ʻAʻole anei e hana pono ana kou mau hunaola koko? E aʻo kākou e pili ana i ka Myelodysplastic Syndrome (MDS)!

Ke luhi nei ʻoe a luhi mau i nā manawa a pau? Ke paʻakikī nei ʻoe i kekahi manawa ke hanu ma hope o ka hana ʻana i kahi hana liʻiliʻi? A i ʻole ʻike ʻoe i nā palapū a me ke koko ma nā wahi a pau o kou kino? ʻOiai ke manaʻo nei ʻoe he mau mea maʻamau kēia, i kekahi manawa aia paha ke kumu ma hope o kēia e pono ai ʻoe e hopohopo iki. I kēia lā e kamaʻilio mākou e pili ana i kekahi o ia ʻano maʻi, ʻo ia ka myelodysplastic syndrome.

He aha ka myelodysplastic syndrome (MDS)?

I kēia manawa, e nānā kākou i ke ʻano o kēia Myelodysplastic Syndrome (MDS). Ua kapa ʻia hoʻi e kekahi poʻe ʻo Myelodysplasia. ʻO ka mea hou loa, ua kapa ʻia hoʻi ʻo Myelodysplastic Neoplasm. I ka ʻōlelo maʻalahi, he ʻano maʻi kanesa ia. Akā ʻo ka mea e hana ʻia ma kēia, ʻo nā pūnaewele kumu e hana ana i ke koko i loko o ko mākou kino - ke kapa nei mākou iā lākou (nā pūnaewele kumu hematopoietic) - ʻaʻole lākou e oʻo pono, ʻo ia hoʻi, ʻaʻole lākou e ulu pono. Aia kēia mau pūnaewele i loko o ko mākou iwi iwi. No laila hoʻomaka ka pilikia ke ulu pono ʻole kēia mau pūnaewele kumu a lilo i mau pūnaewele koko ʻulaʻula olakino, nā pūnaewele koko keʻokeʻo, a me nā platelets.

Ke ʻole lawa nā hunaola koko olakino o kou kino, hiki iā ʻoe ke hoʻomohala i nā maʻi koʻikoʻi e like me ka anemia. Hiki iā ʻoe ke loaʻa pinepine i nā maʻi a kahe pinepine ke koko. I kekahi poʻe, hiki i ka MDS ke lilo i mea ʻino a lilo i maʻi kanesa i kapa ʻia ʻo acute myeloid leukemia (AML) .

He mea kākaʻikahi loa kēia ʻano maʻi, i kapa ʻia ʻo MDS. Ma ʻAmelika Hui Pū ʻIa, hoʻopilikia ia i kahi o ʻehā mau kānaka i kēlā me kēia 100,000 mau kānaka i kēlā me kēia makahiki. Inā ʻike ʻia ʻoe me MDS, e hoʻāʻo kāu mau kauka e hoʻolohi i ka holomua o ka maʻi, e kāohi i kāu mau hōʻailona, ​​a e mālama i nā pilikia e kū mai ana.

He aha nā ʻano MDS i loaʻa?

Hoʻokaʻawale nā ​​kauka i kēia maʻi MDS i kekahi mau ʻano. Nānā lākou i nā hopena o kekahi mau hoʻokolohua. E nānā kākou i nā mea e nānā ai kēlā mau hoʻokolohua:

• Nā hunaola koko ʻulaʻula a keʻokeʻo olakino a me ka helu platelet: Ke haʻahaʻa kou mau hunaola koko ʻulaʻula, kapa mākou ia he anemia. Manaʻo paha ʻoe ua luhi loa a pōkole ka hanu.
• Nā huna koko ʻōpiopio, a i ʻole nā ​​pahū: Ua like kēia mau pahū me nā huna koko ʻōpiopio. Lawe lākou i kahi nui loa i loko o ka iwi iwi, e paʻakikī ai ke kūkulu ʻia ʻana o nā huna koko olakino. Inā ʻaʻole lawa kāu mau huna koko keʻokeʻo olakino, hiki iā ʻoe ke loaʻa pinepine i nā maʻi. A inā ʻaʻole lawa kāu mau platelet olakino, hiki ke paʻakikī ke hoʻōki i ke kahe ʻana o ke koko.
• Nā ʻĀpana Sideroblast:He mau hunaola koko ʻulaʻula ʻōpiopio kēia. ʻO ka mea kūikawā e pili ana iā lākou, ma kahi o ka hoʻohana ʻana i ka hao e hana i ka hemoglobin, mālama lākou i ka hao. ʻIke ʻoe, he protein ka hemoglobin e kōkua ana i kā mākou mau hunaola koko ʻulaʻula e lawe i ka oxygen ma ke kino holoʻokoʻa. He mea nui ka hao no kēia. No laila, inā ʻike nā pathologists i kēia mau sideroblasts, ʻo ia hoʻi, ʻaʻole hana pono kāu hemoglobin.
• Nā ʻano ʻē o ke kino: ʻO nā kino nā ʻāpana o kā mākou mau pūnaewele i loaʻa nā genes. Hana ʻia nā genes i ka DNA. Inā he mau ʻano ʻē i loko o kēia mau chromosomes, ʻo ia hoʻi ua hoʻopilikia kekahi mea i kāu DNA a ua hoʻololi i nā chromosomes i loko o kāu mau cell koko.

