Txhua Yam Koj Yuav Tsum Tau Paub Txog Thalassemia

Zoo Siab

• Cov tsos mob ntawm thalassemia
• Ua rau thalassemia
• Ntau hom thalassemia
• Kev kuaj mob thalassemia
• Cov kev kho rau thalassemia
• Thalassemia beta
• Thalassemia tseem ceeb
• Thalassemia intermedia
• Thalassemia alpha
• Hemoglobin H
• Hydrops fetalis
• Thalassemia thiab anemia
• Thalassemia thiab noob caj noob ces
• Thalassemia me
• Thalassemia hauv cov menyuam yaus
• Noj zaub mov rau thalassemia
• Kev Soj Ntsuam
• Lub neej tos
• Thalassemia mob li cas rau kev xeeb tub?
• Outlook

Thalassemia yog dab tsi?

Thalassemia yog ib qho keeb kwm los ntawm ntshav uas lub cev ua rau cov ntshav qog ntshav liab. Hemoglobin yog cov protein nyob rau hauv cov ntshav liab uas nqa oxygen.

Qhov kev cuam tshuam no ua rau muaj kev puas tsuaj ntau ntxiv hauv cov ntshav liab, uas ua rau ntshav khiav tawm haujlwm. Anemia yog ib qho mob uas koj lub cev tsis muaj ntshav liab txaus txaus thiab noj qab nyob zoo.

Thalassemia yog tau los ntawm caj ces, txhais tau hais tias tsawg kawg ib ntawm koj niam koj txiv yuav tsum yog tus muaj teeb meem ntawm qhov tsis sib xws. Nws tshwm sim los ntawm kev hloov caj ces los sis kev tshem tawm qee qhov tseem ceeb ntawm cov noob tawg.

Thalassemia mintsis yog qhov kev ua txhaum loj dua. Muaj ob hom mob thalassemia uas hnyav dua. Hauv alpha thalassemia, tsawg kawg ib qho ntawm alpha globin noob muaj kev hloov lossis txawv txav. Hauv beta thalassemia, qhov beta globin noob cuam tshuam.

Ib hom ntawm cov thalassemia muaj cov subtypes sib txawv. Daim ntawv tseeb uas koj muaj yuav cuam tshuam qhov hnyav ntawm koj cov tsos mob thiab koj lub zeem muag.

Cov tsos mob ntawm thalassemia

Cov tsos mob ntawm thalassemia yuav txawv. Qee qhov tshwj xeeb tshaj plaws suav nrog:

• pob txha deformities, tshwj xeeb yog ntsej muag
• tsaus zis
• ncua kev loj hlob thiab kev loj hlob
• nkees dhau thiab nkees dhau
• daim tawv daj lossis daj

Tsis yog txhua tus tau pom tsos mob ntawm tus mob thalassemia. Cov cim ntawm kev cuam tshuam ntawm tus cwj pwm tsis zoo kuj tuaj yeem tshwm sim tom qab menyuam yaus lossis thaum tiav hluas.

Ua rau thalassemia

Thalassemia tshwm sim thaum muaj qhov txawv txav lossis hloov pauv rau ib qho ntawm cov noob neeg koom nrog hemoglobin ntau lawm. Koj tau txais qhov keeb kwm no txawv txav ntawm koj niam koj txiv.

Yog tias tsuas yog ib tus ntawm koj niam koj txiv yog tus neeg muaj tus mob thalassemia, koj yuav tsim tus kab mob hu ua thalassemia muaj hnub nyoog. Yog tias qhov no tshwm sim, tej zaum koj yuav tsis muaj cov tsos mob, tab sis koj yuav yog tus xa khoom. Qee tus neeg uas muaj tus kab mob thalassemia muaj cov tsos mob me.

Yog tias koj ob niam txiv yog tus muaj tus mob thalassemia, koj muaj feem ntau yuav ua kom muaj mob ntxiv ntawm tus mob.

hauv cov neeg los ntawm Asia, Middle East, Africa, thiab Mediterranean teb chaws xws li tim Nkij teb chaws thiab Turkey.

