Koj tus me nyuam puas mob tas li? Tej zaum nws yog SCID (Severe Combined Immunodeficiency)! Cia peb tham txog nws!

Koj tus me nyuam puas ib txwm mob? Puas muaj ib qho mob zoo dua ua ntej lwm qhov? Qee zaum qhov no yog ib txwm muaj, tab sis nws kuj tuaj yeem tshwm sim los ntawm ib qho mob tsis tshua muaj tab sis loj heev. Qhov ntawd yog qhov SCID (Severe Combined Immunodeficiency) yog. Cia peb tham txog qhov no kom meej me ntsis hnub no, puas yog? Tsis txhob txhawj, nws yog ib qho tseem ceeb heev uas yuav tsum paub txog qhov no.

SCID (Severe Combined Immunodeficiency) yog dab tsi? Cia peb nkag siab yooj yim.

Hais yooj yim xwb, SCID yog ib qho mob caj ces uas tsis tshua muaj neeg mob thiab cuam tshuam rau ob peb tug neeg xwb. Nws ua rau peb lub cev tiv thaiv kab mob , uas tawm tsam kab mob, ua haujlwm tsis zoo. Nws tuaj yeem yog ib qho mob hnyav heev.

Peb hu qhov no ua ' kev tiv thaiv kab mob tsis txaus'. Qee phau ntawv kuj hu nws ua 'kev ua yuam kev ntawm kev tiv thaiv kab mob los ntawm lub cev'. Uas yog, nws yog ib yam dab tsi uas muaj txij li hnub yug thiab tuaj yeem kis mus rau ntau tiam neeg. Ntau yam kev hloov pauv caj ces tuaj yeem ua rau muaj tus mob SCID no.

Xav txog seb, txawm tias nyob hauv lub tebchaws zoo li Asmeskas, yog tias muaj li ntawm 58,000 tus menyuam yug txhua xyoo, tsuas yog li ib tus ntawm lawv yuav muaj tus mob no hu ua SCID (Severe Combined Immunodeficiency). Koj tuaj yeem xav txog seb qhov ntawd tsis tshua muaj li cas.

Muaj dab tsi tshwm sim hauv tus menyuam mos uas muaj SCID?

Yuav kom nkag siab qhov no, peb yuav tsum xub saib seb peb lub cev tiv thaiv kab mob ua haujlwm li cas, uas yog pab tub rog uas tawm tsam kab mob.

Xav txog, thaum ib tug me nyuam nyob hauv nws niam lub tsev menyuam, ib pab tub rog ntawm cov hlwb tiv thaiv kab mob pib tsim nyob rau hauv nws lub cev. Lub hauv paus ntawm pab tub rog no yog cov pob txha . Muaj cov hlwb tshwj xeeb nyob ntawd, uas peb hu ua ' cov hlwb noob ' . Cov hlwb noob no tuaj yeem ua rau tag nrho peb hom hlwb ntshav tseem ceeb:

• Cov qe ntshav liab : Cov no yog cov uas nqa oxygen thoob plaws lub cev.
• Cov qe ntshav dawb : Cov no yog cov tub rog hauv peb lub cev uas tiv thaiv peb ntawm kab mob.
• Platelets : Cov no pab kom cov ntshav khov.

Tam sim no, ntawm cov qe ntshav dawb no, muaj ib pawg tshwj xeeb hu ua 'lymphocytes' . Cov no yog cov uas tawm tsam kab mob ncaj qha. Muaj ob hom lymphocytes no tseem ceeb: T-cells thiab B-cells. Ob lub cell no tseem ceeb heev rau kev tawm tsam kab mob.

• Cov qe ntshav T paub txog cov 'invaders' uas ua rau muaj kab mob - cov khoom xws li cov kab mob me me thiab cov kab mob me me - uas nkag mus rau hauv lub cev, tawm tsam lawv, thiab rhuav tshem lawv.
• Cov qe ntshav B ua cov 'tshuaj tiv thaiv kab mob' . Cov tshuaj tiv thaiv kab mob no zoo li kev nco qab. Thaum koj mob, koj nco qab nws thiab npaj txhij los tawm tsam nws yog tias nws rov qab los.

