He aha ka Myelodysplastic Syndrome? Nā Hōʻailona, Nā Kumu, a me ka Lapaʻau

ʻO ka myelodysplastic syndrome (MDS) kahi hui o nā maʻi koko kahi e hana ʻole ai kou iwi ʻōiwi i nā hunaola koko olakino maikaʻi. E noʻonoʻo i kou iwi ʻōiwi e like me ka hale hana e hana pono ai i nā hunaola koko ʻulaʻula maʻamau, nā hunaola koko keʻokeʻo, a me nā platelets, akā i ka MDS, hoʻomaka kēia hale hana e hana i nā hunaola e nānā ʻole a hana ʻole maikaʻi.

Hoʻopili nui kēia kūlana i nā poʻe ʻelemakule, me ka nui o nā kānaka i ʻike ʻia ma hope o 65 mau makahiki. ʻOiai hiki i ka MDS ke manaʻo nui i ka wā mua āu e lohe ai, hiki i ka hoʻomaopopo ʻana i ka mea e hana nei i kou kino ke kōkua iā ʻoe e hana pū me kāu hui olakino e hoʻokele pono.

He aha ka Myelodysplastic Syndrome?

Hana ʻia ka myelodysplastic syndrome i ka wā e hōʻino ʻia ai nā hunaola kumu i kou iwi ʻōiwi a ʻaʻole hiki ke ulu i nā hunaola koko makua olakino. Ma kahi o ka hana ʻana i nā hunaola maʻamau, hana kou iwi ʻōiwi i nā hunaola koko i ʻano ʻole, hana ʻole pono, a pinepine e make ma mua o ka hiki ʻana i kā lākou hana i kou kino.

ʻO kēia ka mea e alakaʻi ai i nā helu koko haʻahaʻa, ka mea a nā kauka i kapa ai ʻo cytopenias. ʻAʻole paha ʻoe i loaʻa nā hunaola koko ʻulaʻula lawa (anemia), nā hunaola koko keʻokeʻo (neutropenia), a i ʻole nā platelets (thrombocytopenia). Hiki i kēlā me kēia o kēia mau nele ke hana i nā hōʻailona a me nā pilikia olakino like ʻole.

Ua kapa ʻia kekahi manawa ka MDS he kūlana "preleukemic" no ka mea hiki ke ulu i ka leukemia nui i kekahi poʻe. Eia naʻe, nui nā kānaka me ka MDS ʻaʻole loa e loaʻa ka leukemia a hiki ke ola no nā makahiki me ka hoʻokele a me ka lapaʻau kūpono.

He aha nā Hōʻailona o ka Myelodysplastic Syndrome?

Hoʻomohala mālie nā hōʻailona o ka MDS a pili pololei i ka loaʻa ʻana o nā helu koko haʻahaʻa. Nui nā kānaka ʻaʻole i ʻike i nā hōʻailona koke, a ʻike ʻia kekahi manawa ke kūlana i nā hoʻokolohua koko maʻamau no nā kumu ʻē aʻe.

Eia nā hōʻailona maʻamau āu e ʻike ai:

• Luhi mau a nāwaliwali ʻaʻole e hoʻomaikaʻi me ka hoʻomaha
• Pōkole o ka hanu i nā hana maʻamau a i ʻole i ka wā e moe ana
• ʻIli palupalu, ʻike nui ʻia i kou maka, nā maka o loko, a i ʻole nā moena kui
• ʻUlaʻula maʻalahi mai nā kīkī liʻiliʻi a i ʻole nā hōʻeha
• Ke kahe koko maʻamau ʻole, e like me ka ihu kahe, kahe koko gums, a i ʻole nā manawa menstrual kaumaha
• Nā maʻi pinepine e lōʻihi ma mua o ka maʻamau e hoʻōla
• Nāwaliwali a i ʻole nā mālamalama i ka wā e kū ana
• Nā palpitations naʻau a i ʻole ka naʻau wikiwiki

ʻIke kekahi poʻe i nā hōʻailona liʻiliʻi e like me ka ʻeha iwi, ka nalowale o ka makemake, a i ʻole ka nalowale kaumaha manaʻo ʻole. Inā ʻoe e ʻike ana i kekahi mau hōʻailona o kēia mau mea e mau ana no nā hebedoma, pono ke kūkākūkā me kāu kauka, ʻoiai hiki ke hana ʻia lākou e nā kūlana ʻē aʻe.

