Loaʻa iā ʻoe ka maʻi ʻili? E aʻo kākou e pili ana i ka Cutaneous T-Cell Lymphoma (CTCL)!

Ke ʻike nei ʻoe i nā kiko, nā pehu, a i ʻole nā ​​wahi o ke kala ʻole o ke kala ma kou ʻili e ʻānai ana? I kekahi manawa manaʻo mākou he mau maʻi ʻili maʻamau wale nō kēia, e like me ka psoriasis a i ʻole ka eczema. Akā, ʻoiai he mea kakaikahi loa, aia paha kekahi mea ʻoi aku ka koʻikoʻi ma hope o kēia mau hōʻailona. ʻAe, ʻo kahi ʻano maʻi kanesa kakaikahi e hoʻopilikia ai i ka ʻili ua kapa ʻia ʻo Cutaneous T-Cell Lymphoma, a i ʻole CTCL. E kamaʻilio kākou e pili ana i ia mea me nā kikoʻī a me ka maʻalahi i kēia lā.

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

I ka ʻōlelo maʻalahi, he ʻano maʻi koko kakaikahi ʻo CTCL e hoʻopilikia ana i ka ʻili, ʻo ia ke kino nui loa o ko kākou kino. He ʻāpana ia o kahi hui nui o nā maʻi kanesa i kapa ʻia ʻo Non-Hodgkin Lymphoma. Hoʻomaka ia i loko o kahi ʻano keʻokeʻo koko i kapa ʻia ʻo Lymphocytes, ʻo ia hoʻi nā T lymphocytes.

Manaʻo ka poʻe he nui he mea e makaʻu ai ka maʻi kanesa. Eia nō naʻe, hoʻōla maikaʻi ka poʻe he nui me CTCL ma hope o ka mālama ʻana a hoʻi i ko lākou ola maʻamau. Eia nō naʻe, he mea maʻamau ke manaʻo iki ʻoe ua kaumaha ʻoe ke ʻike ʻoe he maʻi kanesa kou. Ua mākaukau kāu hui lapaʻau e kōkua iā ʻoe i kēia manawa.

He aha nā ʻano nui o CTCL?

ʻOiai aia kekahi mau ʻano o `(CTCL)`, aia ʻelua mau ʻano nui a mākou e ʻike nei:

1. ʻO Mycosis Fungoides (Mycosis Fungoides):

• ʻO kēia ke ʻano maʻamau o CTCL, a he ʻano maʻi kanesa ikaika loa ia . Ma kahi o ka hapalua o nā maʻi CTCL āpau no kēia ʻano.
• Hana ʻia kēia ke lilo nā pūnaewele i kapa ʻia ʻo "nā pūnaewele T" a i ʻole "nā lymphocytes T" i mau pūnaewele kanesa.
• ʻO ka mea pōmaikaʻi, ʻaʻole laha nui kēia mau hunaola kanesa ma waho o ka ʻili. Eia nō naʻe, i kekahi manawa hiki i kekahi o kēia mau hunaola ke hele i kou mau lymph nodes a me ke koko.
• Ke kaʻapuni kēia mau "T-cells" maʻi kanesa i loko o ke koko, kapa nā kauka iā lākou he "Sézary cells".

2. ʻO ka maʻi Sézary:

• He ʻano CTCL kēia e ulu wikiwiki ana . Ma kēia, hiki iā ʻoe ke ʻike i kahi nui o nā pūnaewele Sézary i loko o kou ʻili a me ke koko .
• I kekahi manawa, hiki i ke kūlana `(Mycosis Fungoides)` ke lilo i mea koʻikoʻi a lilo i `(Sézary Syndrome)`.
• ʻIke ka poʻe me kēia maʻi i ka loli ʻana o ke ʻano ma luna o ko lākou ʻili a pau.

Pehea ka maʻamau o kēia maʻi?

He mea kākaʻikahi loa nā Lymphomas T-cell ʻili. No ka laʻana, ma ʻAmelika Hui Pū ʻIa, ʻo ke ʻano maʻamau o CTCL, ʻo Mycosis Fungoides, ua manaʻo ʻia e hoʻopilikia i kahi o hoʻokahi i loko o hoʻokahi miliona mau kānaka. He mea kākaʻikahi nō hoʻi kēia maʻi ma Sri Lanka.

