu hui lapaʻau i kēlā me kēia ʻanuʻu a e kōkua iā ʻoe e hoʻomaopopo i ka manaʻo o nā hopena no kāu kūlana kūikawā.

He aha ka lapaʻau no ka myelofibrosis?

ʻO ka mālama ʻana i ka myelofibrosis, ʻo ka nānā nui ʻana ia i ka hoʻomalu ʻana i kou mau hōʻailona a me ka pale ʻana i nā pilikia, ʻaʻole ka hoʻōla ʻana i ka maʻi i ka hapanui o nā hihia. E hana kou kauka i kahi papahana pilikino ma muli o kou mau hōʻailona, helu koko, makahiki, a me kou olakino holoʻokoʻa.

Inā he māmā kou mau hōʻailona a paʻa kou helu koko, hiki i kāu kauka ke ʻōlelo aku i kahi ala ʻo ka "nānā a kali" me ka nānā mau ʻana. ʻAʻole kēia manaʻo e hoʻowahāwahā i ka maʻi, akā, ʻo ka hōʻalo ʻana i nā lāʻau lapaʻau pono ʻole ke maikaʻi ʻoe a hiki ke hoʻomalu ʻia kou helu koko.

No nā poʻe me nā hōʻailona, ​​he nui nā koho mālama e kōkua iā ʻoe e ʻoluʻolu:

• Nā mea hoʻoemi JAK e hōʻemi i ka nui o ka spleen a hoʻomaikaʻi i nā hōʻailona
• Hoʻololi koko no ka anemia nui
• Nā lāʻau lapaʻau e hoʻoulu i ka hana ʻana o nā puna koko ʻulaʻula
• Nā mālama e hoʻomalu i ka spleen nui
• Kākoʻo mālama no nā hōʻailona e like me ka luhi a me ka ʻeha
• Hoʻololi ʻana i nā kumu kiko no nā mea maʻi ʻōpio i kūpono

Hiki i nā mea hoʻoemi JAK e like me ka ruxolitinib ke hōʻemi nui i ka nui o ka spleen a hoʻomaikaʻi i nā hōʻailona e like me ka luhi, ka hou ʻana o ka pō, a me ka piha koke ʻana. Hana kēia mau lāʻau lapaʻau ma ka pale ʻana i nā hōʻailona kūpono ʻole e hoʻoulu i ka mumū a me ka ʻeha i loko o kou iwi ʻiwi.

No nā mea maʻi ʻōpio a olakino, hiki i ka hoʻololi ʻana i nā kumu kiko ke hāʻawi i ka manawa kūpono e hoʻōla ai. Hoʻopili kēia i ka hoʻololi ʻana i kou iwi ʻiwi maʻi me nā kumu kiko olakino mai ka mea hāʻawi. Eia naʻe, he nui nā pilikia o kēia mālama a ʻaʻole kūpono ia no nā mea a pau, ʻoiai nā poʻe ʻelemakule a i ʻole nā ​​mea me nā kūlana olakino ʻē aʻe.

Pehea e hoʻomalu ai i ka myelofibrosis ma ka home?

ʻO ka hoʻomalu ʻana i ka myelofibrosis ma ka home, ʻo ia ka mālama ʻana i kou olakino holoʻokoʻa ʻoiai e hana pū ana me kāu hui lapaʻau. Hiki i nā koho liʻiliʻi i kēlā me kēia lā ke hoʻolilo i kahi ʻokoʻa koʻikoʻi i kāu manaʻo a kōkua i ka pale ʻana i nā pilikia.

E hoʻomaʻamaʻa i ka ʻai ʻana i nā meaʻai momona, ʻoiai inā he palupalu kou makemake. Ma muli o kou hiki ke ʻike koke i ka piha, e ho'āʻo e ʻai i nā ʻai liʻiliʻi, pinepine a puni ka lā. E hoʻokomo i nā meaʻai momona i ka protein e like me nā ʻiʻo momona ʻole, nā iʻa, nā hua, a i ʻole nā pīni e kōkua i ka mālama ʻana i kou ikaika a kākoʻo i kou ʻōnaehana pale.

E noho ikaika e like me ka hiki i loko o kou palena ikehu. Hiki i ka hoʻoikaika māmā e like me ka hele wāwae, ka ʻauʻau, a i ʻole ka yoga ke kōkua i ka hakakā ʻana i ka luhi a mālama i kou ikaika. E hoʻolohe i kou kino a hoʻomaha i ka wā e pono ai, akā e ho'āʻo e pale i ka lilo ʻana i mea noho loa ke ʻole kāu kauka e kuhikuhi.

