He aha ka Langerhans Cell Histiocytosis (LCH)? Aia kāu keiki liʻiliʻi i ka pilikia?

Ua lohe paha ʻoe i ka Langerhans Cell Histiocytosis, a i ʻole ka mea a mākou e kapa nei he LCH no ka pōkole? Malia paha he ʻano paʻakikī a weliweli ka inoa. Akā ʻo ka ʻoiaʻiʻo, he maʻi laha ʻole kēia e hoʻopilikia nui ana i kā mākou mau keiki ʻōpio, ʻoi aku hoʻi nā pēpē hānau hou a me nā keiki ma lalo o 15 mau makahiki. No laila, mai hopohopo, e kamaʻilio maʻalahi kākou e pili ana i ia mea, ma ka ʻōlelo Sinhala hiki iā ʻoe ke hoʻomaopopo maikaʻi loa, me nā kikoʻī, me he mea lā e kamaʻilio ana ʻoe me kahi hoaaloha pili.

He aha maoli nō (LCH)?

I ka ʻōlelo maʻalahi, ʻo (LCH) kahi kūlana e kū mai ana i ka wā e loaʻa ai i ke kino o ke keiki ka nui o nā cell Langerhans, kahi ʻano cell kūikawā i loko o kā mākou ʻōnaehana pale. ʻO kēia mau cell Langerhans he ʻano cell koko keʻokeʻo. ʻO kā lākou hana nui ka hakakā ʻana i nā germs e komo i loko o ko mākou kino a pale iā mākou mai nā maʻi.

ʻIke pinepine ʻia kēia mau pūnaewele ma loko o ko kākou kino, ʻoiai ma ka ʻili, nā māmā, nā lymph node, ka iwi ʻiʻo, ka spleen, a me ke ake. Eia nō naʻe, i ke ʻano o (LCH), hōʻiliʻili nui kēia mau pūnaewele Langerhans ma kahi a ʻoi aku paha. Ke hana ʻia kēia, hiki ke hōʻino ʻia kēia mau ʻōkana a hiki ke hana ʻia nā ʻeha.

Hiki ke ʻokoʻa ke ʻano o ka maʻi mai kēlā kanaka a kēia kanaka. Hoʻōla loa kekahi mau keiki mai ka maʻi me ka mālama kūpono. ʻO ka mea kupanaha, i kekahi manawa, ʻoiai inā pili wale ia i ka ʻili, hiki ke hoʻomaikaʻi me ka ʻole o ka mālama ʻana. Eia nō naʻe, inā pili ke kūlana (LCH) i nā ʻōpū koʻikoʻi e like me ka iwi iwi o ke keiki, ka spleen a i ʻole ke akepaʻa, pono paha ka mālama koʻikoʻi.

He maʻi ʻaʻai anei (LCH)?

He nīnau kēia a ka poʻe he nui. ʻO ka ʻoiaʻiʻo, manaʻo ka hapa nui o nā kānaka noiʻi he maʻi kanesa ʻo LCH, ʻo ia hoʻi, he neoplasm. Eia nō naʻe, manaʻo kekahi poʻe ʻepekema i kēia manawa he maʻi mumū ia. Eia nō naʻe, he mau kauka loea nā oncologists i ka maʻi kanesa a me nā maʻi koko. I kekahi manawa, hoʻohana ʻia nā lāʻau lapaʻau kanesa, e like me ka chemotherapy, e mālama i ke kūlana.

ʻO wai ka mea i hoʻopilikia nui ʻia e kēia kūlana (LCH)?

ʻO ka LCH ka mea maʻamau i nā pēpē hānau hou a me nā keiki ma waena o nā makahiki 1 a me 15. He mea kākaʻikahi loa ka LCH i nā pākeke, akā ʻaʻole hiki ʻole.

Pehea ka maʻamau o kēia?

Wahi a nā helu helu, hoʻokahi a ʻelua paha o kēlā me kēia miliona o nā pēpē hānau hou e hoʻopilikia ʻia e LCH i kēlā me kēia makahiki. Eia kekahi, ma kahi o ʻelima o kēlā me kēia miliona mau keiki ma lalo o 15 mau makahiki e hoʻopilikia ʻia. No laila hiki iā ʻoe ke ʻike he maʻi laha ʻole kēia.

He aha nā hōʻailona o (LCH)?