He aha nā hōʻailona o ka myelodysplastic syndrome?

E hoʻomanaʻo, i kekahi manawa loaʻa paha iā ʻoe ka MDS me ka ʻole o ka hōʻike ʻana i kekahi mau hōʻailona. I kēlā mau hihia, ʻike ʻia ke ʻano ma ka hanana i ka wā o kahi hoʻāʻo koko maʻamau. ʻO ka hōʻailona nui a ka poʻe he nui e ʻike ai he haʻahaʻa ka helu o nā cell koko ʻulaʻula, a i ʻole anemia. Eia nō naʻe, hiki ke like nā hōʻailona o ka anemia a me nā hōʻailona ʻē aʻe o MDS me nā maʻi ʻē aʻe, ʻaʻole koʻikoʻi.

No laila, inā ʻike ʻoe i kekahi o nā loli ma lalo nei, ʻoiai inā ʻaʻole lākou e nalowale ma hope o kekahi mau pule, e ʻike pono i ke kauka.

• Inā manaʻo ʻoe ʻaʻole hiki iā ʻoe ke hanu (kapa mākou i kēia he dyspnea).
• Inā ʻoe e manaʻo nāwaliwali a luhi loa paha , a ʻaʻole e emi ka luhi ma hope o ka loaʻa ʻana o ka hoʻomaha nui.
• Inā ʻike ʻoe ua ʻoi aku ka mae o kou ʻili ma mua o ka maʻamau. Malia paha inā he ʻili ʻeleʻele kou, e nānā ke kauka e ʻike inā he nalowale ke kala i loko o kou mau lihilihi haʻahaʻa, i loko o kou waha, a i loko o kou ihu.
• Inā ʻoi aku ka maʻalahi o ka palapū a kahe paha ke koko ma mua o ka maʻamau.
• Inā ʻike ʻoe i nā kiko ʻulaʻula liʻiliʻi ma kou ʻili, he petechiae paha kēia, nā kīʻaha koko liʻiliʻi ma lalo o ka ʻili.
• Inā loaʻa pinepine iā ʻoe nā maʻi me ke kuni .

He aha ke kumu o MDS?

Me he mea lā ʻelua mau ala nui e hoʻomohala ai i ka MDS. ʻO kekahi ma ke komo ʻana i kekahi mau hana e hoʻonui ai i ka pilikia o ka hoʻomohala ʻana i kēia maʻi. ʻO kekahi ma ka hoʻoilina ʻana i kekahi mau kūlana genetic.

Nā hana e pili ana me MDS

• Ua loaʻa iā ia ka chemotherapy a i ʻole ka radiation therapy no kahi maʻi kanesa ma mua. Ua kapa ʻia kēia e nā kauka he therapy-related MDS (tMDS). ʻO ka maʻamau, ʻike ʻia nā hōʻailona o ka tMDS ma kahi o ʻelima a ʻehiku mau makahiki ma hope o ka mālama ʻana.
• Ka hōʻike ʻana i kekahi mau carcinogens, e like me ka uahi paka, nā pesticides, a me nā mea hoʻoheheʻe e like me ka benzene.
• Ka ʻike ʻia ʻana i nā metala kaumaha e like me ka mercury a i ʻole ke kēpau.

Nā kūlana hoʻoilina e pili ana paha me MDS

Ma waena o 4% a me 15% o ka poʻe me ke ʻano i loaʻa nā kūlana genetic e hoʻonui ai i ko lākou pilikia o ka loaʻa ʻana o ka maʻi. ʻO ia mau kūlana:

• ʻO ka anemia Fanconi: He ʻano maʻi laha ʻole kēia kahi i hana ʻole ai kou iwi iwi i nā ʻāpana koko olakino.
• ʻO Dyskeratosis congenita: He ʻano maʻi genetic kakaʻikahi kēia. Maanei hoʻi, ʻaʻole hana kou iwi iwi i nā hunaola koko olakino kūpono.
• ʻO ka anemia Diamond-Blackfan: He maʻi koko laha ʻole kēia kahi i hana ʻole ai kou iwi iwi i nā hunaola koko ʻulaʻula lawa.

