He ʻeleʻele a ʻeleʻele paha nā ʻāpana ʻili o kāu keiki? (Juvenile Localized Scleroderma)

Ua ʻike anei ʻoe i kahi kiko ma ke kino o kāu keiki, ma ko lākou wāwae a ʻōpū paha, i loli koke ke kala a paʻakikī iki i ka pā ʻana? Ma ke ʻano he makua, ua manaʻo paha ʻoe i ka makaʻu a me ka hopohopo i kou ʻike ʻana. "He aha kēia? No ke aha i hana ʻia ai kēia?" Ua manaʻo paha ʻoe. Mai makaʻu. I ka hapanui o nā hihia, hiki ke hoʻokumu ʻia kēia ʻano ma muli o ka maʻi a mākou e kamaʻilio nei i kēia lā, ʻo 'Juvenile Localized Scleroderma'. ʻOiai he paʻakikī iki ka inoa, e kamaʻilio maʻalahi kākou e pili ana, ma ke ʻano hiki iā ʻoe ke hoʻomaopopo.

I ka ʻōlelo maʻalahi, he aha ka Juvenile Localized Scleroderma?

E hoʻomaka kākou me ka inoa. ʻO ka huaʻōlelo ʻo 'Scleroderma' ua hana ʻia me ʻelua mau huaʻōlelo Helene: ʻo "sclera" ʻo ia hoʻi 'paʻakikī', a ʻo "derma" ʻo ia hoʻi 'ʻili'. ʻO ia hoʻi "ʻili paʻakikī" . ʻO "Juvenile" no ka mea e loaʻa ia i nā keiki a me nā ʻōpio. ʻO "Localized" no ka mea ua kaupalena ʻia i nā wahi kikoʻī o ke kino, ʻo ia hoʻi ka ʻili, nā ʻiʻo ma lalo o ka ʻili, a i kekahi manawa nā ʻiʻo a me nā iwi. ʻO kekahi inoa no kēia ʻo 'Morphea'.

He maʻi autoimmune kēia. I ka ʻōlelo maʻalahi, hele iki ka ʻōnaehana pale o ko mākou kino, ʻo ia hoʻi ka ʻōnaehana pale, a hoʻomaka e hoʻouka i kona ʻili ponoʻī. I ka pane ʻana i kēia hoʻouka ʻana, hoʻomaka ka ʻili o ke keiki e pehu, a i ʻole e mumū.

ʻO kēia pehu ʻana ke kumu o nā pūnaewele pili i loko o ka ʻili e hana i ka nui o ka protein i kapa ʻia ʻo 'collagen' . ʻO 'Collagen' kahi mea e hāʻawi ai i ka ikaika a me ka paʻa i nā ʻiʻo he nui i loko o ke kino, me ko mākou ʻili. Akā i ka wā e hoʻonui nui ʻia ai, e like me kahi ʻeha ma hope o kahi ʻeha, mānoanoa ka ʻili a paʻakikī. Kāhea pū mākou i kēia 'fibrosis' . Hiki iā ʻoe ke ʻike i kēia ma ke kino o kāu keiki ma ke ʻano he wahi paʻakikī a ʻeleʻele e like me kēia.

He aha nā ʻano nui o kēia maʻi?

Aia kekahi mau ʻano nui o ka Localized Scleroderma. He ʻokoʻa iki nā hōʻailona o kēlā me kēia ʻano. E nānā kākou i ko lākou ʻano.

ʻO kahi ʻano kūikawā: "En coup de sabre"

He ʻano ʻano kēia o 'Linear Morphea'. Ke loaʻa i kahi keiki kēia mau kiko e like me ke kaha ma ko lākou maka a i ʻole ke poʻo, kapa mākou i ke ʻano "en coup de sabre." He huaʻōlelo Farani kēia ʻo ia hoʻi "me he mea lā ua ʻoki ʻia e ka pahi kaua." No ka mea, ua like ia me kahi laina i hoʻololi ʻia ke kala, i kekahi manawa ua piholo i lalo o ka lae.

He aha nā hōʻailona e hōʻike nei ke keiki?