ʻOkoʻa loa nā hōʻailona o LCH mai kēlā kanaka a kēia kanaka. Hiki iā ia ke hoʻopilikia i hoʻokahi wale nō wahi o ke kino, a i ʻole hiki ke hoʻopilikia i nā wahi he nui. No laila, pili nā hōʻailona i ka ʻāpana o ke kino o ke keiki i hoʻopilikia ʻia.

Inā pilikia nā iwi:

Ma kahi o 80% o nā keiki me LCH e loaʻa nā ʻeha ma kekahi a ʻoi aku paha o ko lākou mau iwi. He aha ke kumu o kēia?

• Hiki ke ulu aʻe kahi pehu a puʻupuʻu paha ma nā wahi e like me ke poʻo, nā iwi a puni nā maka, nā iwi pepeiao, nā iwi ʻauwae, nā lālā, ke kuamoʻo, nā pūhaka, a i ʻole nā ​​iwi ʻaoʻao. Hiki ke ʻeha kēia pehu a nalowale paha.
• ʻEha poʻo.
• ʻEha ʻāʻī a i ʻole ke kua.
• Nā haki.
• Ka paʻakikī o ka hele wāwae.
• Ke ʻōʻopaʻa nei.

Ma ka ʻili:

ʻIke pinepine ʻia nā ʻōpala ma ke ʻano he hōʻailona o ka maʻi ʻili (LCH).

• I nā pēpē ʻōpio, e ʻike ʻia paha kahi ʻulaʻula e like me ke kapa cradle cap ma ke poʻo.
• I nā keiki ʻōpio a me nā pākeke, hiki ke hana i kahi ʻulaʻula ʻōpala e like me ka dandruff.
• Hiki ke ʻike ʻia kēia mau ʻōhū ma nā wahi ʻē aʻe o ke kino (ʻūhā, lima, ʻāʻī, ʻōpū, kua, umauma). Hiki ke ʻeha, maneʻo, a paʻakikī paha.
• Hiki i kekahi mau keiki ke loaʻa i nā pehu e kahe ana.
• Hiki ke ʻike ʻia nā mea e like me ka hoʻololi ʻana o ke kala, ka paʻakikī, a i ʻole ka ʻili ʻana o nā kui.

E pili ana i ka waha:

ʻO nā hōʻailona e ʻike ʻia i loko o ka waha:

• Ka hemo ʻana o nā niho a i ʻole ka nalowale ʻana o nā niho.
• Niho i huki ʻia.
• Ka pehu ʻana o nā ʻāʻī.
• Nā ʻeha ma nā lehelehe, ke alelo, ma loko o nā papālina, a i ʻole ma luna o ka lehelehe.

Pili i ke akepaʻa a i ʻole ka spleen:

Inā hoʻopilikia ʻia kēia mau ʻōpū, nā hōʻailona e like me:

• Pehu ʻōpū ma muli o ka hoʻonui ʻia ʻana o ke akepaʻa a me/a i ʻole ka spleen.
• Melemele o ka ʻili a me nā keʻokeʻo o nā maka (jaundice).
• ʻŌhūhū.
• Luhi.
• ʻEha maʻalahi a/a i ʻole ke kahe ʻana o ke koko.

Inā pilikia ka iwi iwi:

ʻO ka iwi iwi kahi e hana ʻia ai nā hunaola koko. Inā pilikia ia:

• ʻAʻohe anemia, ʻili keʻokeʻo, luhi, a me ka nalowale o ka makemake e ʻai ma muli o ka emi ʻana o nā hunaola koko ʻulaʻula.
• Nā maʻi pinepine a me ke kuni ma muli o ka haʻahaʻa o nā hunaola koko keʻokeʻo.
• ʻO ka maʻalahi o ka palapū a/a i ʻole ke kahe ʻana o ke koko ma muli o ka haʻahaʻa o nā platelets.

ʻŌnaehana Endocrine (ʻŌnaehana Endocrine - Nā Hormones):

Hiki i ka LCH ke hoʻopilikia i ka ʻōnaehana endocrine o ke keiki, kahi e hana ʻia ai nā hormones, e like me ka pituitary gland a me ka thyroid gland.