He aha nā ʻAno o ka Myelodysplastic Syndrome?

Hoʻokaʻawale nā kauka i ka MDS i nā ʻano he nui ma muli o ke ʻano o nā hunaola ʻano ʻole ma lalo o ka microscope a me nā laina hunaola koko i hoʻopilikia ʻia. ʻO ka ʻōnaehana o ka World Health Organization (WHO) ka mea i hoʻohana nui ʻia.

ʻO nā ʻano nui e komo pū ana me ka MDS me ka dysplasia lineage hoʻokahi (e hoʻopilikia ana i hoʻokahi ʻano o ka hunaola koko), MDS me ka multilineage dysplasia (e hoʻopilikia ana i nā ʻano hunaola he nui), a me ka MDS me nā blasts nui (loaʻa nā hunaola ʻōpio nui loa). Aia nō hoʻi ka MDS me ka chromosome 5q deletion hoʻokahi, ka mea he loli genetic kūikawā a pane maikaʻi pinepine i kekahi mau lapaʻau.

E hoʻoholo pū kāu kauka i kou pae pilikia ma ka hoʻohana ʻana i nā ʻōnaehana helu e kōkua i ka wānana ʻana i ke ʻano o ka maʻi e holomua ai. Kōkua kēia ʻike i ka alakaʻi ʻana i nā hoʻoholo lapaʻau a hāʻawi iā ʻoe i ka hoʻomaopopo maikaʻi aʻe i ka mea e manaʻo ai e hele mai.

He aha nā Kumu o ka Myelodysplastic Syndrome?

I ka hapanui o nā hihia, ʻaʻole hiki i nā kauka ke kuhikuhi pololei i ka mea e hana ai i ka MDS. Ua kapa ʻia kēia he MDS mua a i ʻole de novo, a me he mea lā e hana ia i ka wā e hana ai nā loli genetic i nā hunaola kumu iwi ʻōiwi i ka manawa, pinepine e like me kahi ʻāpana o ke kaʻina hana ʻelemakule maʻamau.

Eia naʻe, nui nā mea e hoʻonui ai i kou pilikia o ka loaʻa ʻana o ka MDS:

• Ka lapaʻau kanesa ma mua me ka chemotherapy a i ʻole ka radiation therapy
• Ka hōʻike ʻia ʻana i nā kemika e like me ka benzene a i ʻole formaldehyde
• Ka puhipaka nui no nā makahiki he nui
• Nā maʻi genetic kūikawā i hānau ʻia mai ka hānau ʻana
• Nā maʻi koko ma mua a i ʻole nā maʻi iwi ʻōiwi

I ka wā e ulu ai ka MDS ma hope o ka lapaʻau kanesa, ua kapa ʻia ʻo ia he lapaʻau-pili a i ʻole MDS lua. Hana pinepine kēia i nā makahiki he nui ma hope o ka lapaʻau a ʻoi aku ka ikaika ma mua o ka MDS mua. ʻO ka lono maikaʻi, ʻaʻole loa e loaʻa i ka hapanui o nā kānaka e loaʻa ana i ka lapaʻau kanesa ka MDS.

ʻO ka makahiki ka mea pilikia nui loa, me ka awelika makahiki o ka ʻike ʻana ma kahi o 70 mau makahiki. ʻOi aku ka nui o nā kāne e loaʻa i ka MDS ma mua o nā wāhine, ʻoiai ʻaʻole nui ka ʻokoʻa.

I ka wā e ʻIke ai i ke Kauka no ka Myelodysplastic Syndrome?

Pono ʻoe e hoʻonohonoho i kahi hālāwai me kāu kauka inā ʻoe e ʻike ana i ka luhi mau, nāwaliwali, a i ʻole ka pōkole o ka hanu e hoʻopilikia ana i kāu mau hana i kēlā me kēia lā. Hiki i kēia mau hōʻailona ke hōʻike i nā helu hunaola koko ʻulaʻula haʻahaʻa, ka mea e pono ai ka loiloi lapaʻau.