Ntau hom thalassemia

Nws muaj peb hom mob Thalassemia (thiab plaub qhov quav):

• beta thalassemia, uas suav nrog subtypes qhov loj thiab nruab nrab
• alpha thalassemia, uas suav nrog subtypes hemoglobin H thiab hydrops fetalis
• thalassemia muaj hnub nyoog

Txhua hom thiab subtypes sib txawv hauv cov tsos mob thiab qhov hnyav. Qhov pib kuj tseem yuav sib txawv me ntsis.

Kev kuaj mob thalassemia

Yog tias koj tus kws khomob tabtom sim tshuaj cov mob thalassemia, lawv yuav mus kuaj ntshav. Lawv yuav xa cov qauv no mus rau chav kuaj ntshav kuaj ntshav kuaj ntshav kuaj ntshav kuaj ntshav kuaj ntshav kuaj ntshav. Cov kws kho (lab) yuav pom cov ntshav nyob hauv lub tshuab tsom seb puas pom cov qe ntshav liab liab.

Cov ntshav liab uas tsis zoo li lub cev yog cov cim ntawm cov mob thalassemia. Tus kws ntsuas txuv kuj tseem yuav ua tau ib qho kev xeem hu ua hemoglobin electrophoresis. Qhov kev ntsuam xyuas no cais tawm cov qauv sib txawv ntawm cov qe ntshav liab, uas pub lawv paub yam txawv txav.

Nyob ntawm ntau hom thiab mob nyav ntawm thalassemia, qhov kev kuaj mob lub cev yuav tseem pab koj tus kws kho mob los kuaj pom. Piv txwv li, qhov hnoos qeev loj tuaj yeem hais qhia rau koj tus kws kho mob tias koj muaj hemoglobin H.

Cov kev kho rau thalassemia

Cov kev kho mob thalassemia nyob ntawm hom thiab qhov mob loj ntawm tus kab mob koom nrog. Koj tus kws kho mob yuav muab ib txoj kev khomob rau koj uas yuav ua haujlwm zoo tshaj rau koj kis tshwj xeeb.

Qee qhov kev kho mob suav nrog:

• ntshav ntxiv
• hloov hlwb pob txha
• tshuaj thiab tshuaj noj
• tej zaum yuav phais kom tshem tau tus po lossis qe ntshav tawm

Koj tus kws kho mob yuav qhia koj kom tsis txhob noj cov vitamins lossis tshuaj ntxiv muaj hlau. Qhov no yog qhov tseeb tshwj xeeb yog tias koj xav tau ntshav ntxiv vim tias cov neeg uas tau txais lawv muaj ntau cov hlau ntxiv uas lub cev tsis tuaj yeem txav tau yooj yim. Hlau tuaj yeem tsim cov ntaub so ntswg, uas tuaj yeem ua rau neeg tuag taus.

Yog tias koj tau txais ntshav ntxiv, koj yuav tsum muaj kev kho chelation. Qhov no feem ntau suav nrog kev txhaj tshuaj ntawm cov tshuaj uas khi nrog cov hlau thiab lwm cov hlau hnyav. Qhov no pab tshem cov hlau ntxiv ntawm koj lub cev.

Thalassemia beta

Beta thalassemia tshwm sim thaum koj lub cev tsis tuaj yeem tsim beta globin. Ob lub noob, ib tus los ntawm ib tus niam txiv, yog tau txais los ua beta globin. Hom mob Thalassemia no tuaj ua ob qho kab mob loj: thalassemia loj (Cooley's anemia) thiab thalassemia intermediar.

Thalassemia tseem ceeb

Thalassemia major yog qhov hnyav tshaj ntawm cov beta thalassemia. Nws tshwm sim thaum beta globin noob uas ploj lawm.

Cov tsos mob ntawm tus mob thalassemia feem ntau tshwm sim ua ntej tus menyuam muaj ob xyoos. Kev mob ntshav khov ua rau muaj mob ua rau tuag taus. Lwm yam cim thiab tsos mob muaj xws li:

• fussiness
• daj
• nquag muaj tus kab mob
• tus tsis qab los noj mov
• tsis ua hauj lwm kom vam meej
• daj ua daj, uas yog lub ntsej muag daj los ntawm tawv nqaij lossis tawv muag ntawm qhov muag
• mob plab hnyuv siab raum

Daim ntawv ntawm thalassemia feem ntau yog li ntawd hnyav heev uas yuav tsum tau txhaj cov ntshav mus ntxiv.

