Koj puas tau hnov ib tug neeg hauv koj tsev neeg lossis ib tug neeg uas koj paub hais tias lawv "ntshav tsis muaj zog"? Qee zaum lawv xav tias nkees tas li, lawv daim tawv nqaij zoo li dawb thiab daj ntseg. Qhov no puas yog ntshav tsis muaj zog ib txwm muaj? Yog lawm, tej zaum nws yuav tsis yog ib txwm muaj, nws yuav yog ib qho kab mob ntshav uas tau txais los ntawm noob caj noob ces hu ua thalassemia. Tsis txhob ntshai thaum koj hnov lub npe no. Qhov no tsis yog ib yam kab mob sib kis. Cia peb tham txog txhua yam yooj yim thiab meej.
thalassemia yog dab tsi tiag?
Hais yooj yim xwb, thalassemia yog ib yam kab mob ntshav uas peb tau txais los ntawm peb niam peb txiv. Ib tug neeg uas muaj tus mob no muaj cov qe ntshav liab noj qab haus huv tsawg dua li qub thiab cov protein hu ua hemoglobin .
Xav txog nws, cov qe ntshav liab yog cov kev pabcuam xa khoom uas nqa cov pa oxygen thoob plaws peb lub cev. Hemoglobin zoo li lub thawv tshwj xeeb uas ntim cov pa oxygen ntawd thiab nqa nws. Hauv ib tus neeg uas muaj thalassemia, cov tsheb xa khoom no (cov qe ntshav liab) thiab cov thawv oxygen (hemoglobin) tsis txaus, lossis muaj qee qhov tsis zoo hauv lawv. Yog li, tsis yog txhua qhov ntawm lub cev tau txais cov pa oxygen txaus. Peb kuj hu qhov no ua anemia .
Kab mob Thalassemia muaj ntau lub npe sib txawv. Tej zaum koj yuav tau hnov cov npe no:
- Alpha thalassemia
- Beta thalassemia
- Cooley tus kab mob ntshav tsis txaus
- Kab mob ntshav tsis txaus hauv Mediterranean
Kab mob thalassemia tshwm sim li cas? Leej twg muaj feem yuav muaj tus kab mob no?
Thalassemia tsis yog ib yam kab mob uas peb kis tau los ntawm zaub mov, dej, lossis lwm tus neeg. Nws yog ib yam uas kis tau los ntawm niam txiv mus rau cov menyuam los ntawm cov noob caj noob ces.
Muaj ob feem tseem ceeb los ua cov protein hu ua hemoglobin. Lawv yog alpha globin thiab beta globin. "Daim ntawv qhia ua cov no yog nyob rau hauv peb cov noob caj noob ces. Yog tias muaj qhov yuam kev hauv cov noob caj noob ces no (qhov yuam kev hauv daim ntawv qhia ua), lub cev yuav tsis muaj peev xwm ua cov hemoglobin noj qab haus huv raws li qhov xav tau.
- Yog tias koj tau txais ib tug noob caj noob ces tsis zoo los ntawm ib tug niam txiv xwb: Tej zaum koj yuav yog tus nqa cov noob caj noob ces. Qhov no txhais tau tias koj yuav tsis muaj lossis muaj ob peb yam tsos mob xwb, tab sis koj tuaj yeem xa cov noob caj noob ces tsis zoo mus rau koj cov menyuam.
- Yog koj tau txais cov noob caj noob ces tsis zoo los ntawm niam txiv ob leeg: Tej zaum koj yuav muaj tus kab mob thalassemia me me, nruab nrab, lossis hnyav.
Tus mob no feem ntau pom ntawm cov neeg hauv cov tebchaws Es Xias xws li Sri Lanka, Middle East, Africa, thiab cov tebchaws Mediterranean xws li Greece thiab Turkey.
Cov hom mob thalassemia tseem ceeb yog dab tsi?
