ʻAʻole anei he mea maʻamau nā ʻōhū a me nā ʻulaʻula ma kou ʻili? E aʻo kākou e pili ana i (Cutaneous T-cell Lymphoma - CTCL)

Loaʻa paha iā ʻoe nā ʻano ʻulaʻula a me nā puʻupuʻu ma kou ʻili, ʻeā? I kekahi manawa he nui ko lākou ʻili a ʻānai. Manaʻo pinepine mākou he maʻi maʻamau wale nō kēia, eczema, a psoriasis paha. Akā, ʻo ka pilikia ʻili mau ʻaʻole e hoʻomaikaʻi no nā makahiki he nui, hiki ke lilo i mea koʻikoʻi iki. ʻO ia kekahi o kēlā mau maʻi kakaikahi e pono ai kākou a pau e makaʻala.

He aha ka Cutaneous T-cell Lymphoma (CTCL)?

I ka ʻōlelo maʻalahi, he ʻano maʻi koko kakaikahi loa ʻo CTCL e hoʻopilikia ana i ko mākou ʻili. ʻO ka ʻili ka ʻōkana nui loa i loko o ko mākou kino. Hoʻopilikia pololei kēia maʻi kanesa i ko mākou ʻili. No kahi hui nui o nā maʻi kanesa i kapa ʻia ʻo `(non-Hodgkin lymphoma)`.

I kēia manawa, ke noʻonoʻo nei paha ʻoe pehea e hiki ai i kahi maʻi kanesa i loko o ke koko ke komo i ka ʻili. ʻĀ, aia i loko o ko kākou koko kahi ʻano o nā hunaola koko keʻokeʻo i kapa ʻia ʻo "lymphocytes". He ʻāpana koʻikoʻi loa kēia o ka ʻōnaehana pale o ko kākou kino. ʻO kekahi ʻano o kēia mau hunaola lymph i kapa ʻia ʻo "T-cells". I ka CTCL, lilo kēia mau hunaola T i nā hunaola kanesa a hoʻomaka e māhele me ka ʻole o ke kāohi. A laila hele mai kēia mau hunaola kanesa i ka ʻili a hōʻiliʻili. ʻO ia ka manawa e hoʻomaka ai nā hōʻailona ʻili e ʻike ʻia.

Mai makaʻu e ʻōlelo he maʻi kanesa ia. Hiki i ka nui o ka poʻe me CTCL ke kāohi i ka maʻi ma hope o ka mālama ʻana (`remission`). No laila hiki iā lākou ke ola maʻamau me ka ʻole o ka hoʻopilikia nui ʻana. Akā he mea maʻamau ke kaumaha ke ʻike ʻoe he maʻi kanesa kou. Aia mau kāu kauka a me kāu hui lapaʻau e kōkua iā ʻoe.

He aha nā ʻano nui o CTCL?

Aia kekahi mau ʻano o CTCL. Akā i waena o lākou, aia ʻelua mau ʻano nui i ʻike ʻia. E hoʻomaopopo pono kākou i kēia mau mea.

He aha nā hōʻailona o kēia maʻi?

Hiki ke ʻokoʻa nā hōʻailona o CTCL mai kēlā kanaka a kēia kanaka. Ua like loa lākou me nā maʻi ʻili maʻamau. ʻO ia ke kumu e paʻakikī ai ke ʻike.

• Nā puʻupuʻu e ʻike ʻia ma ka ʻili. I kekahi manawa hiki i kēia ke māwae a lilo i mau ʻeha.
• Ka hāʻule ʻana o ka lauoho .
• He ʻano ʻulaʻula e like me ka ʻōhūhū e ʻike ʻia ma ke kino holoʻokoʻa a maneʻo mau .
• ʻO ke ʻano o nā ʻāpana kala ʻole ma ka ʻili.
• Nā ʻōpala maneʻo, i kekahi manawa unahi, i piʻi aʻe mai ka ʻili.
• Ka pehu ʻana o nā kelepa ( ma ka ʻāʻī , nā armpits, ka ʻūhā, a pēlā aku).
• Ka mānoanoa a me ka ʻāʻī ʻana o ka ʻili ma nā poho lima a me nā kapuwaʻi .

No ke aha e loaʻa ai kēia ʻano maʻi?

Ua haʻi ʻia mai iā mākou ma CTCL, lilo nā pūnaewele T i mau pūnaewele kanesa. Akā, ʻaʻole maopopo i nā kauka ke kumu o kēia. Akā, aia ʻelua mau mea i manaʻo ʻia he kuleana ko lākou.