Hiki ke loli kēia mau hōʻailona i ka hala ʻana o ka manawa. Hiki ke hoʻomaka me kahi wahi liʻiliʻi e like me kahi palapū.

• Ke kahua mua: ʻIke ʻia kahi ʻāpana ʻulaʻula a poni paha ma ka ʻili o ke keiki. I kēia kahua, ʻaʻole paʻakikī ka ʻili a manaʻo ʻia he maʻamau.
• Kahua waena: I ka hala ʻana o ka manawa, lilo ka kiko i paʻakikī, pehu, a nui iki aʻe. Lilo ke kikowaena o ka kiko i keʻokeʻo a melemele paha, waxy, a ʻālohilohi. Aia paha he halo poni a poni paha a puni.
• Ma hope: I ka hala ʻana o ka manawa, ma hope o ka emi ʻana o ka mumū, hiki i ka ʻili i hoʻopilikia ʻia ke lilo i ʻeleʻele (hyperpigmented) a i ʻole keʻokeʻo (hypopigmented). I kekahi manawa hiki ke lahilahi ka ʻili.

I nā hihia koʻikoʻi, hiki i kēia mau wahi ke hoʻopili i nā ʻiʻo hohonu, e hana ana i nā hōʻailona e like me:

• ʻEha a me ka ʻoluʻolu ʻole.
• ʻAʻole hiki ke hoʻoneʻe pono i nā lālā a me nā ʻiʻo.
• Inā loaʻa ia ma ka maka, hiki iā ia ke hana i nā pilikia me nā niho a i ʻole ka ʻike maka.

No ke aha e ulu ai kēia i nā keiki?

ʻO kaʻoiaʻiʻo, ʻaʻole i loaʻa ke kumu kikoʻī o kēia , akā manaʻoʻiʻo nā kauka he hui pū ʻana o nā kumu.

ʻO ka mea nui, e like me kā mākou i ʻōlelo ai ma mua, ʻo ia ka hoʻoulu ʻana o ka ʻōnaehana pale . Eia kekahi, ua manaʻo ʻia kekahi mau mea pili i ke kaiapuni, no ka laʻana, kahi maʻi, kahi ʻeha i ka ʻili, a pēlā aku, ʻo ia ke kumu o kēia maʻi. Akā, ʻaʻole kēia he maʻi lele.

Pehea e ʻike ai ke kauka i kēia?

Ke lawe ʻoe i kāu keiki i ke kauka, ʻo ka mea mua āna e hana ai, ʻo ia ke nānā pono i ke keiki a nīnau iā ʻoe e pili ana i nā hōʻailona. Hiki iā ʻoe ke kuhi pinepine inā he 'Localized Scleroderma' kēia ma ka nānā ʻana i ke ʻano o nā kiko ma ka ʻili.

No ka hōʻoia ʻana i ka maʻi diagnostic, pono paha ʻoe e hana i nā hoʻokolohua e like me kēia:

• Biopsy ʻIli: Pili kēia i ka lawe ʻana i kahi ʻāpana liʻiliʻi loa o ka ʻili i hoʻopilikia ʻia a nānā iā ia ma lalo o kahi microscope. Hiki iā mākou ke ʻike pono i nā loli i hana ʻia i loko o nā ʻili.
• MRI scan (Magnetic Resonance Imaging): Hiki i kēia ke ʻike i ka hohonu o ka ʻeha o ka ʻili a inā paha ua hoʻopilikia ʻia nā ʻiʻo a i ʻole nā ​​​​iwi ma lalo.

He aha nā lāʻau lapaʻau no kēia?

ʻO nā pahuhopu nui o ka mālama ʻana, ʻo ia ke kāohi i ka pehu ʻana (inflammation) i loko o ka ʻili, ke kāohi ʻana i ka maʻi mai ka laha hou ʻana, a me ka hoʻēmi ʻana i ka scarring (fibrosis) o ka ʻili. Aia ka mālama ʻana i ke ʻano a me ke koʻikoʻi o ka maʻi i ke keiki.