Thalassemia muab faib ua ob hom tseem ceeb, nyob ntawm seb qhov twg ntawm cov hemoglobin formula puas lawm.
| Hom kab mob Thalassemia | Piav qhia yooj yim |
|---|---|
| Alpha Thalassemia | Nws yog tshwm sim los ntawm qhov tsis zoo ntawm cov noob caj noob ces uas ua rau alpha globin yog ib feem ntawm hemoglobin. Qhov no suav nrog 4 noob caj noob ces (2 los ntawm niam, 2 los ntawm txiv). Qhov hnyav ntawm tus kab mob nyob ntawm seb muaj pes tsawg cov noob caj noob ces tsis zoo. |
| Beta Thalassemia | Nws yog tshwm sim los ntawm qhov tsis zoo ntawm cov noob caj noob ces uas ua rau beta globin yog ib feem ntawm hemoglobin. Nws muaj ob lub noob caj noob ces (ib qho los ntawm niam thiab ib qho los ntawm txiv). Yog tias ob lub noob caj noob ces tsis zoo no yog los ntawm noob caj noob ces, qhov mob hnyav tuaj yeem nce ntxiv. |
Cov Hom Kab Mob Alpha Thalassemia
- Tus Neeg Muaj Kab Mob: Muaj 1 lub noob caj noob ces tsis zoo. Tsis muaj tsos mob.
- Alpha Thalassemia Me: Muaj 2 lub noob caj noob ces tsis zoo. Tsis muaj lossis muaj cov tsos mob me me xwb.
- Kab mob Hemoglobin H: Muaj 3 lub noob caj noob ces tsis zoo. Cov tsos mob nruab nrab mus rau hnyav.
- Alpha Thalassemia Loj: Muaj tag nrho 4 lub noob caj noob ces tsis zoo. Qhov no yog ib qho mob hnyav heev. Feem ntau tus menyuam tuag hauv plab lossis tom qab yug los.
Cov Hom Kab Mob Beta Thalassemia
- Beta Thalassemia Me: Muaj 1 lub noob caj noob ces tsis zoo. Tsis muaj lossis tsis muaj tsos mob me me (tus neeg nqa kab mob).
- Beta Thalassemia Intermedia: Muaj 2 lub noob caj noob ces tsis zoo. Cov tsos mob nruab nrab.
- Beta Thalassemia Major / Cooley's Anemia: Muaj 2 lub noob caj noob ces tsis zoo. Qhov no yog ib qho mob uas muaj cov tsos mob hnyav heev.
Cov tsos mob ntawm thalassemia yog dab tsi?
Cov tsos mob nyob ntawm seb koj muaj hom thalassemia li cas thiab nws qhov hnyav npaum li cas. Tej tus neeg yuav tsis muaj tsos mob li. Hauv cov hom hnyav, cov tsos mob feem ntau tshwm sim ua ntej tus menyuam muaj 2 xyoos.
Qhov tseem ceeb yog tias cov tsos mob no tsis tshwm sim rau txhua tus tib yam. Tsis txhob xav tias koj muaj thalassemia tsuas yog vim koj muaj ib lossis ntau dua ntawm lawv. Yog tias koj muaj kev tsis ntseeg, nco ntsoov mus ntsib kws kho mob.
Nov yog qee cov tsos mob uas tshwm sim ntau zaus:
- Kev qaug zog thiab kev qaug zog heev
- Ua pa nyuaj , ua pa nrov nrov
- Kiv taub hau thiab tsis muaj zog
- Tawv nqaij daj los yog daj
- Cov zis tsaus nti
- Kev ntshaw noj mov
- Kev loj hlob qeeb thiab kev laus qeeb hauv cov menyuam yaus
- Lub ntsej muag tsis zoo li qub (tshwj xeeb tshaj yog lub hauv pliaj thiab pob txha ntsej muag)
- Lub plab tawm (vim yog lub siab lossis lub po loj)
- Mob taub hau ntau zaus
- Cov pob txha tsis muaj zog thiab yooj yim tawg
Yuav ua li cas koj thiaj paub tias koj muaj thalassemia?