Lo lus 'Combined' nyob rau hauv lub npe SCID (Severe Combined Immunodeficiency) txhais tau hais tias tus kab mob no cuam tshuam rau ob qho tib si T-cells thiab B-cells. Yog vim li ntawd nws thiaj hu ua 'combined' deficiency.

Ib tug me nyuam uas muaj SCID muaj cov lymphocytes no tsawg heev, lossis cov hlwb uas lawv muaj tsis ua haujlwm zoo. Yog li ntawd, vim tias lub cev tiv thaiv kab mob tsis ua haujlwm zoo, nws nyuaj heev, qee zaum tsis yooj yim sua, los tawm tsam cov kab mob - cov kab mob, cov kab mob me me, thiab cov pwm.

Dab tsi ua rau muaj SCID?

Kuj tseem muaj ntau hom SCID (Severe Combined Immunodeficiency).

Hom kab mob feem ntau yog tshwm sim los ntawm teeb meem nrog ib tug noob caj noob ces ntawm X chromosome . Qhov no feem ntau tsuas yog cuam tshuam rau cov tub hluas xwb. Vim tias cov ntxhais muaj ob tug X chromosomes, txawm tias ib tug muaj teeb meem, lawv lub cev tiv thaiv kab mob tseem tuaj yeem ua haujlwm vim yog lwm tus X chromosome noj qab haus huv. Tab sis cov tub hluas tsuas muaj ib tug X chromosome. Yog li ntawd, yog tias tus noob caj noob ces ntawd tsis muaj zog, tus kab mob yuav tshwm sim. Cov ntxhais tsuas yog tuaj yeem yog 'cov neeg nqa' tus kab mob. Qhov no txhais tau tias txawm tias lawv tsis muaj tus kab mob, lawv cov menyuam tuaj yeem kis tus noob caj noob ces.

Muaj lwm hom SCID, uas yog tshwm sim los ntawm qhov tsis txaus ntawm ib qho enzyme uas tsim nyog rau kev loj hlob ntawm cov lymphocytes. Sib nrug ntawm qhov no, SCID kuj tseem tuaj yeem tshwm sim los ntawm ntau yam kev ua rau caj ces.

Cov tsos mob ntawm SCID yog dab tsi? Yuav kuaj mob li cas?

Txawm hais tias cov menyuam mos uas muaj SCID yuav zoo li noj qab nyob zoo thaum yug los , tej teeb meem yuav pib tshwm sim raws sijhawm. Nov yog qee cov cim qhia uas yuav tsum tau ceev faj:

• Ua tsis tau zoo, tsis nce phaus tsis tu ncua .
• Mob raws plab ntev .
• Muaj mob ua pa ntau zaus, qee zaum mob hnyav . Qhov no txhais tau tias mob hauv siab thiab hnoos tas li.
• Ib qho kab mob fungal uas ua rau muaj cov pob dawb hauv qhov ncauj thiab caj pas (qhov ncauj thrush)Los txog. Peb kuj hu qhov no ua 'Ullogam'.
• Tsis tas li ntawd xwb, lwm yam kab mob bacterial, viral, lossis fungal uas nyuaj kho thiab tuaj yeem hnyav heev feem ntau tshwm sim. Piv txwv li:
• Kab mob pob ntseg (mob pob ntseg mob hnyav)
• Kev kis mob ntawm lub qhov ntswg (sinusitis)
• Cov tawv nqaij ua pob khaus
• Mob taub hau, mob meningitis
• Mob ntsws o

Xav seb yuav nyuaj npaum li cas rau cov niam txiv yog tias ib tug me nyuam yaus pheej mob li no, thiab yog tias muaj ib qho mob zoo dua ua ntej muaj lwm qhov mob. Yog li ntawd, yog tias muaj ib lossis ntau yam ntawm cov tsos mob no tseem muaj, koj yuav tsum mus ntsib kws kho mob sai li sai tau.