E ʻimi koke i ka mālama lapaʻau inā ʻoe e ʻike i ke kahe koko a i ʻole ka ʻulaʻula maʻamau ʻole, nā maʻi pinepine, a i ʻole inā ʻoe e manaʻo luhi a māmā pinepine. ʻOiai hiki i kēia mau hōʻailona ke loaʻa nā kumu he nui, pono lākou i ka noiʻi e kāpae i nā maʻi koko e like me ka MDS.

Inā loaʻa iā ʻoe ka mōʻaukala o ka lapaʻau kanesa, he mea nui loa ke hōʻike i nā hōʻailona hou a i ʻole mau i kāu hui olakino. ʻIke lākou i kāu mōʻaukala lapaʻau a hiki ke hoʻoholo inā pono ke hoʻokolohua hou aku.

He aha nā Mea Pilikia no ka Myelodysplastic Syndrome?

Hiki i ka hoʻomaopopo ʻana i nā mea pilikia ke kōkua iā ʻoe e loaʻa nā kūkākūkā ʻike me kāu kauka, ʻoiai ʻaʻole ʻo ka loaʻa ʻana o nā mea pilikia e ʻōlelo ai e loaʻa maoli iā ʻoe ka MDS. Ke noho nei ka makahiki he mea pilikia nui loa, me ka maʻi maʻamau loa i nā kānaka ma lalo o 50.

ʻO nā mea pilikia nui e komo pū ana:

• Makahiki holomua, ʻoi aku ka nui ma mua o 65 mau makahiki
• Kāne kāne (pilikia iki ma mua o nā wahine)
• Ka lapaʻau ma mua me nā mea hana alkylating a i ʻole nā mea hoʻopili topoisomerase II
• Ka hōʻike radiation mai nā lapaʻau lapaʻau a i ʻole nā kumu hana
• Ka puhipaka, hiki ke hōʻino i nā hunaola iwi ʻōiwi i ka manawa
• Nā syndromes genetic hoʻoilina e like me ka Fanconi anemia
• Mōʻaukala ʻohana o nā kanesa koko a i ʻole MDS

ʻAʻole ʻo ka loaʻa ʻana o hoʻokahi a ʻoi aku paha nā mea pilikia e ʻōlelo ai e loaʻa iā ʻoe ka MDS. Nui nā kānaka me nā mea pilikia he nui ʻaʻole loa e loaʻa i ke kūlana, ʻoiai kekahi poʻe me nā mea pilikia ʻike ʻole e hana.

He aha nā Pilikia Hiki o ka Myelodysplastic Syndrome?

Hiki i ka MDS ke alakaʻi i nā pilikia he nui, ma muli o ka hana ʻole ʻana o kou iwi ʻōiwi i nā hunaola koko olakino lawa. Ke hoʻomaopopo nei i kēia mau pilikia hiki ke kōkua iā ʻoe e ʻike i nā hōʻailona e nānā ai a i ka wā e ʻimi ai i ka mālama lapaʻau.

ʻO nā pilikia maʻamau e komo pū ana:

• Anemia nui e pono ai nā transfusion koko
• Nā maʻi koʻikoʻi ma muli o nā helu hunaola koko keʻokeʻo haʻahaʻa
• Ke kahe koko weliweli mai nā helu platelet haʻahaʻa
• Ka nui o ka hao mai nā transfusion koko pinepine
• Nā pilikia naʻau mai ka anemia nui
• Ka holomua i ka acute myeloid leukemia (AML)

Ma kahi o 30% o nā kānaka me ka MDS e loaʻa ana i ka leukemia nui, ʻoiai kēia e ʻokoʻa nui ana ma muli o kāu ʻano MDS a me nā mea pilikia. Hiki i kāu kauka ke hāʻawi iā ʻoe i ka loiloi pilikino hou aku o kāu pilikia ma muli o kāu kūlana pilikino.

Hiki i ka nui o ka hao ke lilo i mea hopohopo inā pono ʻoe i nā transfusion koko pinepine. Hiki i ka hao nui ke hōʻino i kou naʻau, ate, a me nā ʻāpana kino ʻē aʻe i ka manawa, akā hiki ke hoʻokele ʻia kēia me nā lāʻau lapaʻau i kapa ʻia ʻo iron chelators inā pono.