Feem ntau, yog tias koj tsis muaj tsos mob, qhov mob tuaj yeem pom tau los ntawm kev kuaj ntshav ib txwm ua rau lwm yam laj thawj. Yog tias koj muaj tsos mob, koj tus kws kho mob yuav kuaj koj thiab nug txog koj tsev neeg keeb kwm kev kho mob.
Tom qab ntawd, nws raug pom zoo kom ua qee qhov kev kuaj ntshav tshwj xeeb, xws li:
- Kev Ntsuas Tag Nrho Cov Ntshav (CBC): Qhov no ntsuas qhov ntau ntawm cov qe ntshav liab thiab hemoglobin hauv cov ntshav. Cov no feem ntau qis rau cov neeg mob thalassemia.
- Hemoglobin Electrophoresis: Qhov no tuaj yeem txiav txim siab meej tias hom hemoglobin twg nyob hauv koj cov ntshav thiab ntau npaum li cas ntawm txhua yam.
- Kev Kuaj Genetic: Qhov kev kuaj no pab txheeb xyuas seb koj muaj hom thalassemia twg.
Kev kuaj mob thaum cev xeeb tub
Yog tias koj lossis koj tus khub muaj tus kab mob thalassemia, koj tuaj yeem kuaj koj tus menyuam rau tus kab mob ua ntej tus menyuam yug los.
- Chorionic Villus Sampling (CVS): Ib qho qauv me me ntawm lub placenta raug coj mus kuaj thaum muaj li ntawm 11 lub lis piam ntawm kev cev xeeb tub.
- Kev kuaj amniocentesis: Thaum txog li 16 lub lis piam ntawm cev xeeb tub, ib qho qauv ntawm cov kua amniotic nyob ib puag ncig tus menyuam raug coj mus kuaj.
Yog tias kuaj pom tias muaj tus mob no, koj yuav raug xa mus rau tus kws kho mob ntshav.
Cov kev kho mob rau thalassemia yog dab tsi?
Kev kho mob nyob ntawm seb tus mob hnyav npaum li cas. Ib tug neeg uas muaj tus mob me me xws li thalassemia me me tej zaum yuav tsis tas yuav kho mob dab tsi li, tab sis cov mob hnyav yuav tsum tau kho mob mus tas li.
Cov kev kho mob tseem ceeb yog:
1. Kev Hloov Ntshav
Cov neeg mob uas muaj tus kab mob thalassemia hnyav yuav tsum tau hloov ntshav kom lawv tau txais cov qe ntshav liab thiab hemoglobin zoo. Feem ntau lawv yuav tsum tau hloov ntshav txhua 2-4 lub lis piam . Qhov no muab zog rau lawv kom ua tau lawv tej dej num li qub yam tsis muaj kev qaug zog.
2. Kev Kho Mob Chelation
Vim yog muaj ntshav pub ntau zaus thiab muaj mob nkeeg, cov hlau hauv lub cev yuav nce ntxiv yam tsis tsim nyog. Peb hu qhov no ua "Iron Overload." Cov hlau ntxiv no tuaj yeem sib sau ua ke hauv cov kab mob tseem ceeb xws li lub plawv thiab lub siab thiab ua rau lawv puas tsuaj.
Yog li ntawd, cov neeg pub ntshav tau txais cov tshuaj tshwj xeeb los tshem tawm cov hlau ntxiv uas khaws cia hauv lawv lub cev. Qhov no hu ua 'Chelation Therapy'. Cov tshuaj no tuaj yeem noj ua cov tshuaj ntsiav lossis ua cov tshuaj txhaj.
3. Lwm yam kev kho mob
- Kev Hloov Pob Txha Los Yog Kev Hloov Pob Txha: Kev hloov pob txha los ntawm tus neeg pub dawb uas noj qab nyob zoo qee zaum tuaj yeem kho tau thalassemia tag nrho. Txawm li cas los xij, qhov no tsis tshua ua vim muaj kev pheej hmoo thiab qhov nyuaj hauv kev nrhiav tus neeg pub dawb uas sib haum.