Yuav kuaj mob SCID (Severe Combined Immunodeficiency) li cas?

Zoo hmoo, kev kuaj ntshav yooj yim, hu ua 'kev kuaj mob menyuam mos' , tam sim no tau ua los kuaj xyuas qee yam kab mob hauv cov menyuam mos thaum lawv yug los . Piv txwv li, 'kab mob sickle cell' thiab 'cystic fibrosis' tuaj yeem kuaj pom los ntawm qhov no. Cov kev kuaj zoo sib xws kuj tau ua hauv Sri Lanka. Cov xov xwm zoo yog tias SCID (Severe Combined Immunodeficiency) tam sim no kuj tuaj yeem kuaj pom los ntawm kev kuaj mob menyuam mos no hauv qee lub tebchaws.

Ua li no , thaum kuaj pom tus kab mob thaum ntxov, kev kho mob tuaj yeem pib sai. Tom qab ntawd cov txiaj ntsig zoo dua.

Yog tias kev kuaj mob menyuam mos qhia tias muaj SCID, feem ntau tus menyuam yuav raug xa mus rau tus kws kho mob tshwj xeeb hauv kev tiv thaiv kab mob tsis zoo. Tus kws kho mob ntawd yuav xaj kom kuaj ntshav ntxiv, thiab tej zaum yuav kuaj noob caj noob ces .

Yog tias ib tug neeg hauv tsev neeg muaj SCID, lossis yog tias muaj keeb kwm tsev neeg ntawm kev tiv thaiv kab mob tsis zoo, cov niam txiv tuaj yeem tau txais kev qhia txog caj ces . Lawv kuj tuaj yeem kuaj ntshav sai li sai tau thaum tus menyuam yug los . Qhov sai dua qhov kuaj mob tau ua tiav, qhov kev kho mob sai dua tuaj yeem pib thiab qhov tshwm sim zoo dua.

Qee zaum, yog tias paub txog qhov kev hloov pauv ntawm cov noob caj noob ces uas ua rau muaj SCID hauv tsev neeg, nws muaj peev xwm kuaj tus menyuam rau tus kab mob thaum yug los . Txawm li cas los xij, rau cov menyuam mos uas tsis muaj keeb kwm tsev neeg lossis cov uas tsis tau kuaj los ntawm kev kuaj menyuam mos, nws yuav lig li 6 lub hlis ua ntej kuaj pom tus kab mob. Thaum ntawd, nws lig dhau lawm.

Cov kev kho mob rau SCID yog dab tsi?

SCID yog ib qho xwm txheej ceev rau cov menyuam yaus. Qhov no txhais tau tias yog tsis kho sai sai, cov menyuam mos no yuav tuag ua ntej lawv hnub yug ib xyoos. Yog li ntawd, kev kho mob sai sai yog qhov tseem ceeb heev.

Kev kho mob feem ntau yog 'kev hloov hlwb hlwb'. Qhov noKuj hu ua 'kev hloov pob txha', qhov no yog kev muab cov hlwb ntawm tus neeg noj qab haus huv rau tus menyuam mob. Kev cia siab yog tias cov hlwb tshiab no yuav tsim kho tus menyuam lub cev tiv thaiv kab mob.

• Kev hloov noob hlwb uas ua tau zoo tshaj plaws tuaj yeem ua tau yog tias cov noob hlwb ntawd raug coj los ntawm cov kwv tij uas muaj noob caj noob ces sib phim.
• Qee zaum, cov hlwb ntawm niam txiv kuj tuaj yeem sib haum xeeb.
• Yog tias tsis muaj leej twg hauv tsev neeg phim, cov kws kho mob kuj tuaj yeem siv cov hlwb noob los ntawm tus neeg pub dawb uas tsis muaj feem cuam tshuam.

Tej tus menyuam mos uas muaj SCID kuj tseem yuav xav tau kev kho mob chemotherapy ua ntej hloov pauv.