Pehea ka ʻIke ʻia ʻana o ka Myelodysplastic Syndrome?

Pono ka ʻike ʻana i ka MDS i nā hoʻokolohua he nui no ka mea hiki i nā hōʻailona ke like me nā maʻi koko ʻē aʻe a i ʻole nā kūlana maʻamau e like me ka anemia nele hao. E hoʻomaka kāu kauka me ka helu koko piha (CBC) e nānā i kou mau hunaola koko ʻulaʻula, nā hunaola koko keʻokeʻo, a me nā platelets.

Inā ʻano ʻole kou mau helu koko, ʻo ka hana aʻe ka biopsy iwi ʻōiwi. I loko o kēia kaʻina hana, e wehe kāu kauka i kahi ʻāpana liʻiliʻi o ka iwi ʻōiwi, maʻamau mai kou iwi hip, e nānā i nā hunaola ma lalo o ka microscope. Hōʻike kēia inā hana kou iwi ʻōiwi i nā hunaola ʻano ʻole i ʻano o ka MDS.

Hiki i nā hoʻokolohua hou ke komo pū me ka cytogenetic analysis e nānā i nā loli chromosome, ka flow cytometry e kālailai i nā ʻano hunaola, a me ka hoʻokolohua molecular no nā mutations genetic kūikawā. Kōkua kēia mau hoʻokolohua e hoʻoholo i kāu ʻano MDS a alakaʻi i nā hoʻoholo lapaʻau.

He aha ka Lapaʻau no ka Myelodysplastic Syndrome?

ʻO ka lapaʻau no ka MDS e hilinaʻi ana i nā mea he nui, e komo pū ana me kou makahiki, olakino holoʻokoʻa, ke ʻano MDS āu i loaʻa ai, a me kou pae pilikia. ʻO ka pahuhopu ke hoʻomaikaʻi i kou mau helu koko, hoʻemi i nā hōʻailona, a hoʻolohi i ka holomua o ka maʻi.

Hiki i nā koho lapaʻau ke komo pū me:

• Ka mālama kākoʻo me nā transfusion koko a me nā lāʻau lapaʻau e pale aku i nā maʻi
• Nā mea hana hypomethylating e like me ka azacitidine a i ʻole decitabine
• Lenalidomide, kūpono loa no kekahi mau ʻano genetic
• Ka hoʻololi hunaola kumu no nā poʻe ʻōpio, olakino
• Ka lapaʻau chelation hao inā ulu ka nui o ka hao
• Nā mea ulu e hoʻoulu i ka hana ʻana o nā hunaola koko

Nui nā kānaka e hoʻomaka me ka mālama kākoʻo, ka mea e kaulele ana i ka hoʻokele ʻana i nā hōʻailona a me ka pale ʻana i nā pilikia. Hiki paha kēia ke komo pū me nā transfusion koko maʻamau, nā antibiotics e pale aku i nā maʻi, a i ʻole nā lāʻau lapaʻau e hoʻonui i kou mau helu koko.

No kekahi poʻe, ʻoi aku hoʻi nā poʻe me ka MDS kiʻekiʻe, hiki i nā lapaʻau ikaika hou aku e like me nā mea hana hypomethylating ke kōkua i ka hoʻomaikaʻi ʻana i nā helu koko a me ke ola maikaʻi. Hāʻawi ka hoʻololi hunaola kumu i ka manawa maikaʻi loa no ka hoʻōla akā mālama ʻia ia no nā poʻe ʻōpio e hiki ke ʻae i ke kaʻina hana ikaika.

Pehea ka Lapaʻau Home i ka wā o ka Myelodysplastic Syndrome?

ʻO ka hoʻokele ʻana i ka MDS ma ka home e komo pū ana me ka lawe ʻana i nā hana e pale aku ai iā ʻoe mai nā maʻi, pale aku i nā hōʻeha e hiki ke hana i ke kahe koko, a mālama i kou olakino holoʻokoʻa. E hāʻawi kāu hui olakino iā ʻoe i nā kuhikuhi kūikawā ma muli o kāu mau helu koko a me ka hoʻolālā lapaʻau.

