Loaʻa i kāu pēpē kēia maʻi koʻikoʻi pū kekahi? E aʻo kākou e pili ana i ka SCID (Severe Combined Immunodeficiency)!

Ke maʻi mau nei kāu keiki liʻiliʻi? Ke lilo nei anei kahi anu liʻiliʻi i mea koʻikoʻi? I kekahi manawa, ma ke ʻano he mau mākua, hopohopo nui mākou no kēia mau mea. I kēia lā, e kamaʻilio mākou e pili ana i kahi maʻi laha ʻole e weliweli a hiki ke hoʻokele inā ʻike pono ʻia ʻoe. Ua kapa ʻia ʻo SCID (Severe Combined Immunodeficiency). He mea weliweli iki ke kani o ka inoa, akā e kamaʻilio kākou e pili ana i ia mea me nā kikoʻī a me ka maʻalahi.

He aha ka SCID (Severe Combined Immunodeficiency)? E hoʻomaopopo maʻalahi kākou.

I ka ʻōlelo maʻalahi, he maʻi kakaikahi loa ka SCID. ʻO ka mea e hana ʻia, i ka wā e hānau ʻia ai nā pēpē, ua nāwaliwali loa ko lākou ʻōnaehana pale, ka mea e hakakā nei i nā maʻi, a ua nele loa paha. E noʻonoʻo i kā mākou ʻōnaehana pale e like me ka pūʻali koa e pale ana i ko mākou ʻāina. ʻO kēia ʻōnaehana ka mea e pale ai iā mākou ma ke kaua ʻana i nā ʻenemi (ʻo ia hoʻi nā germs) e hele mai ana mai waho. No laila, ua nāwaliwali loa kēia "pūʻali koa" o kahi pēpē me SCID, a aneane ʻole paha.

Ua kapa ʻia kēia he maʻi pale ʻole mua . ʻO ia hoʻi, he mea ia e kū nei i ka wā hānau. No laila, no nā pēpē me SCID, ʻoiai he maʻi liʻiliʻi a mākou e mālama ʻole ai, e like me ke anu, he paʻakikī ke lanakila. Inā ʻaʻole mālama ʻia, hiki i kēia kūlana ke hoʻoweliweli i ke ola i loko o hoʻokahi a ʻelua paha makahiki. ʻO ia ke kumu he mea nui e makaʻala i kēia.

He aha ka hemahema o ka pale ʻana o ka maʻi "Hui Pū ʻia"?

Ua like ko kākou ʻōnaehana pale maʻi me ka mana pale i loko o ko kākou kino. Ke komo mai nā mea ʻē, e like me nā virus , bacteria , fungi , protozoa , a i ʻole nā ​​mea ʻawahia, i loko o ke kino, ʻike kēia mana pale iā lākou a hele e kaua. ʻO nā koa nui i kēia hakakā he mau hunaola koko keʻokeʻo . I waena o lākou , he kūikawā nā lymphocytes . ʻEkolu ʻano o nā lymphocytes:

• Nā pūnaewele-T
• Nā pūnaewele B
• Nā pūnaewele pepehi kanaka kūlohelohe (nā pūnaewele NK)

I nā pēpē me SCID, hemahema pinepine kēia mau cell-T a ʻaʻohe loa paha. No ka mea, pono nā cell-B i ke kōkua mai nā cell-T e hana pono ai, ke nalowale nā ​​​​cell-T, ʻaʻole hana pono nā cell-B. ʻO ia ke kumu i kapa ʻia ai ʻo "hui pū ʻia" - no ka mea, he hui pū ʻana ia o kekahi mau ʻano koʻikoʻi o nā cell immune.

Aia nā ʻano like ʻole o SCID, ma muli o ke ʻano o nā hunaola pale i nele i ke keiki. Akā, ua like ke koʻikoʻi o kēia mau ʻano a pau. E wehewehe nā kauka iā ʻoe i ke ʻano o kāu keiki.

Pehea ka maʻamau o SCID?

He maʻi laha ʻole ka SCID.Eia kekahi laʻana, ma ʻAmelika Hui Pū ʻIa, hoʻopilikia kēia maʻi i hoʻokahi i loko o 50,000 mau pēpē i hānau ʻia i kēlā me kēia makahiki.

Akā ke ʻike ʻoe ua loaʻa i kāu keiki ponoʻī kekahi mea e like me kēia, ʻaʻole ia he mea nui ka laha ʻole, ʻeā? He mea weliweli loa ia, he mea hoʻokaumaha loa i ka naʻau. Ke lohe ʻoe e pili ana i kahi maʻi e like me SCID, ʻaʻole ia he huaʻōlelo wale nō, lilo ia i mea maoli e loaʻa ai ka hopena nui i kou ola.

