Kāore ō pūtau toto e hanga tika ana? Me ako tātou mō te Myelodysplastic Syndrome (MDS)!

Kei te ngenge tonu koe, kei te ngenge rawa hoki? He uaua ki te manawa i ētahi wā ahakoa kua mahi i tētahi mahi iti? Kāore rānei koe e kite ana i ngā marō me te toto i ngā wāhi katoa o tō tinana? Ahakoa e whakaaro ana koe he mea noa ēnei, i ētahi wā tera pea he take kei muri i tēnei me āwangawanga koe. I tēnei rā ka kōrero tātou mō tētahi o aua mate, arā, ko te myelodysplastic syndrome.

He aha te mate myelodysplastic (MDS)?

Nā, kia tirohia tātou he aha tēnei Myelodysplastic Syndrome (MDS). Ka karangatia hoki e ētahi ko Myelodysplasia. Nō nā tata nei, ka karangatia hoki ko Myelodysplastic Neoplasm. He momo matepukupuku tēnei. Engari ko te mea ka tupu i roto i tēnei, ko ngā pūtau taketake e hanga toto ana i roto i tō tātou tinana – e karangatia ana e tātou ko (ngā pūtau take hematopoietic) – kāore e pakari tika, arā, kāore e tipu tika. Kei roto i tō tātou hinu wheua ēnei pūtau. Nō reira ka tīmata te raruraru ina kore ēnei pūtau taketake e whanake tika, ka huri hei pūtau toto whero hauora, hei pūtau toto mā, hei pereti toto.

Ina kore e ranea ngā pūtau toto hauora o tō tinana, ka pāngia koe e ngā mate kino pēnei i te anemia. Ka pāngia hoki koe e ngā mate pāwera me te toto toto nui. Mō ētahi tāngata, ka kino haere te MDS ka huri hei mate pukupuku e kiia nei ko te acute myeloid leukemia (AML) .

He tino onge tēnei mate, e kiia nei ko te MDS. I te Hononga o Amerika, e pāngia ana e te whā tāngata i roto i te 100,000 tāngata ia tau. Mēnā ka kitea tō mate MDS, ka ngana ō tākuta ki te whakaroa i te haere whakamua o te mate, ki te whakahaere i ō tohumate, me te rongoā i ngā raruraru ka puta mai.

He aha ngā momo MDS kei reira?

Ka wehea e ngā tākuta tēnei mate MDS ki ētahi momo. Ka tirohia e rātou ngā hua o ētahi whakamātautau. Me titiro tātou ki ngā āhuatanga o aua whakamātautau:

• Ngā toto toto whero me ngā toto mā hauora me te maha o ngā pereti toto: Ina iti ō toto toto whero, ka kiia tēnei he anemia. Tērā pea ka tino ngenge koe, ka poto hoki te manawa.
• Ngā pūtau toto kāore anō kia pakari, ngā pahūtanga rānei: He rite ēnei pahūtanga ki ngā pūtau toto kāore anō kia pakari. He nui rawa te wāhi e nohoia ana e rātou i roto i te hinu wheua, ā, ka uaua ake te hanga o ngā pūtau toto hauora. Ki te kore e nui ō pūtau toto ma hauora, ka maha ake pea ō mate. Ā, ki te kore e nui ō pereti toto hauora, ka uaua pea te whakamutu i te toto.
• Ngā Sideroblast:He toto whero kāore anō kia pakari ēnei. Ko te mea motuhake mō rātou, ehara i te mea ka whakamahia te rino hei hanga i te hemoglobin, engari ka rongoatia te rino. Kei te mōhio koe, ko te hemoglobin he pūmua e āwhina ana i ō tātou toto whero ki te kawe i te hāora puta noa i te tinana. He mea nui te rino mō tēnei. Nō reira, ki te kite ngā tākuta mate i ēnei sideroblasts, ko te tikanga kāore tō hemoglobin e mahi tika ana.
• Ngā rerekētanga o te ira: Ko ngā ira ngā wāhanga o ō tātou pūtau kei roto ngā ira. He ira te mea hanga o ngā ira. Mena he rerekētanga kei roto i ēnei ira, ko te tikanga kua pāngia tō ira e tetahi mea, ā, kua puta he huringa ki ngā ira i roto i ō pūtau toto.

He aha ngā tohu o te mate myelodysplastic?

Kia maumahara, i ētahi wā, tera pea ka pāngia koe e te MDS, engari kāore he tohu e kitea. I ēnei wā, ka kitea noa te mate i roto i te whakamātautau toto noa. Ko te tohu matua e pāngia ana e te tini o te tangata ko te iti o te maha o ngā toto toto whero, arā, te anemia. Heoi, ko ngā tohu o te anemia me ētahi atu tohu o te MDS ka rite ki ērā o ētahi atu mate, kāore i te tino kino.