• Inā pilikia ka ʻōpū pituitary: ka make wai nui (polydipsia) a me ka mimi pinepine ʻana (i kapa ʻia hoʻi he diabetes insipidus), ka holomua ʻole o ka ulu ʻana, ka wā ʻōpiopio mua a lohi paha, a me ka piʻi ʻana o ke kaumaha.
• Inā pilikia ka ʻōpū thyroid: ka pehu ʻana o ka ʻōpū thyroid, nā hōʻailona o ka haʻahaʻa o ka hormone thyroid (hypothyroidism), a me ka paʻakikī o ka hanu ʻana.

E pili ana i nā pepeiao:

• Nā maʻi pepeiao pinepine.
• Ke kahe nei ka wai mai nā pepeiao.
• ʻUlaʻula.
• ʻŌhūhū ʻāʻī.
• ʻEha pepeiao.
• Ka nalowale o ka lohe.

E pili ana i nā maka:

• Nā maka ʻōhū.
• Ka pehu ʻana ma luna o nā maka.
• Nā pilikia ʻike.

Nā Pūnaehana Lymph:

• Nā kōpili lymph pehu a ʻeha hoʻi ma ka ʻāʻī, nā ʻāpana lima, a me/a i ʻole ka ʻūhā.

ʻŌnaehana Nervous Waena:

ʻO ke ʻano kēia ua hoʻopilikia ʻia ka lolo a me/a i ʻole ke kaula kuamoʻo.

• ʻEha poʻo.
• Pōʻaiʻī.
• Ka luaʻi ʻana.
• Ka makewai nui.
• Ka mimi pinepine ʻana.
• Ka paʻakikī o ka hele wāwae.
• Ka nalowale o ke kaulike.
• ʻAʻole hiki ke kāohi i nā neʻe ʻana o ke kino (ataxia).
• Paʻakikī i ka ʻōlelo ʻana a i ʻole ka ʻike ʻana.
• Nā ʻōʻili.
• Nā loli i ke ʻano a me/a i ʻole ka hoʻomanaʻo.

Nā māmā:

ʻO ka LCH pulmonary, kahi maʻi e hoʻopilikia ai i nā māmā, ka mea maʻamau i nā pākeke. ʻO ka poʻe puhipaka ka poʻe i pilikia nui.

• ʻEha ka umauma.
• ʻŪhū maloʻo.
• Paʻakikī ka hanu ʻana.
• Ke ʻū ʻana i ke koko.
• Ka hāʻule ʻana o ka māmā (pneumothorax).

ʻŌnaehana ʻōpū:

Inā pilikia ka ʻōpū o ke keiki, ka ʻōpū liʻiliʻi, a me/a i ʻole ka ʻōpū nui:

• ʻEha ʻōpū.
• Ka luaʻi ʻana.
• Ka maʻi pākī.
• Koko i loko o ka ʻōpala.
• Ka holomua ʻole o ka ulu ʻana ma muli o ka ʻai ʻole.

He mea nui: Hiki ke hana ʻia kēia mau hōʻailona e kekahi mau kūlana ʻē aʻe, ʻaʻole wale ʻo LCH. No laila, inā loaʻa i kāu keiki kēia mau hōʻailona, ​​​​he mea nui e ʻimi koke i ke kōkua lapaʻau no kahi hōʻoia kūpono.

He aha nā kumu o (LCH)?

Ma kahi o ka hapalua wale nō o ka poʻe me LCH he loli somatic i loko o kahi gene i kapa ʻia ʻo BRAF. ʻO nā loli somatic nā loli e kū mai ana i loko o kekahi mau cell ma hope o ka hāpai ʻana. ʻAʻole lākou i hoʻoilina ʻia mai nā mākua mai, akā kū maoli ʻole i ka wā o ka ulu ʻana o ka embryo.

Hoʻopuka ka gene (BRAF) i kahi protein e kāohi ana i ka ulu ʻana a me ka ulu ʻana o nā cell. ʻO ka maʻamau, hiki ke hoʻā a hoʻopau ʻia kēia protein e like me nā hōʻailona kemika. Eia nō naʻe, i ka wā e loaʻa ai kahi mutation i loko o kēia gene, ua paʻa mau ka protein i ke kūlana "on". ʻO kēia ke kumu o ka ulu ʻana o nā cell (LCH) a māhele nui ʻia. ʻO kēia ke kumu o ka hōʻino ʻana o nā ʻiʻo a me ka hana ʻana o nā tumors.