Pehea e ʻike ʻia ai ka myelodysplastic syndrome?

Hahai nā kauka i kekahi mau ʻanuʻu e ʻike ai i kēia kūlana MDS:

• Helu Koko Piha (CBC) a me ka hoʻāʻo ʻokoʻa: Lawe ʻia kahi hāpana koko mai ou aku a kālailai ʻia kāu mau hunaola koko ʻulaʻula a me keʻokeʻo. Helu pū ia i ka helu o kēlā me kēia ʻano hunaola koko keʻokeʻo.
• ʻO ka palaki koko peripheral: Nānā kēia i nā loli i ka nui, ke ʻano, ke ʻano, a me ka nui o nā hunaola koko i loko o kāu hāpana koko, a me ka nui o ka hao i loko o kāu mau hunaola koko ʻulaʻula.
• Ka nānā ʻana o Cytogenetic: Nānā kekahi kauka lapaʻau i kahi hāpana koko ma lalo o kahi microscope e ʻike ai inā he mau loli i nā chromosomes o kāu mau ʻāpana koko.
• ʻO ka biopsy iwi: No ka hana ʻana i kēia hoʻokolohua, hoʻokomo ke kauka i kahi nila hakahaka i loko o kou iwi ʻūhā, lawe i kahi hāpana o ka iwi iwi, ke koko, a me ka iwi, a nānā iā ia ma lalo o kahi microscope.

He aha nā pae o ka myelodysplastic syndrome?

Hoʻokaʻawale nā ​​kauka i ke kūlana i nā pae ma muli o ka pilikia o ka maʻi e ulu ana i ka leukemia myeloid acute (AML). Hoʻohana lākou i kahi ʻōnaehana helu pilikia i kapa ʻia ʻo International Prognostic Scoring System (IPSS) . Eia kekahi mau mea e noʻonoʻo ai nā kauka:

• Inā he mau hōʻailona kou o ka anemia, ke kahe koko, a i ʻole ka maʻi.
• Aia ʻoe i ka pilikia o ka loaʻa ʻana o ka maʻi leukemia.
• Kekahi mau loli i kāu mau chromosomes.
• Inā ua loaʻa iā ʻoe ka MDS ma hope o ka loaʻa ʻana o ka chemotherapy a i ʻole ka radiation therapy no ka maʻi kanesa.
• Kou makahiki a me kou olakino laulā.

Pehea e mālama ʻia ai ka myelodysplastic syndrome?

Noʻonoʻo nā kauka i kekahi mau mea i ka wā e hoʻolālā ai i ka mālama ʻana no MDS:

• Ke ʻano o MDS āu.
• Inā he mau kūlana kou e like me ka anemia, ke kahe ʻana o ke koko, a i ʻole nā ​​​​maʻi ma muli o MDS.
• Inā ua loaʻa iā ʻoe ka MDS ma hope o ka loaʻa ʻana o ka chemotherapy a i ʻole ka radiation therapy no ka maʻi kanesa.
• kou mau makahiki.
• Kou olakino laulā.

ʻO ka mālama ʻana no ka myelodysplastic syndrome e komo pū me ka mālama kākoʻo a me nā lāʻau lapaʻau e hoʻopau ai i nā hunaola koko maikaʻi ʻole .

Mālama Kākoʻo

Hiki i kēia ke komo pū me:

• Hoʻoili koko a hāʻawi koko paha: Inā loaʻa iā ʻoe ka anemia, hiki iā ʻoe ke loaʻa i kahi hoʻoili koko koko ʻulaʻula. Inā loaʻa iā ʻoe nā pilikia me ke kahe ʻana o ke koko, hiki iā ʻoe ke loaʻa i kahi hoʻoili platelet.
• Nā mea hoʻouluulu Erythropoiesis (ESA): Hoʻonui kēia lāʻau i kou pae o nā hunaola koko ʻulaʻula makua.
• Nā lāʻau lapaʻau: Hiki i ka MDS ke hoʻopilikia i kou mau hunaola koko keʻokeʻo, e hoʻonui ana i kou pilikia o ka loaʻa ʻana o nā maʻi. No laila, hiki ke hāʻawi ʻia nā lāʻau lapaʻau.

