ʻO ka lā hope o Pepeluali i kēlā me kēia makahiki ʻo ia ka International Day of Rare Diseases.E like me kona inoa, pili nā maʻi Rare i nā maʻi me ka haʻahaʻa loa.E like me ka wehewehe ʻana o ka WHO, ʻo nā maʻi laha ʻole he 0.65 ‰ ~ 1 ‰ o ka nui o ka heluna kanaka.I loko o nā maʻi kakaʻikahi, ʻoi aku ka liʻiliʻi o nā maʻi ʻokoʻa, a ʻo nā maʻi maʻi me ka nui o ka liʻiliʻi ma lalo o 6/100000 hiki ke kapa ʻia ʻo "rare tumors".
ʻAʻole i liʻuliʻu, ua loaʻa ʻo FasterCures Non-invasive Cancer Center i kahi haumāna kula nui ʻo Xiaoxiao he 21 mau makahiki me kahi maʻi maʻi maʻi 25 cm piha i loko o kona kino.He maʻi kakaʻikahi kēia i kapa ʻia ʻo "Ewing's sarcoma", a ʻo ka hapa nui o nā maʻi ma waena o 10 a 30 mau makahiki.Ma muli o ka nui a me ka ʻino o ka ʻōpū, ua hoʻoholo kona ʻohana e hele mai i Beijing e ʻimi i kahi lāʻau lapaʻau.
I ka makahiki 2019, ua ʻike pinepine ke kaikamahine he 18 makahiki i ka umauma a me ke kua a ua ʻike i kahi ʻeke.Ua lawe kona ʻohana iā ia i ka haukapila no ka nānā ʻana, ʻaʻohe mea ʻino.Ua manaʻo ʻo ia e luhi paha ʻo ia i kāna mau kula kiʻekiʻe, no laila ua hoʻokomo ʻo ia i ka plaster a me he mea lā ua hoʻomaha ʻia.Ma hope o kēlā, waiho ʻia ka mea.
I hoʻokahi makahiki ma hope mai, ua ʻeha ʻo Xiaoxiao a ua ʻike ʻia ʻo Ewing's sarcoma i nā hoʻokolohua mau.ua ʻōlelo ʻia kekahi mau halemai ma hope o ka chemotherapy."ʻAʻole mākou i hōʻoluʻolu, a ʻaʻole hilinaʻi i ka hoʻōla ʻana i kēia maʻi," wahi a Xiaoxiao.Ua piha ʻo ia i ka makaʻu i ka chemotherapy a me ka hōʻoki ʻana, a ma hope ua koho ʻo ia i ka pale kino a me ka lāʻau lapaʻau Kina.
I ka makahiki 2021, ua hōʻike ʻia ka nānā hou ʻana ua hoʻonui ʻia ke koko i 25 mau kenimika, a ʻoi aku ka ʻeha o ka ʻeha haʻahaʻa ma mua o ka wā ma mua.Ua hoʻomaka ʻo Xiaoxiao e lawe i ka ʻeha ibuprofen e hoʻomaha ai i ka ʻeha.
Inā ʻaʻohe lāʻau lapaʻau maikaʻi, e pōʻino loa ke kūlana o Xiaoxiao, pono ka ʻohana e kau i ko lākou naʻau i loko o ko lākou waha e ola ai, hopohopo e pili ana i ka make e lawe aku iā Xiaoxiao i kēlā me kēia manawa.
"No ke aha la keia mai laha ole ia kakou?"
E like me ka ʻōlelo ʻana, hiki mai ka ʻino mai ka lani mālamalama, ʻaʻole maopopo ka hopena o ke kanaka e like me ke aniau.
ʻAʻole hiki i kekahi ke wānana i ka wā e hiki mai ana, ʻaʻole hiki ke wānana i ka mea e hiki mai ana i kona kino.Akā, he kuleana ko kēlā me kēia ola ke ola.
ʻAʻole pono e maloʻo nā pua i ka makahiki like!
ʻO Xiaoxiao, e lele ana ma waena o ka manaʻolana a me ka hōʻeha, hele mai i Beijing a koho i kahi lāʻau lapaʻau non-invasive.
ʻO ka nānā ʻana i ka ultrasound ablation ua lōʻihi ka hihia o kēia maʻi like, a ua hoʻokō maikaʻi ʻia ka hoʻōla ʻana o nā lālā no nā poʻe maʻi me nā ʻōpū iwi e kū ana i ka ʻoki ʻana, ʻoi aku ka ʻōpio ma mua o Xiaoxiao.