Ua ʻike pū nā kānaka ʻepekema he hiki i nā mutations i loko o kekahi mau genes ʻē aʻe ke kumu o ka maʻi. No ka laʻana, ʻo nā genes (MAP2K1), (RAS), a me (ARAF). Manaʻo kekahi poʻe noiʻi e hiki i nā mea ʻawahia o ke kaiapuni a me nā maʻi viral ke kōkua pū i ka maʻi.

He aha nā kumu pilikia no (LCH)?

Hiki i kekahi mau mea ke hoʻonui i ka pilikia o kāu keiki i ka loaʻa ʻana o LCH. ʻO kēia mau mea:

• Loaʻa kahi moʻolelo ʻohana o LCH.
• Loaʻa ka lāhui Hispanic (ʻoiai ʻaʻole pili kēia i ko mākou ʻāina, ua ʻōlelo ʻia ma nā kumu).
• ʻO ka puhi paka (ʻoi aku hoʻi no nā pākeke me ka maʻi kanesa māmā (LCH)).
• Ka ʻike ʻia ʻana i kekahi mau kemika i ka wā hāpai.
• Ka ʻike ʻia ʻana i ka metala, ka granite, a i ʻole ka lepo lāʻau ma kahi hana.
• Nā maʻi i ka wā hānau hou.
• ʻAʻole i loaʻa nā lāʻau pale i ʻōlelo ʻia i ka wā kamaliʻi.

He aha nā pilikia e hiki mai ana o (LCH)?

Ma kahi o 50% o nā keiki me LCH e loaʻa i nā pilikia like ʻole ma muli o kēia kūlana. Eia kekahi laʻana:

• Ka ʻōpala.
• Ka lohi o ka ulu ʻana.
• Ke kīnā o nā ʻiʻo a me nā iwi.
• ʻO kahi maʻi e like me ka maʻi diabetes (Diabetes insipidus).
• Nā hemahema o ka hormonal.
• Ka hemahema o ka lohe.
• Nā pilikia olakino noʻonoʻo (e like me ke kaumaha, ka hopohopo).
• Nā pilikia iwi a me nā māmā.
• ʻO ka maʻi ʻaʻai.
• Nā maʻi ʻaʻai lua (e.g. leukemia, lymphoma, Ewing sarcoma).

Pehea e ʻike ʻia ai ka LCH?

E nīnau mua ke kauka o kāu keiki e pili ana i ka mōʻaukala olakino o kāu keiki a hana i kahi hoʻokolokolo kino. A laila, e kauoha lākou i kekahi mau hoʻokolohua ma muli o nā hōʻailona e ʻike nei kāu keiki. Ma muli o nā hopena o kēia mau hoʻokolohua, hiki ke kuhikuhi ʻia kāu keiki i kahi hematologist/oncologist pediatric, nāna e hoʻonohonoho i ka mālama ʻana a me ka mālama ʻana i kāu keiki.

He aha nā hoʻokolohua e hana ʻia no ka hōʻoia ʻana?

Ma muli o ka hiki i ka LCH ke hoʻopili i nā ʻāpana like ʻole o ke kino, pono e hoʻāʻo ʻia kekahi mau hoʻokolohua e ʻike pololei i ka maʻi.

• Nā hoʻāʻo koko:
• Helu koko piha (CBC): Nānā kēia i nā pae koko ʻulaʻula o ke keiki, nā koko keʻokeʻo, a me nā platelet.
• Nā hoʻāʻo kemika koko: Nānā kēia i nā pae o kekahi mau mea i hoʻokuʻu ʻia e nā ʻōpū a me nā ʻiʻo o ke kino.
• Nā hoʻāʻo hana ate: Nānā kēia i nā pae o nā mea i hoʻokuʻu ʻia e ke akepaʻa.

• Nā hoʻāʻo mimi:
• Urinalysis: Nānā ʻia ka nui o nā hunaola koko ʻulaʻula, nā hunaola koko keʻokeʻo, ka protein, a me ke kō i loko o ka mimi o ke keiki.
• Hoʻāʻo nele i ka wai: Hoʻāʻo kēia i ka nui o ka mimi ʻana o ke keiki a inā paha e paʻa ka mimi ke hāʻawi ʻole ʻia ka wai.