Eia nā hana mālama home nui:

• E holoi pinepine i kou mau lima a pale aku i nā kānaka maʻi
• E hoʻohana i kahi pulupulu palupalu a pale aku i ka flossing inā haʻahaʻa kou helu platelet
• E komo i nā mīkina lima i ka wā e māla ai a i ʻole e hoʻomaʻemaʻe
• Pale aku i nā haʻuki hoʻopili a i ʻole nā hana me ka pilikia hōʻeha kiʻekiʻe
• E ʻai i kahi meaʻai kaulike me ka nui o ka protein e kākoʻo i kou ʻōnaehana pale
• E loaʻa ka hoʻomaha lawa a hoʻokele i ke kaumaha
• E lawe i nā lāʻau lapaʻau e like me ka mea i kuhikuhi ʻia

E mālama i kahi thermometer a nānā i kou mahana inā ʻoe e manaʻo maikaʻi ʻole. Pono ka mahana ma luna o 100.4°F (38°C) i ka mālama lapaʻau koke i ka wā e loaʻa ai iā ʻoe nā helu hunaola koko keʻokeʻo haʻahaʻa. Pēlā nō, pono ke kelepona aku i kāu hui olakino i kekahi kahe koko maʻamau ʻole a i ʻole ka luhi nui.

Pehea ʻoe e Hoʻomākaukau ai no kāu Hālāwai Kauka?

Hiki i ka hoʻomākaukau ʻana no kāu mau hālāwai ke kōkua iā ʻoe e hana i ka hapa nui o kou manawa me kāu hui olakino a hōʻoia iā ʻoe e loaʻa ka ʻike āu e pono ai. E hoʻomaka ma ka kākau ʻana i kou mau hōʻailona, ​​e komo pū ana i ka wā i hoʻomaka ai lākou a pehea lākou e hoʻopilikia ai i kou ola i kēlā me kēia lā.

E lawe mai i ka papa inoa piha o nā lāʻau lapaʻau, nā mea hoʻohui, a me nā huaora āu e lawe nei. E komo pū me nā lāʻau lapaʻau over-the-counter, no ka mea hiki i kekahi ke hoʻopilikia i kou mau helu koko a i ʻole ka launa pū ʻana me nā lapaʻau MDS. E ʻohi pū i ka ʻike e pili ana i kāu mōʻaukala lapaʻau, e komo pū ana i nā lapaʻau kanesa ma mua a i ʻole ka hōʻike ʻia ʻana i nā kemika.

E hoʻomākaukau i nā nīnau ma mua a e noʻonoʻo e lawe mai i kahi lālā ʻohana a i ʻole hoaaloha e kōkua iā ʻoe e hoʻomanaʻo i nā ʻike nui. E nīnau e pili ana i kāu ʻano MDS, nā koho lapaʻau, nā hopena ʻaoʻao i manaʻo ʻia, a me ka mea e manaʻo ai e hele mai. Mai kānalua e noi i ka wehewehe inā ʻaʻole ʻoe i hoʻomaopopo i kahi mea.

He aha ka Mea Nui e pili ana i ka Myelodysplastic Syndrome?

ʻO ka MDS kahi kūlana hiki ke hoʻokele ʻia, ʻoiai hiki ke manaʻo nui i ka wā mua. Nui nā kānaka e ola no nā makahiki me ke ola maikaʻi ma o ka lapaʻau kūpono a me ka mālama kākoʻo. ʻO ke kī ka hana pili loa me kāu hui olakino e nānā i kou kūlana a hoʻoponopono i nā lapaʻau e like me ka mea e pono ai.

E hoʻomanaʻo e hoʻopilikia ka MDS i nā kānaka āpau i nā ʻano like ʻole. Hiki i kou ʻike ke ʻokoʻa loa mai kekahi, ʻoiai inā loaʻa iā ʻoe ka ʻano like. E kaulele i ka lawe ʻana i nā mea i hoʻokahi lā i ka manawa a mai kānalua e noi i ke kākoʻo mai kāu hui olakino, ʻohana, a me nā hoaaloha.