Nō reira, ki te kite koe i tētahi o ngā huringa i raro nei, ina koa kāore e memeha i muri i ētahi wiki, me toro atu ki te tākuta.

• Ki te mea kāore e taea e koe te manawa (e kiia ana tēnei he dyspnea).
• Ki te ngoikore koe, ki te tino ngenge rānei , ā, kāore te ngenge e memeha ahakoa te nui o te okiokinga.
• Ki te kite koe he mā ake tō kiri i tō te tikanga. Mēnā he kiri mangu tōu, ka tirohia pea e te tākuta mēnā kei te ngaro te tae o roto i ō kamo o raro, i roto i tō waha, me roto hoki i tō ihu.
• Mena ka tere ake tō maru, tō toto rānei i tō te tikanga.
• Ki te kite koe i ngā ira whero ririki, koi, kei runga i tō kiri, he petechiae pea ēnei, arā, he uaua toto iti kei raro i te kiri.
• Mena he maha ngā wā ka pāngia koe e te kirika me ngā mate pāwera .

He aha ngā take o te MDS?

E rua ngā huarahi matua hei whakawhanake i te MDS. Ko tētahi mā te whai wāhi atu ki ētahi mahi e whakanui ake ai te mōrearea o te whakawhanake i tēnei mate. Ko tētahi mā te tuku iho i ētahi āhuatanga ira.

Ngā mahi ka taea te hono atu ki te MDS

• Kua whiwhi koe i te rongoā chemotherapy, i te rongoā radiation rānei mō tētahi mate pukupuku o mua. Ka kiia tēnei e ngā tākuta ko te therapy-related MDS (tMDS). I te nuinga o te wā, ka puta ngā tohu o te tMDS i te rima ki te whitu tau i muri i te maimoatanga.
• Te pānga ki ētahi matū whakaputa mate pukupuku, tae atu ki te paowa tupeka, ngā patupatu pepeke, me ngā whakarewa pēnei i te benzene.
• Te pānga ki ngā konganuku taumaha pērā i te mercury, te mata rānei.

Ngā āhuatanga tuku iho e pā ana ki te MDS

I waenganui i te 4% me te 15% o te hunga whai mate nei kua riro mai i a rātou ngā mate ira e whakapiki ake ana i tō rātou tūponotanga ki te pāngia e te mate. Ko ētahi o ēnei mate ko:

• Te mate toto Fanconi: He āhuatanga ira onge tēnei e kore ai e nui ngā pūtau toto hauora e puta mai i tō hinu wheua.
• Dyskeratosis congenita: He mate ira tino onge tēnei. I konei anō hoki, kāore e nui ngā pūtau toto hauora e whakaputaina ana e tō hinu wheua.
• Te mate toto Diamond-Blackfan: He mate toto onge tēnei e kore ai e nui ngā toto whero e whakaputaina e tō hinu wheua.

Me pēhea te tautuhi i te mate myelodysplastic?

He maha ngā mahi e whaihia ana e ngā tākuta hei tātaritanga i tēnei mate MDS:

• Te Tatau Toto Katoa (CBC) me te whakamātautau rerekētanga: Ka tangohia he tauira toto mai i a koe, ā, ka tātarihia ō toto whero me ō toto mā. Ka tatauhia hoki te maha o ia momo toto mā.
• Te whakamātautau toto ā-taha: Ka tirohia tēnei mō ngā panoni o te rahi, te momo, te āhua, me te rahi o ngā pūtau toto i roto i tō tauira toto, tae atu ki te tirotiro mēnā he nui rawa te rino i roto i ō pūtau toto whero.
• Tātaritanga cytogenetic: Ka tirohia e te tākuta mate pukupuku he tauira toto i raro i te karuārai hei tirotiro mēnā he huringa kei roto i ngā chromosomes o ō pūtau toto.
• Te koiora wheua wheua: Hei mahi i tēnei whakamātautau, ka werohia e te tākuta he ngira tuwhera ki roto i tō wheua hope, ka tangohia he tauira o te hinu wheua, te toto, me te wheua, kātahi ka tirohia i raro i te karuārai.

He aha ngā wāhanga o te myelodysplastic syndrome?