• Nā Biopsies:
• Biopsy: Lawe ke kauka i kahi hāpana ʻiʻo, a nānā ke kauka ma lalo o kahi microscope e nānā i nā pūnaewele LCH.
• ʻO ka ʻume ʻana i ka iwi a me ka biopsy: Hoʻohana ʻia kahi nila hakahaka e wehe i ka iwi, ke koko, a me kahi ʻāpana iwi liʻiliʻi mai ka iwi ʻūhā o ke keiki. Nānā ʻia kēia e kahi pathologist.

• Hoʻāʻo hoʻoilina:
• Hoʻohana ʻia kahi hāpana koko a ʻiʻo paha e nānā i nā loli i ka gene (BRAF).

• Nā hoʻāʻo kiʻi:
• Nā kukuna X: Lawe ʻia nā kiʻi o nā iwi a me nā ʻōkana o ke kino. I kekahi manawa hana ʻia kahi noiʻi iwi o ke kino holoʻokoʻa e ʻimi i nā ʻano ʻē.
• Nānā iwi: Hoʻokomo ʻia kahi mea radioactive i loko o kahi aa koko a hoʻohana ʻia kahi scanner e nānā i nā waihona ʻē aʻe i loko o nā iwi. ʻAʻole hoʻohana nui ʻia kēia i kēia manawa.
• CT scan (Computed tomography - CT scan): Hāʻawi ʻia ke keiki i kahi wai kūikawā e inu ai a i ʻole e hoʻokomo ʻia i loko o kahi aa koko, a lawe ʻia nā kiʻi kikoʻī mai nā kihi like ʻole i loko o ke kino.
• ʻO ka tomography hoʻokuʻu Positron (PET scan): Hoʻokomo ʻia kahi liʻiliʻi o ke kō radioactive (glucose) i loko o kahi aa koko, a hoʻoneʻe ʻia ka scanner a puni ke kino e kiʻi i nā kiʻi o kahi e hoʻohana ʻia ai ke kō. ʻIke ʻia nā ʻāpana maʻi me ka mālamalama ma kēia scan.
• MRI scan (Magnetic resonance imaging - MRI scan): Hoʻokomo ʻia kahi mea i kapa ʻia ʻo gadolinium i loko o kahi aa koko a lawe ʻia kekahi mau kiʻi kikoʻī me ka hoʻohana ʻana i nā magnet, nā nalu lekiō, a me kahi kamepiula. ʻIke ʻia nā wahi maʻi e ʻālohilohi aʻe.
• Ultrasound: Hoʻohana i nā nalu kani ikehu kiʻekiʻe e hana i nā kiʻi o loko o ke kino ma o ka hoʻihoʻi ʻana i nā leo mai nā ʻōpū a me nā ʻiʻo.

Pehea e mālama ʻia ai ʻo LCH?

ʻO ka lāʻau no LCH e pili ana i kahi o nā pūnaewele LCH i loko o ke kino o ke keiki a inā he "low-risk" a "high-risk" paha ka maʻi.

ʻO nā ʻōkana haʻahaʻa ka pilikia:

• ʻIli
• Iwi
• Nā māmā
• Nā kikowaena lymph
• ʻŌnaehana ʻōpū
• ʻO ke kelepa pituitary
• ʻO ke kele thyroid
• ʻO ka Timus

ʻO nā ʻōpū pilikia kiʻekiʻe:

• Ake
• ʻŌpū
• ʻIwi iwi
• ʻŌnaehana nerve waena (CNS)

Hoʻokaʻawale nā ​​kauka i ke kūlana (LCH) ma ke ʻano he "single-system LCH" a me "multi-system LCH." ʻO ke ʻano kēia:

• ʻŌnaehana hoʻokahi (LCH): Loaʻa nā pūnaewele LCH ma hoʻokahi wale nō ʻāpana o kahi ʻōkana hoʻokahi a ʻōnaehana kino paha. ʻO ke ʻano maʻamau ka LCH e hoʻopilikia wale ana i nā iwi.
• ʻŌnaehana Multisystem (LCH): Aia nā cell i loko o ʻelua a ʻoi aku paha nā ʻōkana, a i ʻole ma ke kino holoʻokoʻa (LCH). ʻAʻole kēia i maʻamau ma mua o ka ʻōnaehana hoʻokahi (LCH).