He aha nā hōʻailona o SCID?

I kekahi manawa, ʻaʻole paha e loaʻa i kahi pēpē me SCID kekahi mau hōʻailona waho kikoʻī i ka wā mua. Eia nō naʻe, ʻo nā hōʻailona maʻamau:

• ʻAʻole e piʻi pono ke kaumaha o ke keiki.
• Ka maʻi pākī mau loa.
• Nā maʻi pinepine a koʻikoʻi.

ʻO kēia no ka mea ua nāwaliwali loa ka ʻōnaehana pale o ka pēpē, no laila ʻaʻohe ona pane iki a ʻaʻohe paha i ka maʻi. ʻO ke ʻano kēia, ʻoi aku ka nui o ka maʻi o kāu pēpē ma mua o nā pēpē ʻē aʻe. Eia kekahi, inā maʻi lākou, ʻoi aku ka koʻikoʻi o kā lākou mau hōʻailona ma mua o nā mea ʻē aʻe.

ʻOi aku ka nui o ka pilikia o nā pēpē me SCID i ka loaʻa ʻana o nā ʻano maʻi āpau. Hoʻokomo pū ʻia kēia:

• Nā maʻi bacteria
• Nā maʻi viral
• Nā maʻi fungal
• Nā maʻi parasitic

ʻOiai hiki i kekahi maʻi ke koʻikoʻi, aia kekahi mau ʻano maʻi i maʻa mau i nā pēpē me SCID:

• ʻO nā maʻi hū e like me ka thrush a i ʻole ka diaper rash ma ka waha a me ke alelo.
• Maʻi puʻupuʻu.
• Nā pehu a puni ka waha (Nā ʻeha anu - herpes simplex).
• Nā maʻi pepeiao.
• Pneumonia.
• ʻO ka maʻi lolo (meningitis).

Inā hoʻomau kēia mau hōʻailona i kāu keiki liʻiliʻi, pono ʻoe e ʻike koke i ke kauka.

He aha ke kumu o SCID?

He maʻi hoʻoilina ka SCID. ʻO ia hoʻi, ua hoʻokumu ʻia e nā hoʻololi hoʻoilina , a i ʻole nā ​​​​loli wale nō i loko o kā mākou mau genes. Ua ʻike nā kānaka ʻepekema ma mua o ka ʻumikūmālua o ia mau hoʻololi hoʻoilina e hiki ai ke hana i ka SCID.

Hoʻoilina ʻia kēia mau hoʻololi hoʻoilina mai nā mākua a i nā keiki. Hiki ke hoʻoilina ʻia ma ke ʻano he autosomal recessive a i ʻole X-linked .

• ʻO ke ʻano o ka autosomal recessive , no ke keiki e loaʻa ai kēia ʻano, pono iā lākou ke hoʻoilina i ka gene mutated mai ko lākou makuahine a me ko lākou makuakāne.
• Hoʻokumu ʻia ka X-linked SCID e kahi hoʻololi genetic ma ka chromosome X. ʻOi aku ka hopena o ia i nā keikikāne, no ka mea, hoʻokahi chromosome X ko nā keikikāne, a ʻelua mau chromosome X ko nā kaikamahine.

He aha nā pilikia e hiki ke loaʻa mai ka SCID?

ʻO ka pilikia nui loa a weliweli loa, ʻo ia ka loaʻa ʻole o ka ʻōnaehana pale kino ikaika o ke keiki e pale aku ai i nā maʻi. ʻOiai ʻaʻole hiki i ke kino o ke keiki ke pale aku i ka maʻi liʻiliʻi loa, ʻoi aku ka kiʻekiʻe o ka pilikia o ka loaʻa ʻana o nā pilikia koʻikoʻi ma mua o nā keiki ʻē aʻe.

ʻOiai nā maʻi i ʻole ka mea koʻikoʻi loa hiki ke hana i nā pilikia e hoʻoweliweli ana i ke ola i kahi keiki me SCID.

Inā ʻaʻole i ʻike ʻia a mālama ʻia ke ʻano i ka wā hānau, he mea make pinepine ka SCID.

Pehea e ʻike ai nā kauka i ka SCID?

Hoʻomaopopo nā kauka i ka SCID me kahi hoʻāʻo koko . Hana ʻia kēia hoʻāʻo ma ka lawe ʻana i kahi hāpana koko liʻiliʻi mai ke kuʻekuʻe wāwae o ka pēpē ma hope koke o ka hānau ʻana.