Thalassemia intermedia

Thalassemia intermedia yog ib daim ntawv tsis hnyav heev. Nws tsim vim kev hloov pauv hauv ob hom beta globin noob. Cov neeg mob thalassemia intermedia tsis xav tau ntshav ntxiv.

Thalassemia alpha

Alpha thalassemia tshwm sim thaum lub cev tsis tuaj yeem ua rau alpha globin. Txhawm rau ua alpha globin, koj yuav tsum muaj plaub lub noob, ob tug los ntawm ob tus niam txiv.

Hom thalassemia no tseem muaj ob hom mob hnyav: hemoglobin H disease thiab hydrops fetalis.

Hemoglobin H

Hemoglobin H muaj kev txhim kho zoo li thaum tus neeg ploj peb lub alpha globin noob lossis kev hloov hauv cov noob no. Tus kabmob no tuaj yeem ua rau pob txha pob txha. Lub puab tsaig sab plhu, hauv pliaj, thiab ntawm lub puab tsaig yuav hla mus tau. Ib qho ntxiv, hemoglobin H tus kab mob tuaj yeem ua rau:

• dajntoo
• tus qhov muag tsis tshua pom tseeb zuj zus
• mis tsis raug mob

Hydrops fetalis

Hydrops fetalis yog daim thalassemia uas hnyav heev uas tshwm sim ua ntej yug. Feem ntau ntawm cov menyuam uas muaj tus mob no kuj tseem yog menyuam tuag lossis tuag sai tomqab yug los. Tus mob no yuav loj tuaj thaum tag nrho plaub alpha globin noob hloov kho lossis ploj mus.

Thalassemia thiab anemia

Thalassemia sai tuaj yeem ua rau mob ntshav tsis txaus. Tus mob no yog cim los ntawm kev tsis muaj oxygen xa mus rau cov ntaub so ntswg thiab kabmob. Vim cov ntshav liab yog lub luag haujlwm xa cov pa oxygen, cov qe ntshav tsawg dua txhais tau tias koj tsis muaj oxygen txaus hauv lub cev ib qho li.

Koj cov ntshav yuav tsis mob me. Cov tsos mob ntawm tus mob anemia muaj xws li:

• kiv taub hau
• nkees
• txob taus
• txog siav
• tsis muaj zog

Kev mob ntshav siab ntsws tuaj yeem ua rau koj hla dhau. Cov mob hnyav tuaj yeem ua rau cov khoom nruab nrog cev tsis zoo, uas tuaj yeem ua rau neeg tuag taus.

Thalassemia thiab noob caj noob ces

Thalassemia yog cov noob caj noob. Txhawm rau txhim kho thalassemia tag nrho, ob qho tib si ntawm koj niam koj txiv yuav tsum yog tus muaj tus kab mob. Yog li ntawd, koj yuav muaj ob lub noob hloov zuj zus.

Nws kuj tseem muaj peev xwm dhau los ua tus cab kuj muaj cov thalassemia, uas koj tsuas muaj ib tus gene hloov pauv thiab tsis yog ob leeg los ntawm leej niam leej txiv. Neb ob leeg los yog ob leeg ntawm koj niam thiab txiv yuav tsum muaj tus mob lossis ib tug cov cab kuj ntawm nws. Qhov no txhais tau tias koj tau txais ib caj muaj cai los ntawm koj niam koj txiv.

Nws yog ib qho tseem ceeb uas yuav tau mus soj ntsuam yog tias koj niam koj txiv lossis ib tug neeg txheeb ze muaj qee yam kabmob tshwm sim.