I kekahi mau hihia, ʻoiai nā mea e pili ana i ka ʻili a i ʻole nā ​​​​iwi wale nō (LCH), hiki ke hoʻopau ʻia ke kūlana me ka ʻole o ka lāʻau lapaʻau. I kēlā mau hihia, e nānā nā kauka i ka maʻi e ʻike inā e hoʻi mai a laha paha.

Nā Koho Lapaʻau (LCH):

• Lapaʻau steroid: Hiki i kāu kauka ke hoʻohana i nā steroid, e like me ka prednisone, ʻoi aku hoʻi no ka ʻili LCH. Hoʻemi kēia i ka hana o nā hunaola koko keʻokeʻo, hiki ke hoʻopilikia i nā hunaola LCH.
• ʻO ke ʻoki kino: Hiki ke wehe ʻia nā puʻupuʻu LCH a me nā ʻiʻo a puni ma ke ʻoki kino. ʻO ke kaʻina hana i kapa ʻia ʻo curettage e pili ana i ke kahakaha ʻana i nā pūnaewele LCH mai ka iwi me kahi mea ʻoi, e like me ka puna (curette).
• Kemoterapi: ʻO kēia ka hāʻawi ʻana i nā lāʻau lapaʻau i nā hunaola kanesa e kāohi i ko lākou ulu ʻana. Hoʻopau lākou i nā hunaola a i ʻole e kāohi iā lākou mai ka māhele ʻana. Lawe ʻia kēia mau lāʻau lapaʻau ma ka waha, hoʻokomo ʻia i loko o kahi aʻa a i ʻole ʻiʻo, a i kekahi manawa hoʻopili ʻia i ka ʻili ma ke ʻano he kirīmi.
• Lapaʻau radiation: Hoʻohana ʻia nā kukuna X-ikehu kiʻekiʻe a i ʻole nā ​​ʻano radiation ʻē aʻe e pepehi i nā hunaola kanesa a hoʻōki paha iā lākou mai ka ulu ʻana a me ka māhele ʻana.
• Immunotherapy: He ʻano hana e hoʻohana ai i ka ʻōnaehana pale ponoʻī o ke keiki e hakakā i ka maʻi kanesa. Hoʻoikaika ʻia nā pale kūlohelohe o ke kino ma ka hoʻohana ʻana i nā mea i hana ʻia e ke kino ponoʻī a i ʻole nā ​​mea i hana ʻia ma kahi keʻena hoʻokolohua.
• Lapaʻau i kuhikuhi ʻia: Hoʻohana i nā lāʻau lapaʻau a i ʻole nā ​​​​mea ʻē aʻe e ʻike a hoʻouka i nā hunaola kanesa kikoʻī. No ka laʻana, hiki i nā lāʻau lapaʻau i kapa ʻia ʻo BRAF inhibitors ke pepehi i nā hunaola kanesa ma ke kāohi ʻana i nā protein e pono ai no ka ulu ʻana o nā hunaola. ʻO nā antibodies monoclonal nā protein ʻōnaehana pale i hana ʻia ma ka lab.
• Hoʻoili pūnaewele kumu: Ke hoʻoili ʻana o nā pūnaewele hou e pani i nā pūnaewele hoʻokumu koko i luku ʻia e ka chemotherapy.

Hiki ke pale ʻia ka LCH?

Hiki ke pale ʻia ka LCH ma muli o ka hoʻololi ʻana o ka genetics. ʻAʻole hiki iā mākou ke kāohi i kekahi mau mea pilikia, e like me ka mōʻaukala ʻohana a me ka lāhui. Eia nō naʻe, aia kekahi mau mea hiki iā mākou ke hoʻokele:

• ʻAʻohe puhi paka.
• Ke pale nei i kekahi mau kemika ʻino i ka wā hāpai.
• Ke loaʻa ʻana o nā lāʻau pale āpau i ʻōlelo ʻia.

He aha ka wānana o (LCH)?

ʻO ka nānā ʻana no LCH e pili ana i kekahi mau kumu:

• ʻEhia mau ʻōnaehana kino a i ʻole nā ​​​​​​ʻōkana i hoʻopilikia ʻia?
• ʻO nā ʻōnaehana a i ʻole nā ​​​​ʻōkana o ke kino i hoʻopilikia ʻia.
• Pehea ka maikaʻi o ka pane ʻana o ka maʻi i ka lāʻau lapaʻau.