Aia kekahi mau koho lapaʻau:

• Corticosteroids: Hiki ke hāʻawi ʻia kēia mau mea ma ke ʻano he kirīmi topical, nā papa waha, a i ʻole nā ​​​​inikini intravenous.
• Nā ʻano kirīmi ʻē aʻe no ka ʻili: Nā kirīmi i loaʻa nā lāʻau lapaʻau e like me 'Calcipotriene', 'tacrolimus', 'pimecrolimus'.
• Nā mea hoʻololi i ka pale ʻana i ka maʻi: Inā ʻoi aku ka koʻikoʻi o ka maʻi, hāʻawi ʻia nā lāʻau lapaʻau e like me 'Methotrexate' a i ʻole 'Mycophenolate Mofetil' e kaohi i ka hana nui o ka ʻōnaehana pale.
• Hoʻōla kino a me ka lomilomi: He mea nui loa kēia no ka hoʻoikaika ʻana i nā ʻiʻo a mālama i ka neʻe maikaʻi ʻana o nā hono, ʻoiai i nā kūlana e like me 'Linear Morphea'.
• Hoʻōla kukui (Phototherapy):Hoʻohana kēia lāʻau lapaʻau i nā kukuna ultraviolet e palupalu i nā kiko ʻeleʻele ma ka ʻili. Eia nō naʻe, hiki i kēia ke hana i ka ʻelemakule ʻana o ka ʻili a i ʻole ke kanesa ʻili, no laila e wehewehe pono ke kauka i kēia.
• ʻO ke ʻoki kino: Ke pau loa ka hana ʻana o ka maʻi, hiki ke hana ʻia ke ʻoki kino e hoʻihoʻi i ke ʻano o ka ʻili.

Pehea ʻoe e kōkua ai i kāu keiki ma ke ʻano he makua?

Ma waho aʻe o nā lāʻau lapaʻau, aia kekahi mau mea hiki iā ʻoe ke hana ma ka home e pale i ka ʻili o kāu pēpē.

• E hōʻalo i ka hoʻohana ʻana i nā kopa a me nā mea holoi ʻino: ʻO nā huahana i loaʻa nā ʻala kaumaha e hiki ke hoʻomaloʻo a ʻeha ka ʻili o kāu pēpē.
• E hoʻohana i kahi moisturizer ʻili maikaʻi: E kau i kahi moisturizer maikaʻi i kūpono no ka ʻili koʻikoʻi i nā manawa he nui i ka lā.
• E ʻauʻau i ka wai mehana: E pale i ka wai wela a anuanu paha.
• E pale iā ʻoe iho mai ka lā: E hōʻoia e kau i kahi sunscreen maikaʻi i ka wā e hele ai i waho.
• E mālama i ka haʻahaʻa i loko o kou home: Inā maloʻo ka ea, hiki i ka hoʻohana ʻana i kahi humidifier ke kōkua i ka pale ʻana i ka ʻili maloʻo.

Pehea ka hopena o kēia kūlana i ke ola o ke keiki?

ʻOiai paha e hoʻoweliweli paha kēia iā ʻoe, ʻo ka ʻoiaʻiʻo, hiki i nā keiki me Juvenile Localized Scleroderma ke ola i nā ola maʻamau .

ʻAʻohe mea keakea no ke keiki e hele i ke kula, pāʻani me nā hoaaloha, pāʻani haʻuki, a komo i nā hana ʻohana e like me ka mea maʻamau. ʻO ka ʻoiaʻiʻo, he mea maikaʻi ka hoʻoikaika kino no ka mea e hoʻoikaika ai i nā ʻiʻo. ʻAʻohe pono no nā meaʻai a me nā mea inu kūikawā, ʻo ka hāʻawi wale ʻana i kahi meaʻai maikaʻi a kaulike hoʻi ua lawa ia.

I kekahi manawa, hiki i nā kiko ma ka ʻili ke hoʻoluhi iki i ke keiki a hilahila i ka nohona. I ia mau hihia, ʻo kāu kuleana ma ke ʻano he makua, ʻo ke kamaʻilio me ke keiki me ke aloha, e hoʻomaopopo iā ia ʻaʻole kēia kona hewa, a kūkulu i kona hilinaʻi iā ia iho.