He aha nā hōʻailona o (CTCL)?

Hiki ke ʻokoʻa nā hōʻailona o CTCL mai kēlā kanaka a kēia kanaka. Eia nō naʻe, eia kekahi o nā hōʻailona maʻamau:

• Nā puʻupuʻu a i ʻole nā ​​​​​​pehu e kū mai ana ma ka ʻili, i kekahi manawa e pahū.
• Ka nalowale o ka lauoho.
• ʻO ke ʻano ʻili e pālahalaha ana ma ke kino holoʻokoʻa, maneʻo , e like me ka ʻulaʻula.
• Nā ʻano ʻili e like me ke kiko ma ka ʻili.
• He ʻulaʻula maneʻo e kū aʻe ana, i kekahi manawa he unahi, ma luna o ka ʻili.
• Nā ʻōpū lymph pehu.
• Ka mānoanoa o ka ʻili ma nā poho lima a me nā kapuwaʻi.

E noʻonoʻo, e ʻike koke ʻia kahi kiko ʻulaʻula liʻiliʻi ma kou lima a i ʻole kou wāwae, e ulu mālie ana, e ʻānai ana, a pahū paha i loko o nā pehu liʻiliʻi. A i ʻole e hoʻomaka ana kou lauoho e hāʻule i waho ma nā wahi me ke kumu ʻole. Inā ʻike ʻoe i kahi mea e like me kēia, mai hoʻokuke wale iā ia.

He aha nā kumu o (CTCL)?

ʻO ka mea ʻoiaʻiʻo, ʻo ka mea e hana ʻia ana i loko o ka `(Cutaneous T-cell Lymphoma)` ʻo ia ka loli ʻana o kā mākou mau `(T lymphocytes)` cell (`mutate`) a lilo i mau cell kanesa e māhelehele me ke kāohi ʻole ʻia. ʻAʻole maopopo i nā kauka ke kumu o ka ulu ʻana o `(CTCL)` , a i ʻole ke kumu e ulu ai kekahi poʻe. Eia nō naʻe, aia ʻelua mau mea i manaʻo ʻia he kuleana ko lākou:

1. Nā ʻano loli / mutations genetic: Ua ʻike nā kānaka noiʻi hiki i nā loli i kekahi mau genes ke kumu i kēia kūlana. ʻO ia hoʻi, hiki i nā loli liʻiliʻi i kekahi o nā genes i loko o ko mākou kino ke hoʻolilo i kēia mau cell i mau cell cancer .

2. Nā maʻi: Ke loaʻa iā ʻoe kahi maʻi, lilo kāu ʻōnaehana pale i mea hana nui. I ka pane ʻana, hoʻomaka kou iwi iwi e hana i nā lymphocytes hou aʻe. Ua like ia me kahi hale hana e hoʻonui ana i ka hana. Ke hana wikiwiki ʻoe, i kekahi manawa hiki ke hana hewa. Ua kapa ʻia kēia mau hewa he mau mutations DNA e hoʻopilikia i nā genes koʻikoʻi i loko o nā lymphocytes. I ka hopena, hiki i kēia ke alakaʻi i ka lymphoma.

He aha nā kumu pilikia no ka hoʻomohala ʻana (CTCL)?

ʻOi aku ka nui o ka loaʻa ʻana o kekahi poʻe i ka `(Cutaneous T-cell Lymphoma)`. ʻO lākou kēia:

• ʻOiai he ʻeleʻele. (ʻOiai he ʻike ʻepekema kēia, pono ka noiʻi hou aʻe e ʻike pehea e pili ai i nā ʻāina e like me kā mākou.)
• ʻOiai ma luna o 50 mau makahiki.
• Hoʻonāwaliwali ʻia ka ʻōnaehana pale maʻi.
• ʻOiai he kāne.

ʻAʻole ʻike nā kānaka a pau aia kēia mau ʻoiaʻiʻo, akā ʻo ke kumu, ʻoi aku ka kiʻekiʻe o ka pilikia.

Pehea e ʻike ʻia ai ka CTCL?

Inā kānalua ʻoe he CTCL kou, e lawe mua kāu kauka i kāu mōʻaukala olakino a hana i kahi hoʻokolokolo kino. E nānā pono lākou i nā kiko a me nā plaques ma kou ʻili. E nīnau lākou e pili ana i kāu mau hōʻailona a nīnau e pili ana i nā kūlana olakino ma mua āu i loaʻa ai.