Hana pū kekahi mau haukapila ma Sri Lanka i kēlā mau hoʻokolohua ma nā pēpē hānau hou, ʻoiai inā ua loaʻa i kekahi o ka ʻohana ia mau kūlana ma mua. He mea nui loa kēia, no ka mea, inā ʻike mua ʻia ka maʻi, hiki ke hoʻomaka ʻia ka lāʻau lapaʻau ma mua o ka ulu ʻana o nā maʻi koʻikoʻi.

Aia kekahi lāʻau lapaʻau no SCID?

ʻAe, aia kahi lāʻau lapaʻau no SCID. Pono nā pēpē me SCID e loaʻa i kahi hoʻoili cell kumu a i ʻole ka hoʻoili iwi iwi i ka wā hikiwawe loa. Pili kēia i ka hoʻokomo ʻana i nā cell kumu olakino mai kahi mea hāʻawi i loko o ke kino o ka pēpē. Kōkua kēia mau cell olakino i ka pēpē e kūkulu i kahi ʻōnaehana pale kino hou a ikaika e hiki ke hakakā i nā maʻi.

• ʻO nā mea hāʻawi maikaʻi loa, he mau hoahānau hānau maoli lākou ʻaʻohe SCID.
• Inā ʻaʻohe kanaka e like me ia, nānā nā kauka i nā papa inoa o nā cell kumu . ʻO kēia nā waihona ʻikepili o nā cell kumu i hāʻawi ʻia e ka lehulehu.

ʻOiai e kali ana no kahi hoʻoili cell stem, pono paha kāu keiki i nā lāʻau lapaʻau ʻē aʻe. Eia kekahi laʻana:

• Nā lāʻau antibiotic - Kāohi i nā maʻi bacteria.
• Nā lāʻau antiviral - pale i nā maʻi viral.
• Nā lāʻau antifungal - pale i nā maʻi fungal.
• Nā hoʻokomo ʻana o IVIG - Hana ʻia kēia ma ka hāʻawi ʻana i nā antibodies mai waho o ke kino e pale aku ai i nā maʻi.
• Lapaʻau Gene - He lāʻau hoʻokolohua kēia, akā hiki ke holomua no kekahi ʻano SCID.

He mau lāʻau lapaʻau manawa pōkole kēia a pau, ʻaʻole hiki ke ho'ōla loa ʻia ka SCID. ʻO ke ala wale nō e ho'ōla ai i ka SCID ma o ka hoʻoili ʻana i nā cell kumu.

ʻOiai e kali ana no ke kāpili ʻana o nā cell kumu, pono paha e hoʻokaʻawale ʻia ke keiki i kahi kaʻawale sterile . ʻO ke ʻano kēia, pono e sterilized nā mea a pau e komo i loko o ka lumi o ke keiki. Hana ʻia kēia e pale i ke keiki mai nā germs.

Ua kapa kekahi poʻe iā SCID he "maʻi pēpē pehu" no ka mea ua mālama ʻia ke pēpē i loko o kahi pehu pale. Akā, ʻaʻole pololei kēia inoa ma ke ʻano lapaʻau, a hiki ke hōʻeha i ke keiki a me nā mākua. ʻAʻohe āu i hana hewa, a ʻaʻole pono e hoʻomāmā ʻia ke olakino o kāu keiki.

He aha kaʻu e manaʻo ai inā loaʻa i kaʻu keiki ʻo SCID?

He maʻi make ka SCID inā ʻaʻole mālama koke ʻia. No laila, he mea nui loa ia e ʻike inā loaʻa i kahi keiki ka SCID i ka wā hikiwawe loa. ʻO ka wikiwiki o ka ʻike ʻana o nā kauka i ka maʻi a kuhikuhi i ke keiki no kahi hoʻoili cell stem, ʻoi aku ka maikaʻi o ka manawa e hoʻopakele ai i ke ola o ke keiki.

ʻAʻole paha ʻoe e hiki ke ʻapo a ʻapo i kāu pēpē e like me kou makemake. Inā aia kāu pēpē i loko o kahi noho maʻemaʻe a kaʻawale, pono ʻoe e hahai i nā lula hoʻomaʻemaʻe koʻikoʻi e pale i kāu pēpē mai nā germs. E wehewehe nā kauka i kēia mau mea āpau iā ʻoe. E haʻi pū lākou iā ʻoe i ka mea e manaʻo ai ma mua a ma hope o ke kāpili ʻana o nā cell stem.

He aha ke kūlana o ke ola o kahi pēpē me SCID?