Ka wehea e ngā tākuta te āhua ki ngā wāhanga i runga i te mōrearea o te whanaketanga o te mate nei hei mate toto myeloid acute (AML). Ka whakamahia e rātou he pūnaha tatau mōrearea e kiia nei ko te International Prognostic Scoring System (IPSS) . Anei ētahi mea ka whakaarohia e ngā tākuta:

• Ahakoa he tohu kei a koe o te anemia, te toto, te mate pukupuku rānei.
• Kei te tūpono koe ki te pāngia e te mate toto toto.
• Ētahi huringa o ō chromosomes.
• Ahakoa i whakawhanakehia e koe te MDS i muri i te whiwhinga chemotherapy, radiation therapy rānei mō te mate pukupuku.
• Tō tau me tō hauora whānui.

Me pēhea te rongoā i te mate myelodysplastic?

He maha ngā mea ka whakaarohia e ngā tākuta ina whakamahere ana i te maimoatanga mō te MDS:

• Te momo MDS kei a koe.
• Ahakoa kei a koe ngā āhuatanga pēnei i te anemia, te toto, ngā mate pāwera rānei nā te MDS.
• Ahakoa i whakawhanakehia e koe te MDS i muri i te whiwhinga chemotherapy, radiation therapy rānei mō te mate pukupuku.
• tō tau.
• Tō hauora whānui.

Ko te maimoatanga mō te myelodysplastic syndrome ka uru pea ki te tiaki tautoko me ngā maimoatanga e whakangaro ana i ngā pūtau toto hauora .

Manaaki Tautoko

Kei roto pea i tēnei:

• Te whakawhiti toto, te tuku toto rānei: Mena he mate toto kore koe, ka taea te whakawhiti toto whero. Mena he raruraru toto tōu, ka taea te whakawhiti toto pereti.
• Ngā rongoā whakaohooho i te erythropoiesis (ESA): Ka whakanuia e tēnei maimoatanga te taumata o ngā toto toto whero kua pakeke.
• Ngā rongoā paturopi: Ka pā pea te MDS ki ō toto toto mā, ka piki ake te tūponotanga o te pangia e ngā mate. Nō reira, ka taea te hoatu rongoā paturopi.

Ngā maimoatanga hei whakakore i ngā pūtau toto kino

Kei roto pea i tēnei:

• Te rongoā matū: Ka taea te whakamahi i ngā momo rongoā matū e whakamahia ana mō te mate pukupuku toto myeloid acute (AML) mō tēnei.
• Whakaora ārai mate: Ka whakamahia tēnei maimoatanga mō ētahi momo momo MDS. Ka pehia e tēnei maimoatanga te pūnaha ārai mate e kaha rawa ana te mahi, ā, ka āwhina i te whakaiti i te hiahia mō ngā whakawhiti toto.
• Te whakawhitinga pūtau take: Ko te whakakapi i ō ake pūtau hanga toto ki ngā pūtau take, mai i a koe, mai i tētahi kaituku rānei. Ka tangohia ēnei pūtau take mai i tō toto, i tō wheua wheua rānei. Ka rongoatia ēnei pūtau ki roto i te pouaka tio i a koe e whiwhi ana i te chemotherapy, kātahi ka rewahia, ka whakahokia ki roto i tō tinana mā te werohanga uaua. Kātahi ka tukuna ēnei pūtau kia tipu i roto i tō tinana, kia hanga hoki i ngā pūtau toto hou.

He rerekē ngā pānga taha me ngā raruraru o ia maimoatanga. Ina whakaarohia ana ngā kōwhiringa maimoatanga, he mea nui kia pātai atu koe ki tō tākuta mō ngā pānga taha me ngā raruraru o ia tikanga.

Tērā pea ka whai hua te hunga whai myelodysplasia mai i te tiaki mamae . Ka taea e tēnei tiaki te āwhina i te whakahaere i ngā tohu o te MDS me ngā pānga taha o te maimoatanga. Ā, he mea nui, ka taea te āwhina i te whakahaere i te ahotea o te noho me tēnei mate pūmau.

Ka taea te rongoā i te mate myelodysplastic?

Ko te huarahi anake hei whakaora i te MDS ko te whakawhiti pūtau take angitu . Engari, kāore e taea e te katoa te whiwhi i tēnei maimoatanga. Pātai atu ki tō tākuta mēnā he tika tēnei momo whakawhitinga pūtau māu, ā, mēnā he kōwhiringa tēnei hei whakaaroaro māu.

He aha te roanga o te oranga o te tangata e pāngia ana e te mate myelodysplastic?

He raruraru hauora nui te mate Myelodysplastic ka taea te whakararu i te ora.He take hauora tino uaua tēnei, ā, he rerekē te pānga ki te katoa. Ko tō tākuta te puna mōhiohio pai rawa atu mō tō āhuatanga takitahi me te matapae.

Ka taea te ārai i te mate myelodysplastic?