- Kev Phais Mob: Qee tus neeg mob muaj lub qog ntshav loj, uas yuav tsum tau phais tshem tawm (splenectomy).
- Cov Tshuaj: Cov tshuaj xws li 'Luspatercept (Reblozyl)' thiab 'Hydroxyurea' yog siv los pab tsim cov qe ntshav liab thiab tswj cov tsos mob.
- Cov Tshuaj Pab: Koj tus kws kho mob yuav pom zoo kom noj cov vitamins xws li folic acid, uas pab tsim cov qe ntshav liab. Txawm li cas los xij, tsis txhob noj cov tshuaj pab hlau yam tsis tau kev qhia los ntawm kws kho mob rau txhua qhov laj thawj.
Yuav ua li cas thiaj li noj qab nyob zoo nrog thalassemia?
Kev saib xyuas tej no yog ib qho tseem ceeb heev rau ib tus neeg uas muaj tus kab mob thalassemia kom lawv thiaj li muaj lub neej noj qab nyob zoo thiab zoo siab.
- Ua raws li koj tus kws kho mob cov lus qhia: Ua raws li koj tus kws kho mob cov kev kho mob raws nraim li tau hais tseg, raws sijhawm, thiab nco ntsoov mus rau cov chaw kho mob.
- Kev noj zaub mov zoo: Noj zaub mov kom sib npaug thiab muaj ntau yam txiv hmab txiv ntoo thiab zaub. Nug koj tus kws kho mob yog tias koj xav tau txwv tsis pub noj cov khoom noj uas muaj hlau ntau (nqaij, ntses, taum pauv) thiab cov khoom noj uas muaj hlau ntxiv.
- Txhaj tshuaj tiv thaiv kab mob: Txhaj tshuaj tiv thaiv kab mob uas koj tus kws kho mob pom zoo, tshwj xeeb tshaj yog cov uas zoo li koob tshuaj tiv thaiv mob khaub thuas, vim tias koj yuav muaj feem kis tau kab mob ntau dua.
- Kev Ua Si:Ua ib qho kev tawm dag zog me me uas haum rau koj lub cev. Tham nrog koj tus kws kho mob txog qhov ntawd.
- Kev Huv Si: Nyob deb ntawm cov neeg mob. Ntxuav koj txhais tes ntau zaus.
- Tsis txhob haus luam yeeb thiab haus dej cawv: Cov no tsis zoo rau koj lub plawv thiab pob txha.
- Kev noj qab haus huv ntawm lub hlwb: Kev nyob nrog tus kab mob ntev ntev tuaj yeem ua rau koj lub siab qaug zog. Yog tias koj xav tias ntxhov siab lossis tu siab, tham nrog tsev neeg, phooj ywg, lossis tus kws pab tswv yim txog kev noj qab haus huv ntawm lub hlwb .
Cov Lus Qhia Txog Kev Coj Mus Tsev
- Thalassemia yog ib yam kab mob uas tau los ntawm niam txiv, tsis yog ib yam kab mob sib kis.
- Qhov no ua rau lub cev tsis muaj zog tsim cov hemoglobin thiab cov qe ntshav liab.
- Cov tsos mob muaj txij li tsis muaj tsos mob mus txog rau cov mob hnyav, uas yuav ua rau tuag taus.
- Yog tias muaj kev kho mob zoo (kev hloov ntshav, kev kho mob chelation), feem ntau cov neeg mob tuaj yeem ua neej nyob ntev li qub.
- Yog koj xav tias koj lossis ib tug neeg hauv koj tsev neeg muaj thalassemia, nco ntsoov nrhiav kev pab kho mob.
- Ua ntej pib tsev neeg, nws yog ib qho tseem ceeb heev uas yuav tsum nrhiav kev pab tswv yim txog caj ces kom paub seb koj lossis koj tus khub puas yog tus nqa khoom.
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Tsis muaj lus teb tau muab tso tawm. Ntxiv koj cov lus tawm ntawm no thawj zaug.
Ntxiv koj cov lus