ʻO ka maʻamau, ʻo nā keiki me ka ʻōnaehana hoʻokahi (LCH) a me ka multisystem (LCH) ʻaʻole i hoʻopilikia i ke akepaʻa, ka spleen, a i ʻole ka iwi iwi e hāʻule i loko o ka māhele "haʻahaʻa-pilikia". Me ka mālama ʻana, loaʻa i nā keiki ma kēia māhele kahi kokoke i 100% o ka manawa e ola ai. Eia nō naʻe, hiki i ka maʻi ke hoʻi hou a/a i ʻole e hoʻomohala i nā pilikia lōʻihi ʻē aʻe.

ʻO nā keiki me ka multisystemic leukemia (LCH) e hoʻopilikia ana i ke ake, ka spleen, a i ʻole ka iwi iwi e hāʻule i loko o ka māhele "kiʻekiʻe pilikia".

Āhea e pono ai i kaʻu keiki ke ʻike i ke kauka?

ʻOiai ma hope o ka pau ʻana o ka lāʻau lapaʻau a kāu keiki, pono ke kauka e ʻike pinepine i kāu keiki. ʻO kēia no ka mea he kiʻekiʻe ka pilikia o ka hoʻi hou ʻana o ka maʻi. No laila, pono e nānā ʻia kāu keiki no kekahi mau makahiki. I loko o kēia mau hoʻokolohua hahai, pono e hana hou ʻia nā hoʻokolohua like i hana ʻia i ka wā i ʻike ʻia ai ke keiki, e like me ka ultrasound, MRI, CT scan, a me PET scan. E haʻi aku ke kauka iā ʻoe i ka pinepine o kou lawe ʻana mai i kāu keiki.

He aha nā nīnau e pono iaʻu e nīnau aku i ke kauka o kaʻu keiki?

He nui paha kāu mau nīnau e pili ana i ka hōʻailona o kāu keiki. He manaʻo maikaʻi e kākau iā lākou a lawe pū me ʻoe i kāu manawa kauka aʻe. Eia kekahi mau nīnau hiki iā ʻoe ke nīnau:

• Pehea ka hopena o ka Langerhans cell histiocytosis i kaʻu keiki?
• Pono anei kaʻu keiki i ka lāʻau lapaʻau?
• He aha nā koho lapaʻau i loaʻa no kaʻu keiki?
• He aha nā hopena ʻaoʻao o ka lāʻau lapaʻau?
• E ho'ōla loa ʻia anei kaʻu keiki me kēia mau lāʻau lapaʻau?
• He aha ka manaʻolana no ka maʻi o kaʻu keiki?
• Aia kekahi mau hui kākoʻo hiki iā ʻoe ke paipai mai?

ʻO ka hope loa, he leka lawe-i-ka-home

ʻO ka Langerhans Cell Histiocytosis (LCH) kahi maʻi laha ʻole e hoʻopilikia pinepine i nā keiki. Inā ke hele nei kāu keiki i kēia, nui paha kou mau manaʻo. Nui paha kou kaumaha a me kou makaʻu no kāu keiki. Makaʻu loa paha ʻoe i loko, akā ke hoʻāʻo nei paha ʻoe e ikaika ma waho. He kūpono kou mau manaʻo a pau. Akā e hoʻomanaʻo, ʻaʻole pono ʻoe e hele wale ma kēia huakaʻi. Ua ʻike ka hui lapaʻau o kāu keiki i kāu mea e hele nei. Aia lākou ma laila e kōkua iā ʻoe i kēlā me kēia ʻanuʻu o ke ala, e hoʻomaopopo i ke kūlana o kāu keiki, a e hāʻawi iā ʻoe i ka ikaika e hoʻomanawanui ai.

E hoʻomanaʻo, ʻo ka ʻike mua ʻana a me ka mālama kūpono e hiki ai ke hāʻawi i kāu keiki i kahi olakino maikaʻi aʻe. Mai makaʻu, e kū i kēia me ka wiwo ʻole.

ʻO ka Langerhans Cell Histiocytosis, LCH, pediatrics, maʻi ʻaʻai, nā hoʻololi genetic, nā hōʻailona, ​​​​​​lāʻau lapaʻau