E pale aku iā ʻoe iho mai nā maʻi ma ka holoi pinepine ʻana i kou mau lima a pale aku i nā wahi piha i ka wā o ka wā anu. E kiʻi i nā lāʻau lapaʻau i kuhikuhi ʻia, akā e nīnau mua i kāu kauka ma muli o ka hiki ʻole ke kūpono kekahi mau lāʻau lapaʻau ma muli o kāu mālama ʻana. E makaʻala i nā ʻoki a me nā ʻili ʻili, e mālama pono iā lākou a uhi ʻia a hiki i ka ho'ōla.

E hoʻokele i kou ikehu i ka lā ma o ka hoʻonohonoho ʻana i nā hana koʻikoʻi a noi aku i ke kōkua i ka wā e pono ai. Loaʻa i ka poʻe he nui ka mea kōkua e hana i nā hana koi i ka wā e ʻike ai lākou i ka ikaika loa, pinepine i ke kakahiaka. Mai kānalua e hoʻololi i kāu papa hana a hāʻawi i nā kuleana i nā lālā ʻohana a i ʻole nā ​​hoaaloha.

Pehea ʻoe e hoʻomākaukau ai no kāu hālāwai me ke kauka?

Hiki i ka hoʻomākaukau ʻana no kāu mau hālāwai me ke kauka ke kōkua iā ʻoe e loaʻa ka mea nui loa mai kāu mau kipa a hōʻoia ʻaʻole ʻoe e poina i nā nīnau a i ʻole nā ​​manaʻo koʻikoʻi. Hiki i ka hoʻomākaukau iki ke hana i kēia mau hālāwai i ʻoi aku ka hua a emi iho ka kaumaha.

E mālama i kahi moʻolelo hōʻailona ma waena o nā hālāwai, e hoʻomaopopo ana i kou mau pae ikehu, nā hōʻailona hou, a pehea ʻoe e pane ai i nā lāʻau lapaʻau. E hoʻokomo i nā kikoʻī e pili ana i kou makemake, ka maikaʻi o ka hiamoe, a me nā hana i lilo i mea paʻakikī. Kōkua kēia ʻike i kāu kauka e hoʻomaopopo pehea ka hopena o ke kūlana i kou ola i kēlā me kēia lā.

E kākau i kāu mau nīnau ma mua o ka hana ʻana, i ʻole e poina iā lākou i ka wā o ka kipa. ʻO nā nīnau maʻamau paha e pili ana i ka nīnau ʻana e pili ana i kāu mau hopena hoʻokolohua koko hou loa, ke kūkākūkā nei i nā hōʻailona hou, a i ʻole ke hoʻomaopopo ʻana i ka mea e manaʻo ai i nā mahina e hiki mai ana. Mai hopohopo e nīnau i nā nīnau he nui - makemake kāu hui lapaʻau e kōkua iā ʻoe e hoʻomaopopo i kou kūlana.

E lawe mai i ka papa inoa piha o nā lāʻau lapaʻau, nā mea hoʻohui, a me nā wikamina āu e lawe nei, me nā nui a me ka pinepine o kāu lawe ʻana. Kōkua kēia e pale aku i nā pilina lāʻau a hōʻoia i ka hana pū ʻana o kāu mau lāʻau lapaʻau. E noʻonoʻo e lawe mai i kahi lālā ʻohana a hoaaloha paha e kōkua iā ʻoe e hoʻomanaʻo i ka ʻike nui i kūkākūkā ʻia i ka wā o ka hana ʻana.

E hoʻomākaukau no nā hoʻokolohua koko ma ka noho ʻana i ka wai a me ke komo ʻana i ka pālule me nā lima hiki ke ʻōwili maʻalahi. Inā ʻoe e hopohopo pinepine no nā nila, e haʻi aku i kāu hui lapaʻau - hiki iā lākou ke kōkua i ka hana ʻana i ka ʻike hou aku no ʻoe.

He aha ka mea nui e lawe aku ai e pili ana i ka myelofibrosis?

He kūlana koʻikoʻi ka myelofibrosis, akā he mea nui e hoʻomanaʻo he nui nā kānaka e noho pū me ia no nā makahiki ʻoiai e mālama ana i ka maikaʻi o ke ola. ʻOiai ʻaʻole hiki ke hoʻōla ʻia i ka hapanui o nā hihia, hiki i nā lāʻau lapaʻau maikaʻi ke kōkua i ka hoʻokele ʻana i nā hōʻailona a pale aku i nā pilikia.

Aia kāu wānana ma nā mea he nui, me kou mau makahiki, ke olakino holoʻokoʻa, nā loli genetic kūikawā, a me ka maikaʻi o kou pane ʻana i ka lāʻau lapaʻau. Loaʻa i kekahi poʻe kahi ʻano lohi e pono ai ka lāʻau lapaʻau liʻiliʻi, ʻoiai ʻo nā poʻe ʻē aʻe e pono ai ka hoʻokele ikaika. E kōkua kāu hui lapaʻau iā ʻoe e hoʻomaopopo i ka mea e manaʻo ai ma muli o kou kūlana pilikino.