Qhov tseem ceeb tshaj plaws yog qhov kev hloov pauv stem cell no yuav tsum tau ua tiav hauv ob peb lub hlis thawj zaug ntawm tus menyuam lub neej, ua ntej nws muaj kab mob. Thaum ntawd yog lub sijhawm uas cov txiaj ntsig tau zoo tshaj plaws.

Kev kho mob gene kuj tau pom tias muaj txiaj ntsig zoo hauv kev sim tshuaj rau ntau hom SCID. Txawm li cas los xij, nws tseem tsis tau siv dav hauv ntau lub tebchaws thoob ntiaj teb. Kev tshawb fawb txog kev kho mob gene rau SCID tseem tab tom ua.

Thaum kho ib tug me nyuam uas muaj SCID, feem ntau muaj ib pab neeg kho mob uas muaj ntau tus kws tshwj xeeb. Piv txwv li:

• kws kho mob tiv thaiv kab mob menyuam yaus
• Kws kho mob hloov pob txha
• Kws tshaj lij txog kab mob sib kis hauv menyuam yaus

Cov menyuam mos uas muaj SCID muaj feem yuav kis tau kab mob uas ua rau tuag taus. Yog li ntawd, cov kws kho mob pib muab tshuaj rau lawv los pab tiv thaiv kab mob. Piv txwv li, tshuaj tua kab mob, tshuaj tua kab mob, tshuaj tua kab mob fungal , thiab tshuaj txhaj antibody/immunoglobulin . Ib txhia menyuam mos, nyob ntawm lawv cov noob caj noob ces, tej zaum yuav xav tau cov enzyme infusions .

Ntau yam uas yuav tsum paub txog SCID

Ntxiv rau kev siv tshuaj thiab kev kho mob, muaj lwm yam kev ceev faj uas koj yuav tsum ua kom tiv thaiv kev kis kab mob. Nco ntsoov cov no thaum saib xyuas tus menyuam uas muaj SCID:

• Yuav kom tiv thaiv kev kis tus kab mob, nws yuav tsum tau cais nws tus kheej ntawm lwm tus. Qhov no txhais tau tias muab ib chav rau nws thiab xyuas kom meej tias cov khoom uas nws kov huv si.
• Tsis zoo rau muab tshuaj tiv thaiv kab mob uas muaj sia. Qhov no yog vim tias nws tuaj yeem ua rau muaj kev phom sij rau kev muab tshuaj tiv thaiv kab mob rau tus menyuam uas muaj SCID, txawm tias yog tus kab mob tsis muaj zog,. Piv txwv li ntawm qhov no yog:Tshuaj tiv thaiv kab mob Rotavirus, tshuaj tiv thaiv kab mob qhua pias/varicella, tshuaj tiv thaiv kab mob qhua pias-kab mob qhua pias-rubella (MMR), tshuaj tiv thaiv kab mob polio noj, tshuaj tiv thaiv kab mob BCG, thiab tshuaj tiv thaiv kab mob khaub thuas muaj sia.
• Qhov tseem ceeb tshaj plaws yog tsis pub leej twg nyob hauv tib lub tsev neeg nrog tus menyuam yuav tsum tau txhaj cov tshuaj tiv thaiv kab mob no, vim tias lawv tuaj yeem kis tus kab mob mus rau tus menyuam.
• Yog tias xav tau kev hloov ntshav, nws yuav tsum tau kho tshwj xeeb rau cov ntshav. Qhov no yog ua los tiv thaiv cov teeb meem uas tuaj yeem tshwm sim los ntawm kev hloov ntshav.
• Tej zaum koj yuav tsum tsis txhob pub niam mis ib ntus kom txog thaum kuaj koj cov kua mis seb puas muaj cov kab mob uas ua rau muaj kev kis kab mob. Ua raws li koj tus kws kho mob cov lus qhia kom zoo zoo.

Nej ua niam ua txiv yuav pab tau li cas?