Ua hana ʻia ka hana i ka manawa kūpono, no ka mea, ua hana ʻia ka hana ma ke ʻano makaʻala loa, ua uē mālie ʻo Xiaoxiao, a i ʻole i kanikau i ka pono ʻole o ka hopena, a i ʻole e hoʻomaikaʻi i ke Akua no ka wehe ʻana i kahi puka hou nona.Me he mea lā ua hoʻokuʻu ʻia kona uē ʻana, akā ʻo ka mea pōmaikaʻi, ua maikaʻi ka hopena o ka hana ʻana ma ia lā, a aia ka manaʻolana o ke ola.
Wahi a nā kauka, ʻo ka maʻi maʻemaʻe ʻo sarcoma kahi maʻi ʻaʻai loa me ka maʻi ma lalo o 1/100000.ʻO ka nui o nā hihia hou ma Kina ma lalo o 40,000 i kēlā me kēia makahiki.Ke hiki mai ka metastasis, ʻo ka manawa ola ma kahi o hoʻokahi makahiki.
"Hiki ke loaʻa nā sarcomas palupalu ma nā ʻāpana āpau o ke kino, ʻo ka ʻili."
Ua ʻōlelo nā kauka, ua hūnā ʻia ka hoʻomaka ʻana o ka maʻi, a ʻike ʻia nā hōʻailona pili i ka wā e hoʻokaumaha ʻia ai ka puʻupuʻu ma nā ʻāpana ʻē aʻe a puni.No ka laʻana, ke mālama ʻia nei ka mea maʻi me ka sarcoma ʻiʻo palupalu o ka lua ihu i loko o ke keʻena o ke keʻena o ka maʻi rare.No ka lō'ihi 'ole o ka ho'ōla 'ana o ka ihu, ua 'ike 'ia ka pu'upu'u ma ka ho'okolokolo CT.
"Akā naʻe, ʻaʻole maʻamau nā hōʻailona like ʻole, e like me ka ihu ihu, ʻo ka pane mua o kēlā me kēia kanaka he anu, a aneane ʻaʻohe mea e noʻonoʻo i kahi maʻi maʻi, ʻo ia hoʻi ma hope o ka hōʻike ʻana i nā hōʻailona, ʻaʻole ʻike ka mea maʻi i ke kauka. manawa.
ʻO ka manawa ola o ka sarcoma ʻiʻo palupalu e pili ana i ka staging.Ke hiki mai ka iwi metastasis, ʻo ia hoʻi, he lohi, ʻo ka manawa ola ma kahi o hoʻokahi makahiki. "
Ua ʻōlelo ʻo Chen Qian, ke kauka kiʻekiʻe mai FasterCures Center, ʻo ka maʻi maʻemaʻe o nā sarcomas maʻi i ka wā ʻōpio, no ka mea, i kēia manawa, aia nā ʻiʻo a me nā iwi i ke kahua o ka ulu nui a me ka ulu ʻana, a hiki ke loaʻa kekahi hyperplasia abnormal i ke kaʻina o ke kelepona wikiwiki. hoonui.
ʻO kekahi paha he hyperplasia maikaʻi a i ʻole nā ʻeha precancerous i ka wā mua, akā me ka nānā ʻole ʻana a me ka mālama ʻana no nā kumu like ʻole, hiki i ka hopena ke alakaʻi i ka sarcoma kiko palupalu.
"Ma ka ʻōlelo maʻamau, ʻoi aku ka kiʻekiʻe o ka lāʻau lapaʻau o nā ʻōpio ma mua o ka poʻe pākeke, ʻo ia ka mea i hoʻokumu ʻia ma ka ʻike mua ʻana, ka ʻike mua ʻana a me ka mālama mua ʻana, akā ʻo ka nui o nā ʻōpio i ʻike i ka lohi a nalowale ka manawa no ka hoʻōla radical. , no laila, he mea koʻikoʻi loa nā 'amua' ʻekolu."
Ua ʻōlelo ʻo Chen Qian he nui ka poʻe waena a me nā ʻelemakule i hana i ka maʻamau o ka nānā kino maʻamau, akā aia nō ka nui o nā ʻōpio ʻaʻole i hana pēlā.
"He nui nā mākua i hopohopo ma hope o ka ʻike ʻia ʻana o kā lākou mau keiki i ka maʻi ʻaʻai.
ʻO nā hoʻokolohua kino o ke kula he mau mea maʻamau, ʻoiaʻiʻo, ʻo ka hoʻokolohua kino maʻamau o kēlā me kēia makahiki hiki ke hana i ka nānā ʻino wale ʻana, ʻike ʻia nā mea ʻino a laila hiki ke ʻike ʻia ka pilikia."
No laila, inā he mau mākua o nā ʻōpio a i ʻole nā poʻe ʻōpio i ka iwakālua a me kanakolu, pono lākou e hoʻolohe i ka nānā kino, mai lawe i kahi ʻano papa, akā e nīnau i ke kauka no ke koho ʻana i nā papahana ma ke ʻano kikoʻī.
Ka manawa hoʻouna: Mar-09-2023