Thalassemia me

Hauv alpha cov teeb meem me, ob lub noob yeej ploj lawm. Hauv beta menyuam yaus, ib lub gene ploj lawm. Cov neeg muaj tus mob thalassemia tsis tshua muaj tsos mob tshwm sim.Yog tias lawv ua li, nws yuav ua haujlwm ntshav tsawg. Tus mob yog dej num raws li alpha lossis beta thalassemia muaj hnub nyoog.

Txawm hais tias thalassemia muaj hnub nyoog tsis ua rau muaj tsos mob tshwm sim, koj tseem tuaj yeem ua tus cab kuj rau tus mob. Qhov no txhais tau tias, yog tias koj muaj menyuam, lawv tuaj yeem txhim kho qee hom kev hloov ntawm noob caj noob ceg.

Thalassemia hauv cov menyuam yaus

Ntawm tag nrho cov menyuam mosliab uas mob es mob ntshav qab zib txhua xyoo, nws tau kwv yees tias muaj 100,000 tus menyuam tau yug los uas muaj mob hnyav thoob qab ntuj.

Menyuam yaus tuaj yeem pib ua rau pom tsos mob ntawm tus mob thalassemia nyob rau thawj ob xyoos ntawm lub neej. Qee qhov pom tau pom tshwm sim muaj xws li:

• nkees
• dajntoo
• daj ntseg tawv nqaij
• tsis qab los noj mov
• kev loj hlob qeeb

Nws yog ib qho tseem ceeb rau kev kuaj mob thalassemia sai hauv cov menyuam yaus. Yog tias koj lossis koj tus menyuam niam / txiv lwm tus niam txiv yog tus xa khoom, koj yuav tsum tau mus kuaj thaum ntxov.

Thaum tsis kho, qhov mob no tuaj yeem ua teeb meem rau daim siab, lub siab, thiab tus po. Kev kis kab mob thiab lub plawv tsis zoo yog qhov ua rau muaj kev phom sij rau lub neej thalassemia hauv cov menyuam yaus.

Ib yam li cov neeg laus, cov menyuam yaus muaj mob thalassemia feem ntau yuav tsum tau mus tso ntshav mus pov tseg ntau ntxiv hauv lub cev.

Noj zaub mov rau thalassemia

Kev noj cov zaub mov uas tsis muaj rog, cog qoob loo yog qhov kev xaiv zoo tshaj plaws rau cov neeg feem coob, suav nrog cov neeg muaj mob thalassemia. Txawm li cas los xij, koj yuav tsum tau txwv cov zaub mov muaj hlau yog tias koj twb muaj ntshav ntau hauv koj cov ntshav. Cov ntses thiab nqaij yog cov nplua nuj hauv cov hlau, yog li koj yuav tsum tau txwv cov no hauv koj cov zaub mov noj.

Koj kuj tuaj yeem xav kom tsis txhob muaj cov khoom noj muaj zog, khob cij, thiab kua txiv. Lawv muaj cov kab ua haujlwm siab,.

Thalassemia tuaj yeem ua rau cov tshuaj folic acid (folate). Ib txwm muaj nyob hauv cov zaub mov xws li cov nplooj ntsuab tsaus thiab cov hauv paus, cov vitamin B no yog qhov tseem ceeb rau kev tso tseg cov teebmeem ntawm cov hlau siab thiab tiv thaiv cov ntshav liab. Yog tias koj tsis tau txais cov tshuaj folic acid txaus hauv koj cov zaub mov, koj tus kws kho mob yuav pom zoo kom noj 1 mg tshuaj noj ib hnub twg.

Tsis muaj ib txoj kev noj haus twg uas tuaj yeem kho tau thalassemia, tab sis ua kom koj noj zaubmov zoo yuav pab tau koj. Nco ntsoov tham txog kev pauv hloov kev noj haus nrog koj tus kws kho mob ua ntej.

Kev Soj Ntsuam

Vim thalassemia yog qhov muaj caj ces cuam tshuam, tsis muaj lwm txoj kev los mus tiv thaiv tau. Txawm li cas los xij, muaj ntau txoj hauv kev koj tuaj yeem tswj hwm tus kab mob los pab tiv thaiv cov teeb meem.