ʻO ka mea nui loa āu e hiki ai ke hana, ʻo ia ka mālama ʻana i ka kamaʻilio ākea me kāu hui mālama ola a hahai mau i ka manawa maʻamau ʻoiai ʻoe e ʻoluʻolu ana. Hiki i ka ʻike mua ʻana a me ka hoʻokele ʻana i nā pilikia ke hana i kahi ʻokoʻa nui i kou nānā lōʻihi.

E hoʻomanaʻo ʻia e mau ana ka noiʻi ʻana i ka myelofibrosis, me nā lāʻau hou e hoʻomohala ʻia ana a hoʻokolohua mau ʻia. Hiki i nā hoʻokolohua lapaʻau ke hāʻawi i ka komo ʻana i nā lāʻau lapaʻau hou e manaʻo ʻia ana, a hiki i kāu kauka ke kōkua iā ʻoe e hoʻomaopopo inā kūpono kekahi mau noiʻi noiʻi no kou kūlana.

Nā nīnau pinepine e pili ana i ka myelofibrosis

He ʻano kanesa anei ka myelofibrosis?

ʻAe, manaʻo ʻia ka myelofibrosis he ʻano kanesa koko, ʻo ia hoʻi ka myeloproliferative neoplasm. Eia naʻe, ʻokoʻa kona ʻano mai nā kanesa ʻē aʻe he nui no ka mea e holomua mālie ia ma nā makahiki ma mua o nā mahina. Nui nā kānaka me ka myelofibrosis e ola no nā makahiki he nui me ka maikaʻi o ke ola, ʻoi aku hoʻi me ka mālama kūpono a me ka nānā.

Hiki ke hoʻoilina ʻia ka myelofibrosis?

ʻAʻole hoʻoilina ʻia ka myelofibrosis mai kou mau mākua. ʻO nā loli genetic e hoʻokumu ai i kēia kūlana e ulu mau ana i loko o kou ola ma mua o ka hoʻoili ʻia ʻana ma waena o nā ʻohana. ʻOiai ua hōʻike ʻia nā hihia ʻohana maʻamau loa, ʻo ka hapa nui o nā kānaka me ka myelofibrosis ʻaʻohe lākou mau ʻohana me ka maʻi like, a ʻaʻole hiki iā ʻoe ke hoʻoili iā ia i kāu mau keiki.

Pehea ka lōʻihi e hiki ai i kekahi ke ola me ka myelofibrosis?

ʻOkoʻa loa ka manaʻo no ka myelofibrosis mai ke kanaka a i ke kanaka. Ola kekahi poʻe no nā makahiki he nui me nā hōʻailona iki, ʻoiai kekahi poʻe e ʻike i ka holomua wikiwiki. E loiloi kāu kauka i kāu mau kumu pilikia pilikino a kōkua iā ʻoe e hoʻomaopopo i kāu wānana kūikawā. Hoʻopili nā mea e like me ka makahiki, ka helu koko, nā loli genetic, a me ke olakino holoʻokoʻa i kāu manaʻo.

E pono anei iaʻu nā transfusion koko mau?

ʻAʻole pono nā kānaka a pau me ka myelofibrosis i nā transfusion koko. Ke hilinaʻi nei inā pono ʻoe iā lākou i ka nui o ka hopena o ke kūlana i kāu hana ʻana i nā cell koko ʻulaʻula. ʻAʻohe pono o kekahi poʻe i nā transfusion, ʻoiai e pono paha i kekahi iā lākou i kekahi manawa a i ʻole pinepine inā lilo ko lākou anemia i mea nui. E nānā kāu hui lapaʻau i kāu helu koko a kūkākūkā i nā transfusion inā pono lākou.

Hiki i nā loli o ke ola ke kōkua i ka mālama ʻana i ka myelofibrosis?

ʻOiai ʻaʻole hiki i nā loli o ke ola ke hoʻōla i ka myelofibrosis, hiki iā lākou ke kōkua iā ʻoe e ʻoluʻolu a hiki ke hoʻemi i kekahi mau pilikia. ʻO ka ʻai ʻana i ka ʻai kaulike, ka noho ʻana i ka hana kūpono, ka loaʻa ʻana o ka hoʻomaha lawa, a me ka pale ʻana i nā maʻi hiki ke kōkua a pau i kou olakino maikaʻi. Eia naʻe, ʻo ka mālama lapaʻau ka mea nui loa i ka mālama ʻana i kēia kūlana, no laila pono e hoʻohui nā loli o ke ola ma mua o ka pani ʻana i kāu mau lāʻau lapaʻau i kuhikuhi ʻia.