Me ka ʻole o ka lāʻau lapaʻau, make pinepine nā pēpē me SCID i loko o hoʻokahi a ʻelua paha makahiki. Eia nō naʻe, hiki i nā keiki i loaʻa i kahi hoʻoili cell stem holomua ke ola i kahi ola maʻamau. Ke hoʻomohala ko lākou kino i kahi ʻōnaehana pale ikaika a piha, ʻaʻole lākou e loaʻa nā pilikia lōʻihi.

Hiki ke pale ʻia ka SCID?

Hoʻokumu ʻia ka SCID e nā hoʻololi genetic i hiki ʻole iā mākou ke kaohi, no laila ʻaʻohe mea hiki iā mākou ke hana e pale aku ai. Inā he moʻolelo ʻohana kou o kēia maʻi genetic, e kamaʻilio me kāu kauka e pili ana i ka loaʻa ʻana o ka ʻōlelo aʻoaʻo genetic ma mua o ka loaʻa ʻana o kahi keiki.

Āhea wau e ʻike ai i ke kauka?

• Inā maʻi pinepine kāu pēpē, a hōʻike paha i nā hōʻailona koʻikoʻi i ka wā maʻi, e ʻike koke i ke kauka.
• Inā ʻike mua ʻoe ua loaʻa i kāu keiki ka SCID, e haʻi koke i kāu kauka inā ʻike ʻoe i kekahi mau loli i ke olakino o kāu keiki (e laʻa, ke kuni, ka ʻū, ka maʻi pākī). ʻOiai ʻaʻole hiki i ke kino o kāu keiki ke pale aku i nā maʻi ma kāna iho, he mea nui e hāʻawi koke iā lākou i nā lāʻau antibiotic a i ʻole nā ​​lāʻau lapaʻau ʻē aʻe.

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

He mea maʻamau ka manaʻo kaumaha a me ka haʻalulu ke ʻike ʻoe ua loaʻa i kāu keiki ka SCID. Akā, mai makaʻu e nīnau i kāu kauka i nā nīnau āu e loaʻa ai. He mea nui e maopopo i nā mea āpau i kēia manawa. Hiki iā ʻoe ke nīnau i nā nīnau e like me:

• Loaʻa i kaʻu keiki ka SCID a i ʻole kekahi maʻi pale ʻē aʻe?
• Pono anei e mālama ʻia kaʻu pēpē i loko o kahi kaʻawale sterile?
• Āhea e pono ai i kaʻu keiki kahi hoʻoili cell kumu?
• He aha nā loli a i ʻole nā ​​hōʻailona e pono iaʻu e makaʻala nui i kaʻu keiki?

E hoʻomanaʻo, he mea nui loa ka hoʻolālā ʻana i kahi hoʻoili cell kumu no kāu keiki i ka wā hikiwawe loa. Eia kekahi, loaʻa iā ʻoe ke kuleana e hoʻomaopopo i nā mea āpau e hana nei. E wehewehe nā kauka i nā mea āpau iā ʻoe a haʻi iā ʻoe i ka mea e manaʻo ai.

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

He maʻi koʻikoʻi a weliweli hoʻi ka SCID (Severe Combined Immunodeficiency). Eia nō naʻe, ʻo ka ʻike mua ʻana, ka ʻimi ʻana i ke aʻo lapaʻau i ka wā e ʻike ʻia ai nā hōʻailona, ​​a me ka loaʻa ʻana o ka lāʻau kūpono e hiki ke hoʻopakele i ke ola o ke keiki.

• ʻIke mua: He mea nui loa ka ʻike ʻana i ka SCID ma o ka nānā ʻana i nā keiki hānau hou a i ʻole i ka wā e ʻike ʻia ai nā hōʻailona.
• Hoʻoili pūnaewele kumu: ʻO kēia ka lāʻau lapaʻau nui a kūleʻa loa no SCID.
• He wahi palekana: He mea nui e pale i ke keiki mai nā maʻi i ka wā e mālama ʻia ai.
• Ikaika noʻonoʻo: Hiki i kēia ke lilo i manawa paʻakikī ma ke ʻano he makua. E ʻimi i ke kākoʻo mai nā kauka, ka ʻohana, a me nā kākāʻōlelo.

ʻAʻole ʻoe hoʻokahi. Me ka holomua o ka ʻepekema lapaʻau, hiki i nā keiki me SCID ke ola olakino a piha. E noho ikaika a me ka manaʻolana.

ʻO ke kūpale ʻana, SCID, nā maʻi kamaliʻi, nā maʻi hoʻoilina, ka hoʻoili ʻana o ka iwi iwi, ka nele o ka pale ʻana, nā maʻi lele