Nā hoʻokolohua diagnostics

I mea e hōʻoia ai i ka maʻi o ka `(Cutaneous T-cell Lymphoma)`, pono ke kauka e hana i kekahi mau hoʻokolohua. ʻO nā mea nui:

• Nā hoʻāʻo koko: E nānā i nā pūnaewele Sézary a me nā mea ʻē aʻe i loko o ke koko.
• Nā hoʻāʻo kiʻi: Hoʻohana ʻia nā hoʻāʻo e like me nā scan CT a i ʻole nā ​​​​scan PET e ʻike ai inā ua pālahalaha ke kanesa i nā ʻāpana ʻē aʻe o ke kino.
• Lymph node biopsy: Lawe ʻia kahi hāpana liʻiliʻi mai kahi lymph node pehu a nānā ʻia.
• Biopsy ʻili: Lawe ʻia kahi ʻāpana ʻili liʻiliʻi mai kahi wahi i hoʻopilikia ʻia a nānā ʻia ma lalo o kahi microscope e ʻike inā he mau hunaola kanesa. ʻO kēia ka hoʻāʻo nui e ʻike ai i ka CTCL.

Nā Pae o CTCL

Hoʻohana nā kauka i nā ʻano hana like ʻole e hoʻokaʻawale, ʻike, a hoʻolālā i ka mālama ʻana no ke kanesa. ʻO ke ʻano maʻamau i hoʻohana ʻia e hoʻoholo ai i nā pae o CTCL ʻo ia ka ʻōnaehana hoʻokaʻawale TNM . Hōʻike kēia ʻōnaehana:

• T (Puʻupuʻu Mua): Kahi i hoʻomaka mua ai ke kanesa a me ka mamao o kona laha ʻana ma ka ʻili.
• N (Nā Node Lymph Kokoke): Inā ua pālahalaha ke kanesa i nā node lymph kokoke.
• M (Metastasis): Inā ua pālahalaha ke kanesa i nā ʻāpana mamao o ke kino (metastasized).

Hoʻohana kēia ʻōnaehana (TNM) i nā helu a me nā leka e haʻi i ke kahua kikoʻī o kāu (Cutaneous T-cell Lymphoma). Hiki ke paʻakikī iki kēia, no laila e wehewehe kāu kauka i kēia iā ʻoe.

Pehea e mālama ʻia ai ka CTCL?

ʻO ka mea pōmaikaʻi, aia kekahi mau ala e mālama ai iā CTCL. ʻO ka lāʻau lapaʻau maikaʻi loa e pili ana i kou kūlana.

• Nā kirimina steroid a i ʻole nā ​​​​​​mea ʻaila: Kōkua kēia i ka kaohi ʻana i nā hōʻailona ʻili.
• Hoʻōla kukui (Phototherapy): Kuhikuhi ʻia nā ʻano kukuna kukui kūikawā i ka ʻili e luku i nā hunaola kanesa.
• Extracorporeal Photopheresis (ECP): He ʻano paʻakikī iki kēia. I ka ʻōlelo maʻalahi, lawe lākou i kekahi o kou koko, kāwili pū me kahi lāʻau kūikawā, hōʻike iā ia i ka mālamalama ultraviolet, a laila hoʻokomo hou i loko o kou kino. Kōkua kēia i ka kaohi ʻana i nā hunaola kanesa.
• Lapaʻau radiation: Hoʻohana i nā kukuna ikehu kiʻekiʻe e luku i nā hunaola kanesa.
• Immunotherapy: Hoʻoulu i kāu ʻōnaehana pale ponoʻī e hakakā i nā hunaola kanesa.
• Kemokalama:Hāʻawi ʻia nā lāʻau lapaʻau e pepehi ai i nā hunaola kanesa. Hiki ke hāʻawi ʻia kēia ma ke ʻano he kirīmi, pila, a i ʻole ka inikini.

E hoʻomanaʻo, ʻaʻohe lāʻau lapaʻau hoʻokahi e kūpono i nā mea āpau. E haʻi aku kāu kauka iā ʻoe i nā koho lapaʻau maikaʻi loa no kou kūlana.

Hiki ke pale ʻia ka CTCL?