1. Nā ʻano like ʻole o ka hoʻoilina: Hoʻomalu nā hoʻoilina i ka hana o kā mākou mau pūnaewele. Ua ʻike nā kānaka noiʻi e hiki i nā loli (nā hoʻololi ʻana) i kekahi mau hoʻoilina ke kumu i kēia maʻi.

2. Nā maʻi: E noʻonoʻo i ka mea e hana ʻia ke loaʻa i ko mākou kino kahi maʻi koʻikoʻi. Hoʻomākaukau kā mākou ʻōnaehana pale e kaua. ʻO ia hoʻi, hoʻomaka ko mākou iwi iwi e hana i nā hunaola koko keʻokeʻo, ʻoiai nā lymphocytes, me ka wikiwiki. Ua like ia me kahi hale hana e hoʻonui koke ana i ka hana ʻana. Ke hana ʻoe i kēlā wikiwiki, i kekahi manawa hiki ke hana hewa. Pēlā e hiki ai ke hana hewa i ka DNA o nā hunaola, e hoʻonui ana i ka manawa kūpono o ka ulu ʻana o nā hunaola kanesa.

ʻO wai ka mea i pilikia nui i ka loaʻa ʻana o kēia maʻi?

He mau mea pilikia wale nō kēia. ʻAʻole nā ​​​​mea a pau i loaʻa iā lākou e loaʻa i ka maʻi.

• No nā poʻe ma luna o 50 mau makahiki .
• ʻOi aku ka nui o ka pilikia o nā kāne ma mua o nā wahine.
• No nā poʻe me nā ʻōnaehana pale kino nāwaliwali (no ka laʻana, ka poʻe i loaʻa nā hoʻoili kino).
• Wahi a kekahi mau noiʻi, he poʻe o ka ʻApelika.

Pehea e ʻike ai ke kauka i kēia?

Ke ʻike ʻoe i ke kauka no kahi pilikia ʻili, e nīnau mua ʻo ia iā ʻoe e pili ana i kāu mau hōʻailona. A laila e nānā pono lākou i kou ʻili. Eia nō naʻe, no ka hōʻoia ʻana inā he CTCL kou, pono kekahi mau hoʻokolohua.

He aha nā lāʻau lapaʻau no CTCL?

Hoʻomaʻamaʻa ʻia ʻo CTCL ma muli o ke ʻano, ke kahua, a me kou olakino holoʻokoʻa. ʻAʻohe lāʻau lapaʻau hoʻokahi e kūpono i nā mea āpau. Na kāu kauka e hoʻomohala i kahi hoʻolālā lapaʻau e kūpono loa iā ʻoe.

• Nā kirīmi a me nā ʻaila i hoʻopili ʻia i ka ʻili: ʻO kēia nā kirīmi i loaʻa nā lāʻau lapaʻau e like me nā steroid. Ua lawa paha kēia no nā maʻi i nā wā mua.
• Hoʻōla kukui (Phototherapy): Ke kuhikuhi ʻia nei kahi ʻano kūikawā o ke kukui ultraviolet (UV) i ka ʻili e luku i nā hunaola kanesa.
• ʻO ka photopheresis extracorporeal (ECP): He ʻano paʻakikī iki kēia. Maanei, lawe ʻia kekahi o kou koko, hoʻokomo ʻia ma o kahi mīkini, kahi e mālama ʻia ai me kahi lāʻau lapaʻau a me ke kukui e mālama i nā hunaola kanesa, a laila hoʻokomo hou ʻia i loko o kou kino.
• Lapaʻau radiation: Hoʻohana ʻia nā kukuna ikehu kiʻekiʻe e luku i nā hunaola kanesa i loko o ka ʻili.
• Immunotherapy: Hāʻawi mākou i nā lāʻau lapaʻau e hoʻoulu ai i kā mākou ʻōnaehana pale ponoʻī a hoʻoikaika iā ia e hakakā i nā hunaola kanesa.
• Chemotherapy: Nā lāʻau lapaʻau ikaika e pepehi i nā hunaola kanesa. Hiki ke hāʻawi ʻia kēia mau mea ma ke ʻano he mau pila a i ʻole nā ​​inikini.

Pehea lā ke ʻano o ke ola me kēia maʻi?