Ke noho nei ka ʻike e pili ana i kou kūlana ke kōkua iā ʻoe e hana i nā hoʻoholo maikaʻi e pili ana i kāu mālama, akā e ho'āʻo mai e hoʻonui ʻia e ka ʻike. E hilinaʻi i kāu hui olakino e alakaʻi iā ʻoe ma ke kaʻina hana a e hoʻomanaʻo e hoʻomau ka hoʻomaikaʻi ʻana i nā lapaʻau no ka MDS, e hāʻawi ana i ka manaʻolana no nā hopena maikaʻi aʻe i ka wā e hiki mai ana.

Nā Nīnau Pinepine e pili ana i ka Myelodysplastic Syndrome

Q1. ʻO ka myelodysplastic syndrome anei ka leukemia?

ʻAʻole like ka MDS me ka leukemia, ʻoiai he mau kūlana pili lāua. ʻO ka MDS kahi maʻi kahi e hana ai kou iwi ʻōiwi i nā hunaola koko ʻano ʻole ʻaʻole e hana pono. ʻO ka leukemia e komo pū ana i nā hunaola kanesa e hoʻonui wikiwiki a hoʻopiha i nā hunaola koko maʻamau. Eia naʻe, ma kahi o 30% o nā kānaka me ka MDS e loaʻa paha i ka leukemia nui, ʻo ia ke kumu e nānā pono ai nā kauka i nā mea maʻi.

Q2. Pehea ka lōʻihi e hiki ai i kekahi ke ola me ka myelodysplastic syndrome?

ʻO ka lōʻihi o ke ola me ka MDS e ʻokoʻa nui ana ma muli o kou makahiki, olakino holoʻokoʻa, a me ke ʻano a me ka pae pilikia o kāu MDS. Nui nā kānaka e ola no nā makahiki he nui me ke kūlana, ʻoiai kekahi poʻe e loaʻa paha i kahi papa hana ikaika. Hiki i kāu kauka ke hāʻawi iā ʻoe i kahi manaʻo pilikino hou aku ma muli o kāu kūlana kūikawā a me ka pane i ka lapaʻau.

Q3. Hiki ke hoʻōla ʻia ka myelodysplastic syndrome?

I kēia manawa, ʻo ka hoʻololi hunaola kumu wale nō ka lapaʻau e hāʻawi ana i ka hiki ke hoʻōla, akā ʻaʻole kūpono ia no nā kānaka āpau ma muli o ka makahiki a me nā manaʻo olakino. No nā kānaka he nui, mālama ʻia ka MDS e like me kahi kūlana maʻi maʻi hiki ke hoʻokele ʻia me nā ʻano lapaʻau e hoʻomaikaʻi i ke ola maikaʻi a hoʻolohi i ka holomua.

Q4. Pono anei iaʻu nā transfusion koko me ka MDS?

Nui nā kānaka me ka MDS e pono ai nā transfusion koko, ʻoi aku hoʻi nā transfusion hunaola koko ʻulaʻula no ka anemia. ʻO ka pinepine e hilinaʻi ana i kāu mau helu koko a me nā hōʻailona. Pono kekahi poʻe i nā transfusion i kēlā me kēia pule, ʻoiai kekahi poʻe e pono paha iā lākou i ka manawa liʻiliʻi a i ʻole ʻaʻole loa, ʻoi aku inā ke kōkua nei nā lapaʻau ʻē aʻe e mālama i kā lākou mau helu koko.

Q5. Hiki i ka meaʻai a i ʻole nā loli nohona ke kōkua me ka MDS?

ʻOiai ʻaʻole hiki i nā loli meaʻai a me nā nohona ke hoʻōla i ka MDS, hiki iā lākou ke kōkua iā ʻoe e manaʻo maikaʻi a hoʻemi i kou pilikia o nā pilikia. ʻO ka ʻai ʻana i kahi meaʻai kaulike i waiwai i ka protein e kākoʻo i kou ʻōnaehana pale, ke noho wai e kōkua i ka luhi, a me ka pale ʻana i nā kānaka maʻi e hoʻemi i ka pilikia maʻi. Hiki i ka hoʻoikaika māmā maʻamau, i ka wā āu e manaʻo ai, ke kōkua pū i ka mālama ʻana i kou ikaika a me kou manaʻo.