No ka mea, ʻo ka hapa nui o ka poʻe e loaʻa ana iā CTCL ʻaʻohe o lākou mau kumu pilikia hiki ke hoʻololi ʻia, ʻaʻohe mea hiki iā ʻoe ke hana e pale aku ai . Akā ke aʻo nei nā kānaka noiʻi i ke kumu o kēia mau kūlana.

Pehea e hiki ai iaʻu ke hōʻemi i koʻu pilikia?

ʻOiai ʻaʻole hiki iā ʻoe ke pale aku i ka Cutaneous T-cell Lymphoma, ʻo ka loaʻa ʻana o kahi ʻōnaehana pale palupalu hiki ke hoʻolilo iā ʻoe i mea maʻalahi i nā ʻano maʻi kanesa āpau, ʻaʻole wale ʻo CTCL. No laila, eia kekahi mau mea hiki iā ʻoe ke hana e hoʻomau i kou ʻōnaehana pale ikaika:

• E ʻai i nā huaʻai a me nā mea kanu he nui.
• E hoʻoikaika kino i nā manawa a pau .
• E hiamoe maikaʻi a lawa.
• E kaupalena i ka inu ʻana i ka waiʻona.
• E mālama i ke kaumaha olakino nou.
• E kāohi i ke kaumaha ma o nā ʻano hana e like me ka noʻonoʻo ʻana.
• E kiʻi i nā lāʻau pale e pono ai.
• Inā ʻoe e puhipaka ana, e hoʻāʻo e hoʻōki.
• E holoi pinepine i kou mau lima.

He aha ka wānana no nā kānaka me CTCL?

He ʻoluʻolu loa ka hapa nui o nā ʻano CTCL a ʻaʻole pinepine e hoʻoweliweli i ke ola . Eia nō naʻe, hiki i kekahi poʻe ke loaʻa i nā ʻano koʻikoʻi o ke ʻano. ʻOiai ʻaʻole hiki i nā kauka ke ho'ōla loa i ka CTCL, hiki i ka lāʻau lapaʻau ke kōkua i ka hoʻokele ʻana i nā hōʻailona.

Eia nō naʻe, e like me nā maʻi kanesa āpau, hiki i ka CTCL ke make i nā hihia holomua. ʻO ka wikiwiki o kou hoʻomaka ʻana i ka lāʻau lapaʻau, ʻoi aku ka maikaʻi o kou manawa kūpono e hoʻōla ai . No laila he mea nui e haʻi koke i ke kauka ke ʻike ʻoe i kekahi mau loli i kou ʻili.

He aha ka helu ola o (CTCL)?

90% o ka poʻe me ke kahua mua (kahua I a i ʻole II) CTCL e ola no 10 mau makahiki. ʻO ke ʻano kēia he ʻeiwa mai loko mai o ka ʻumi o ka poʻe me ke ʻano e ola mau ana ma hope o 10 mau makahiki. ʻO ka helu ola 10 makahiki no ka poʻe me ke kahua kiʻekiʻe (kahua III a i ʻole IV) CTCL ma kahi o 53%.

He mea nui: He mau kuhi wale nō nā helu ola. ʻAʻole lākou e haʻi pololei iā ʻoe i ka lōʻihi o kou ola ʻana a i ʻole pehea ʻoe e pane ai i ka lāʻau lapaʻau. E nīnau i kāu kauka no ka ʻike hou aku e pili ana i kēia.

Pehea wau e mālama ai iaʻu iho?

Ma muli o ka hoʻopilikia ʻana o ka Cutaneous T-cell Lymphoma i kou ʻili, hiki iā ia ke hana i ka ʻili ʻānai, maloʻo, a me ka ʻili ʻōpala. ʻOiai hiki i nā lāʻau lapaʻau ke kāohi i ka ulu ʻana o ke kanesa a hōʻemi i nā hōʻailona, ​​hiki i kekahi mau lāʻau lapaʻau ke hoʻolilo i kou ʻili palupalu i mea ʻoluʻolu ʻole. Hiki i kēia mau manaʻo ke kōkua:

• E mālama i kou ʻili i ka hoʻomaʻū ʻia: E kau i kahi kirīmi a i ʻole ka ʻaila poni i kou ʻili ma hope o ka ʻauʻau ʻana a i ʻole ka pulu ʻana e hoʻomau i ka hoʻomaʻū ʻia. He mea maikaʻi ke kau hou ʻana i ka kirīmi i ka lā a ma mua o ka hiamoe ʻana. ʻAʻole wale kēia e pale aku i kou ʻili, akā e hōʻemi pū ana hoʻi i ka maloʻo a me ka ʻili ʻana, kaohi i ka maneʻo, a kōkua i ka pale ʻana i kou ʻili mai nā maʻi.
• E pale i kou ʻili mai ka huhū: Ke loaʻa iā ʻoe ka CTCL, lilo kou ʻili i mea ʻeha loa. ʻOiai nā mea e like me ka hele ʻana i waho i ka lā, ka hoʻohana ʻana i kekahi mau mea holoi a me nā kopa, a me ke komo ʻana i kekahi mau ʻano lole hiki ke hoʻonāukiuki i kou ʻili. E koho i nā mea holoi a me nā holoi kino i ʻole i hoʻohui ʻia i kahi ʻala. E ʻaʻahu i nā lole e pale ai i kou ʻili mai ka lā, a e kau i ka sunscreen ke hele ʻoe i waho. E ʻaʻahu i nā lole ākea e hiki ai i kou ʻili ke hanu.
• Mai ʻānai i ka maneʻo: No nā kānaka he nui, he pilikia koʻikoʻi ka maneʻo mau e hiki ke hoʻopilikia i ko lākou ola maikaʻi. Hiki i ka ʻānai ʻana ke hoʻonāukiuki i ka ʻili, hiki ke alakaʻi i ka maʻi a me ke komo ʻana o ka bacteria i loko o ka ʻili. Hiki i nā ʻūlū anu (e like me nā ʻeke hau, nā ʻeke o nā mea kanu hau), nā ʻauʻau oatmeal, a me nā antihistamines ke kōkua i ka hōʻoluʻolu ʻana i ka maneʻo.

Āhea wau e ʻike ai i kaʻu kauka?

E makemake ana kāu kauka e nānā pinepine iā ʻoe. E nīnau iā ia i ka pinepine o kou hele ʻana mai no nā hoʻokolohua koko a i ʻole nā ​​hoʻokolohua ʻili.

I kēia hihia, e ʻike pono i kāu kauka:

• Inā ʻike ʻoe i kekahi mau loli hou i kou ʻili.
• Inā manaʻo ʻoe he maʻi ʻili kou.
• Inā piʻi ke kuni ma luna o 100.4 degere Fahrenheit (38 degere Celsius).

He mea maʻamau ka manaʻo ʻana i ka ʻili ʻulaʻula a i ʻole ka hoʻololi ʻana o ke kala he maʻi ʻili maʻamau. He mea paʻakikī hoʻi ke manaʻoʻiʻo he ʻano maʻi kanesa kakaʻikahi paha ke kumu. Eia nō naʻe, he mea nui e haʻi i kāu kauka inā ʻike ʻoe i kekahi mau loli i kou ʻili . A laila hiki iā lākou ke ʻike i ke kumu. ʻAʻole paha he maʻi kanesa. Akā inā he maʻi ia, ʻo ka lāʻau lapaʻau ke kī. ʻO ka wikiwiki o kou hoʻomaka ʻana i ka lāʻau lapaʻau, ʻoi aku ka maikaʻi o kou manawa e hoʻōla ai.

ʻO ka mea hope loa, leka lawe i ka home:

ʻOiai he maʻi ʻili laha ʻole ka Cutaneous T-Cell Lymphoma, he mea nui e makaʻala iā ia. Inā ʻike ʻoe i kekahi mau loli ʻē i kou ʻili, ka maneʻo mau, a i ʻole kahi wahi i hoʻōla ʻole ʻia, mai hoʻowahāwahā iā ia. E ʻimi koke i ke kōkua lapaʻau. Inā ʻike ʻia a mālama ʻia i ka wā mua, hiki iā ʻoe ke hoʻokele maikaʻi i kēia kūlana a ola i kahi ola maʻamau. Mai hopohopo, ʻaʻole ʻoe hoʻokahi. Aia nā kauka a me nā hui mālama ola e kōkua iā ʻoe.

ʻO CTCL, Kanesa ʻIli, Mycosis Fungoides, Sézary Syndrome, Lymphoma, Nā Hōʻailona ʻIli, Lapaʻau ʻana i ke Kanesa