Nā lāʻau lapaʻau e hoʻopau i nā hunaola koko maikaʻi ʻole

Hiki i kēia ke komo pū me:

• Chemotherapy: Hiki ke hoʻohana ʻia nā ʻano chemotherapy like i hoʻohana ʻia no ka leukemia myeloid acute (AML) no kēia.
• Lāʻau lapaʻau immunosuppressive: Hoʻohana ʻia kēia lāʻau lapaʻau no kekahi mau ʻano o MDS. Hoʻopau kēia lāʻau lapaʻau i ka ʻōnaehana pale kino overactive a hiki ke kōkua i ka hōʻemi ʻana i ka pono no ke kahe koko.
• Hoʻoili ʻana i nā pūnaewele kumu: ʻO kēia ke komo ʻana i ka hoʻololi ʻana i kāu mau pūnaewele hoʻokumu koko ponoʻī me nā pūnaewele kumu, mai iā ʻoe a i ʻole mai kahi mea hāʻawi. Lawe ʻia kēia mau pūnaewele kumu mai kou koko a i ʻole ka iwi iwi. Mālama ʻia kēia mau pūnaewele i loko o ka pahu hau i kou wā e loaʻa ana i ka chemotherapy, a laila hoʻoheheʻe ʻia a hoʻihoʻi ʻia i loko o kou kino ma o ka hoʻokomo ʻana i loko o ke koko. A laila ʻae ʻia kēia mau pūnaewele e ulu i loko o kou kino a hana i nā pūnaewele koko hou.

Hiki i kēlā me kēia o kēia mau lāʻau lapaʻau ke loaʻa nā hopena ʻaoʻao a me nā pilikia like ʻole. Ke noʻonoʻo nei ʻoe i nā koho lapaʻau, he mea nui loa ia e nīnau i kāu kauka e pili ana i nā hopena ʻaoʻao a me nā pilikia o kēlā me kēia ʻano hana.

Hiki i ka poʻe me ka myelodysplasia ke pōmaikaʻi mai ka mālama palliative . Hiki i kēia mālama ke kōkua i ka hoʻokele ʻana i nā hōʻailona o MDS a me nā hopena ʻaoʻao o ka lāʻau. A ʻo ka mea nui, hiki iā ia ke kōkua i ka hoʻokele ʻana i ke kaumaha o ka noho ʻana me ia maʻi mau.

Hiki ke ho'ōla ʻia ka myelodysplastic syndrome?

ʻO ke ala wale nō e ho'ōla loa ai i ka MDS me kahi hoʻoili cell stem holomua . ʻO ka mea pōʻino, ʻaʻole hiki i nā kānaka a pau ke loaʻa kēia lāʻau lapaʻau. E nīnau i kāu kauka inā kūpono kēia ʻano hoʻoili iā ʻoe a inā he koho ia e pono ai ʻoe e noʻonoʻo.

He aha ke kūlana o ke ola o kekahi kanaka me ka myelodysplastic syndrome?

ʻO ka Myelodysplastic syndrome kahi pilikia olakino koʻikoʻi e hiki ai ke hoʻoweliweli i ke ola.Eia kekahi, he pilikia olakino paʻakikī loa kēia, a ua ʻokoʻa ka hopena o kēlā me kēia kanaka. ʻO kāu kauka ke kumu maikaʻi loa o ka ʻike e pili ana i kou kūlana pilikino a me ka wānana.

Hiki ke pale ʻia ka myelodysplastic syndrome?

ʻAʻole, akā ʻo ka hoʻomaopopo ʻana i nā kumu pilikia no MDS hiki ke kōkua i nā kauka e ʻike a mālama i ka MDS i ka wā mua. Pili ka Myelodysplastic syndrome me ka chemotherapy a me ka radiation therapy, a me ka ʻike ʻana i kekahi mau kemika a me nā metala kaumaha. E kamaʻilio me kāu kauka e pili ana i kāu mōʻaukala olakino a me nā ʻike kokoke a lōʻihi i nā kemika a me nā metala kaumaha. Hiki iā lākou ke kōkua iā ʻoe e loiloi i kāu pilikia pilikino.

Pehea wau e mālama ai iaʻu iho?