ʻO kēia ka nīnau nui loa ma ka noʻonoʻo o kēlā me kēia kanaka. ʻO ka hapa nui o nā ʻano CTCL e ulu lohi loa. No laila, ʻaʻole lākou e hoʻoweliweli i ke ola. ʻOiai ʻaʻole hiki i nā kauka ke ho'ōla piha i kēia maʻi, hiki i ka lāʻau lapaʻau ke hoʻomalu pono i nā hōʻailona.

Akā, pono nō hoʻi kākou e hoʻomaopopo i ka ʻoiaʻiʻo. E like me nā maʻi kanesa āpau, hiki i ka CTCL ke make inā hiki i nā pae holomua.

Ua hōʻike ʻia nā noiʻi he 9 mai loko mai o 10 mau kānaka i ʻike ʻia me ka maʻi i kona mau pae mua (nā pae I a i ʻole II) e ola mau ana ma hope o 10 mau makahiki. ʻO ia ka 90% o ka nui o ke ola. No ka poʻe me ka maʻi holomua, ʻo ka helu he 53% wale nō. He mau helu wale nō kēia. ʻO ke kanaka maikaʻi loa e ʻike pono i kou kūlana, ʻo ia kāu kauka.

Pehea e hiki ai iā kākou ke mālama i ko kākou ʻili a hōʻemi i ka pilikia?

ʻAʻohe mea hiki iā kākou ke hana e pale aku i ka CTCL, ʻoiai ʻaʻole hiki ke hoʻololi ʻia nā mea pilikia e hoʻopilikia ai. Akā, ʻo ka mālama ʻana i ko kākou ʻōnaehana pale kino he mea maikaʻi ia no nā maʻi āpau.

Eia kekahi, inā loaʻa iā ʻoe ka CTCL, he mea nui loa ia e mālama i kou ʻili.

• E mālama i kou ʻili i ka hoʻomaʻū ʻia: E hoʻohana i kahi moisturizer maikaʻi ma hope o ka ʻauʻau ʻana a i ke ao holoʻokoʻa. E kōkua kēia i ka hōʻemi ʻana i ka maloʻo, ka ʻili ʻana, a me ka maneʻo.
• E pale iā ʻoe iho mai nā maʻi ʻili: E hoʻohana i nā kopa ʻala ʻole a me nā mea holoi lole. E ʻaʻahu i nā lole e uhi ana i kou ʻili i ka wā e hele ai i waho i ka lā, a e kau i ka sunscreen. E ʻaʻahu i nā lole ākea a hanu.
• Hoʻōki i ke kahakaha ʻana: ʻO ka maneʻo ka pilikia nui loa e kū nei i kēia mau maʻi. Ke kahakaha lākou, haki lākou i ka ʻili a hiki i ka bacteria ke komo, e hoʻoulu ai i nā maʻi. No laila, e kāohi i ke kahakaha ʻana i ka hiki. Hiki iā ʻoe ke loaʻa ka hōʻoluʻolu ma ka hana ʻana i nā mea e like me ka holoi ʻana me ka wai anuanu, ka ʻauʻau ʻana i ka wai oatmeal, a me ka hoʻohana ʻana i nā antihistamines i ʻōlelo ʻia e kāu kauka.

He aha nā manawa kūpono loa e ʻike ai i ke kauka?

Ke hoʻomaka ʻoe i ka lāʻau lapaʻau, pono e ʻike pinepine kāu kauka iā ʻoe. Akā inā loaʻa kekahi mea e like me kēia i kēia manawa, e kamaʻilio me kāu kauka.

• Inā ʻike ʻoe i kekahi mau loli hou i kou ʻili .
• Inā manaʻo ʻoe he maʻi ʻili kou (e.g., he ʻulaʻula, ʻeha, pehu, a i ʻole ke puka mai nei ka pehu).
• Inā loaʻa iā ʻoe ke kuni ma luna o 100.4 Fahrenheit (38 Celsius) .

ʻO ka maʻamau, ke loaʻa iā mākou kahi ʻulaʻula a i ʻole kahi mole ma ko mākou ʻili, manaʻo mākou he mea maʻamau ia. ʻAʻohe mea e manaʻo he maʻi kanesa laha ʻole e like me kēia. Akā ʻo ka mea nui loa, inā ʻike ʻoe i kahi loli i kou ʻili, mai hoʻowahāwahā iā ia a hōʻike iā ia i ke kauka. ʻAʻole paha he maʻi kanesa. Akā inā he maʻi kanesa ia, ʻo ka hoʻomaka koke ʻana i ka lāʻau lapaʻau ka mea maikaʻi loa hiki iā ʻoe ke hana no kou ola.