Thaum koj tus menyuam raug kuaj mob SCID, thiab thaum lub sijhawm kho mob, muaj ntau yam uas koj ua niam txiv tuaj yeem ua tau los txo qhov kev pheej hmoo ntawm kev kis kab mob. Nov yog qee yam ntawm lawv:

• Txwv cov qhua tuaj xyuas lub tsev. Zoo tshaj plaws kom muaj tsawg tus neeg tuaj saib tus menyuam li sai tau.
• Tsis txhob coj koj tus menyuam mus rau cov chaw pej xeem uas muaj neeg coob coob , xws li cov khw loj thiab cov kev ua koob tsheej.
• Tsis txhob coj koj tus menyuam mus ze tus neeg uas mob khaub thuas , kub taub hau, lossis hnoos. Yog tias muaj ib tug neeg zoo li ntawd nyob hauv tsev, cia lawv nyob deb ntawm koj tus menyuam.
• Ua ntej kov tus me nyuam, xyuas kom txhua tus neeg uas yuav saib xyuas tus me nyuam ntxuav lawv txhais tes kom huv si. Ntxuav koj txhais tes nrog xab npum thiab dej ntws tsawg kawg yog 20 vib nas this.

Cia peb xav txog yav tom ntej.

Ib tug me nyuam uas muaj SCID yuav tsum tau mus ntsib ntau yam kev kho mob thiab yuav tsum tau mus pw hauv tsev kho mob ntau zaus. Qhov no yuav ua rau txhua tsev neeg ntxhov siab heev. Tab sis nco ntsoov tias koj tsis yog tib tug xwb.

Cov pab pawg kho mob yeej npaj txhij pab koj thiab koj tus menyuam ua ntej, thaum lub sijhawm kho mob, thiab tom qab kho mob. Koj kuj tseem tuaj yeem tau txais kev pab thiab kev txhawb zog los ntawm cov pab pawg txhawb nqa, cov neeg ua haujlwm pabcuam hauv zej zog, tsev neeg, thiab cov phooj ywg. Tej zaum yuav muaj cov koom haum hauv Sri Lanka uas pab cov menyuam yaus uas muaj tus mob no, yog li mus saib lawv.

Yog xav nrhiav cov ntaub ntawv ntxiv thiab kev txhawb nqa hauv online, koj tuaj yeem mus saib cov vev xaib thoob ntiaj teb zoo li cov no (cov no yog lus Askiv):

• Lub Koom Haum Tiv Thaiv Kab Mob Tsis Zoo
• SCID, Cov Tubtxib Saum Ntuj Ceeb Tsheej rau Lub Neej

Cov yam tseem ceeb tshaj plaws uas koj tuaj yeem coj mus tsev los ntawm tsab xov xwm no

Zoo, yog li, los ntawm qhov peb tau tham txog, cov no yog cov yam tseem ceeb tshaj plaws uas koj yuav tsum nco ntsoov:

• SCID (Kev Tiv Thaiv Kab Mob Hnyav Ua Ke) yog ib yam kab mob caj ces uas tsis tshua muaj tab sis loj heev uas ua rau lub cev tiv thaiv kab mob ntawm tus menyuam mos tsis ua haujlwm zoo.
• Yog koj muaj cov tsos mob xws li mob hnyav heev tas li, tsis hnyav zuj zus, lossis raws plab tas li , nrhiav kev pab kho mob tam sim ntawd.
• Kev kuaj mob rau cov menyuam mos qee zaum tuaj yeem kuaj pom SCID thaum ntxov.
• Kev kuaj mob thiab kev kho mob thaum ntxov yog qhov tseem ceeb heev. Kev kho mob tseem ceeb yog kev hloov hlwb pob txha / kev hloov hlwb pob txha.
• Nws yog ib qho tseem ceeb heev uas yuav tsum tiv thaiv tus menyuam uas muaj SCID kom tsis txhob muaj kab mob, thiab yuav tsum tau ceev faj tshwj xeeb.
• Koj tsis yog tib leeg xwb. Nrhiav kev pab los ntawm cov kws kho mob, tsev neeg, thiab cov pab pawg txhawb nqa.

Vam tias cov ntaub ntawv no yuav pab tau koj. Xav kom koj tus menyuam rov zoo sai sai!

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