Hoʻopilikia ka MDS i kēlā me kēia kanaka i kekahi ʻano like ʻole. Loaʻa i kekahi poʻe ka MDS akā ʻaʻohe o lākou hōʻailona. Inā ʻo kēia ke ʻano no ʻoe, hiki i kāu kauka ke ʻōlelo i nā hoʻāʻo koko i kēlā me kēia ʻekolu mahina e nānā i nā loli i loko o kāu mau cell kumu koko. Inā loaʻa iā ʻoe ka MDS a ke loaʻa nei iā ʻoe ka mālama kākoʻo, e like me ke kahe koko, pono paha ʻoe i nā lāʻau lapaʻau hou e hōʻemi i ke alapine o ke kahe koko. Eia kekahi mau ʻanuʻu hiki iā ʻoe ke hana e kākoʻo i kāu lāʻau lapaʻau:

• Inā ʻoe e hoʻohana i nā huahana paka (me ka puhipaka a me ka vaping), e hoʻāʻo e haʻalele. E nīnau i kāu kauka e pili ana i nā papahana hoʻōki paka.
• E mālama i ke kaumaha olakino nou iho.
• E ʻimi i nā hana kino āu e makemake ai a hana pinepine iā lākou i ka hiki.
• E hoʻomanaʻo he maʻi mau ka MDS, a hiki i nā kauka ke mālama iā ia akā ʻaʻole hiki ke ho'ōla. ʻAʻole e maopopo i nā kānaka a pau kāu e hele nei. ʻO ke kamaʻilio ʻana me nā poʻe ʻē aʻe i loaʻa i nā mea like me ʻoe e hiki ke kōkua. Hiki i kāu hui lapaʻau ke kōkua iā ʻoe e ʻimi i nā papahana a me nā kumuwaiwai e like me kēia.

ʻOiai he maʻi mau ka MDS, ʻaʻole ia manaʻo e pono ʻoe e ola me ka manaʻolana ʻole. Aia nā lāʻau lapaʻau e hiki ke kōkua i ka kaohi ʻana i ke kūlana.

Āhea wau e hele ai i ka lumi pilikia?

Hiki i ka maʻi Myelodysplastic ke hoʻoulu i ka anemia, nā pilikia kahe koko, a me nā maʻi. Pono ʻoe e hele i ka lumi pilikia inā loaʻa iā ʻoe:

• Inā loaʻa iā ʻoe ke kuni he 38.3 degere Celsius (100.4 degere Fahrenheit) a ʻoi aku paha, he hōʻailona ke kuni e loaʻa paha iā ʻoe kahi maʻi.
• Inā ʻoe e kahe koko ana me ke kāohi ʻole.

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

No ka mea, he maʻi laha ʻole ka myelodysplastic syndrome, nui paha kāu mau nīnau e pili ana i ia mea. Eia kekahi mau nīnau hiki iā ʻoe ke nīnau i kāu kauka:

• He maʻi kanesa anei ʻo MDS?
• Pehea ka hopena o MDS iaʻu?
• E hoʻopilikia anei kaʻu MDS i ke olakino koʻikoʻi? Inā pēlā, he aha ke ʻano?
• ʻAʻohe oʻu hōʻailona. He aha kaʻu e hana ai e hoʻopaneʻe i ka ulu ʻana o nā maʻi e pili ana iā MDS?

Leka Hoʻihoʻi Hope Loa

Inā loaʻa iā ʻoe ka myelodysplastic syndrome (MDS), he ʻano maʻi kanesa ia he maʻi mau loa. ʻAʻohe maʻi maʻalahi, akā ʻo ka noho ʻana me kahi maʻi mau loa ʻo ia hoʻi ke kū ʻana i ka hopena o ka naʻau. Akā ʻo ka noho ʻana me MDS ʻaʻole ia he manaʻo e pono ʻoe e haʻalele i ka manaʻolana. Aia nā lāʻau lapaʻau e hiki ke kōkua i ka kaohi ʻana i ka MDS. Hiki paha iā ʻoe ke kūpono no kahi hoʻokolohua lapaʻau e ʻimi nei i nā lāʻau lapaʻau hou no ka myelodysplastic syndrome. Aia kekahi mau mea hiki iā ʻoe ke hana nou iho. E nīnau i kāu kauka e pili ana i nā loli o ke ʻano o ka nohona, e like me ka ʻai maikaʻi a me ka hoʻoikaika kino. Hiki i kēia mau mea ke kōkua iā ʻoe e noho olakino e like me ka hiki. Mai makaʻu, a mai ʻeha wale. E kamaʻilio me kāu kauka e pili ana i nā mea āpau, a e loaʻa ke kōkua āu e pono ai.

ʻO ka maʻi Myelodysplastic, MDS, myelodysplasia, maʻi ʻaʻai koko, iwi ʻiʻo, anemia, nā hunaola koko