Kāo, engari mā te mārama ki ngā āhuatanga mōrearea o te MDS ka āwhina i ngā tākuta ki te tautuhi me te rongoā wawe i te MDS. E pā ana te mate Myelodysplastic ki te chemotherapy me te radiation therapy, tae atu ki te pānga ki ētahi matū me ngā konganuku taumaha. Kōrero ki tō tākuta mō tō hītori hauora me ngā pānga tata, roa ki ngā matū me ngā konganuku taumaha. Ka taea e rātou te āwhina i a koe ki te aromatawai i tō mōrearea whaiaro.

Me pēhea taku tiaki i ahau anō?

He rerekē te pānga o te MDS ki te katoa. He MDS tō ētahi engari kāore he tohu. Mēnā koinei tō āhua, ka tono pea tō tākuta i ngā whakamātautau toto i ia toru marama hei aroturuki i ngā huringa o ō pūtau take toto. Mēnā he MDS tōu, ā, kei te whiwhi koe i te tiaki tautoko, pērā i te whakawhiti toto, me whai maimoatanga anō pea koe hei whakaiti i te auau o te whakawhiti toto. Anei ētahi mahi ka taea e koe te mahi hei tautoko i tō maimoatanga:

• Ki te whakamahi koe i ngā hua tupeka (tae atu ki te momi hikareti me te vaping), ngana ki te whakamutu. Pātai atu ki tō tākuta mō ngā kaupapa whakamutu tupeka.
• Kia mau tonu tō taumaha hauora.
• Kimihia ngā mahi ā-tinana e pai ana ki a koe, ā, me mahi i aua mahi i ngā wā katoa e taea ana.
• Kia maumahara he mate pūmau te MDS, ā, ka taea e ngā tākuta te rongoā engari kāore e taea te whakaora. Kāore te katoa e mārama ki tō wheako. Mā te kōrero ki ētahi atu kua pā ki ngā āhuatanga ōrite ki a koe ka taea te āwhina. Ka taea e tō tīma hauora te āwhina i a koe ki te kimi kaupapa me ngā rauemi pēnei i ēnei.

Ahakoa he mate mau tonu te MDS, ehara i te mea me noho noa koe me te kore tumanako. He maimoatanga kei reira hei āwhina i te whakahaere i te mate.

Āhea ahau me haere ki te rūma whawhati tata?

Ka taea e te mate Myelodysplastic te whakararu i te anemia, ngā raruraru toto, me ngā mate pāwera. Me haere koe ki te rūma whawhati tata mēnā kei a koe:

• Mena he kirika tōu kei te 38.3 nekehanga Celsius (100.4 nekehanga Fahrenheit) neke atu rānei, he tohu te kirika kei a koe he mate urutā.
• Mena kei te toto tō toto kāore e taea te whakahaere.

He aha ngā pātai me pātai atu e au ki taku tākuta?

Nā te mea he mate onge te myelodysplastic syndrome, tera pea he maha āu pātai mōna. Anei ētahi pātai ka taea e koe te pātai atu ki tō tākuta:

• He mate pukupuku te MDS?
• He aha te pānga o te MDS ki ahau?
• Ka pā mai ngā raruraru hauora nui ki taku MDS? Mēnā koinā, he aha te momo?
• Kāore he tohu o tōku. Me aha ahau hei whakaroa i te whanaketanga o ngā mate e pā ana ki te MDS?

Karere Whakamutunga mō te Tango ki te Kāinga

Mena kei a koe te mate myelodysplastic (MDS), he momo mate pukupuku tēnei e mau tonu ana. Kāore he mate e ngāwari ana, engari ko te noho me te mate mau tonu ko te aro atu ki te pānga kare ā-roto ka pā mai. Engari ko te noho me te MDS ehara i te mea me mutu te tumanako. He maimoatanga kei reira hei āwhina i te whakahaere i te MDS. Tērā pea ka āhei koe ki te whai i tētahi whakamātautau haumanu e rapu ana i ngā maimoatanga hou mō te mate myelodysplastic. He mea anō hoki ka taea e koe te mahi māu ake. Pātai atu ki tō tākuta mō ngā huringa o te noho, pērā i te kai pai me te whakakori tinana. Ka taea e ēnei mea te āwhina i a koe kia noho hauora tonu. Kaua e mataku, kaua hoki e mamae ko koe anake. Kōrero ki tō tākuta mō ngā mea katoa, ā, tikina te āwhina e hiahiatia ana e koe.

` Te mate Myelodysplastic, MDS, myelodysplasia, mate pukupuku toto, hinu wheua, anemia, ngā pūtau toto