Ntxiv nrog rau kev saib xyuas kev noj qab haus huv txuas ntxiv, txhua tus neeg uas muaj kev cuam tshuam tiv thaiv lawv tus kheej los ntawm kev kis kab mob los ntawm kev saib xyuas nrog cov tshuaj tiv thaiv hauv qab no:

• haemophilus khaub thuas hom b
• kab mob siab
• meningococcal
• mob ntsws

Ntxiv nrog rau kev noj qab haus huv kev noj qab haus huv, kev tawm dag zog tsis tu ncua tuaj yeem pab tswj koj cov tsos mob thiab ua rau muaj kev muaj txiaj ntsig zoo. Kev nquag ua hauj lwm qis yog feem ntau pom zoo, vim tias kev tawm dag zog hnyav tuaj yeem ua rau koj cov tsos mob hnyav dua.

Taug kev thiab caij tsheb kauj vab yog piv txwv ntawm kev siv dhia ua si. Ua luam dej thiab yoga yog lwm txoj kev xaiv, thiab lawv kuj zoo rau koj cov pob qij txha thiab. Qhov tseem ceeb yog kom pom qee yam uas koj nyiam thiab pheej txav.

Lub neej tos

Thalassemia yog ib qho mob hnyav heev uas tuaj yeem ua rau muaj kev phom sij txog lub neej thaum tsis kho lossis kho mob. Txawm tias nws nyuaj los qhia txog lub neej muaj sia nyob ntev, txoj cai dav dav yog qhov mob hnyav dua, cov mob thalassemia sai dua tuaj yeem ua rau neeg tuag taus.

Raws li qee qhov kev kwv yees, cov neeg mob beta thalassemia - daim ntawv hnyav tshaj plaws - feem ntau tuag thaum muaj hnub nyoog 30. Lub neej luv luv tau ua nrog cov hlau ntau dhau, uas thaum kawg tuaj yeem cuam tshuam koj cov kabmob.

Cov neeg tshawb nrhiav txuas mus tshawb nrhiav kev tshuaj ntsuam genetic testing li tseem muaj tau ntawm kev kho noob. Kev kuaj mob thalassemia ntxov tau pom, koj yuav tau txais kev kho mob ntxov dua. Hauv lub neej tom ntej, kev kho noob hloov kho tuaj yeem ua kom rov qab ua tus hemoglobin thiab ua kom cov gene hloov pauv hauv lub cev tsis ua haujlwm.

Thalassemia mob li cas rau kev xeeb tub?

Thalassemia tseem tuaj yeem nqa cov kev txhawj xeeb sib txawv txog kev xeeb tub. Qhov cuam tshuam no cuam tshuam txog kev ua yug menyuam. Vim tias qhov no, cov poj niam muaj kab mob thalassemia tuaj yeem ntsib teeb meem kev muaj me nyuam.

Txhawm rau kom muaj kev noj qab haus huv ntawm koj thiab koj tus menyuam, nws tseem ceeb heev uas yuav tau npaj ua ntej kom ntau li ntau tau. Yog tias koj xav tau menyuam, tham nrog koj tus kws kho mob kom ntseeg tau tias koj nyob hauv kev noj qab haus huv zoo tshaj plaws.

Koj cov qib hlau yuav tau saib kom zoo zoo. Teeb meem hais txog kev ua si nrog cov kabmob loj yog qhov tseem ceeb.

Kev kuaj cev xeeb tub rau cov ntshav thalassemia yuav tau ua ntawm 11 thiab 16 lub lis piam. Qhov no ua tiav los ntawm kev ntsuas cov kua dej los ntawm lub plab yog tus me nyuam hauv plab.

Cev xeeb tub coj raws li cov kev pheej hmoo hauv qab no hauv cov poj niam uas mob thalassemia:

• qhov pheej hmoo siab dua rau kev kis tus kab mob
• mob ntshav qab zib gestational
• teeb meem hauv lub plawv
• hypothyroidism, lossis muaj cov thyroid tsawg
• ntau ntxiv ntawm cov ntshav ntxiv
• tsis tshua muaj pob txha ceev

Outlook

Yog tias koj muaj tus mob thalassemia, koj txoj kev pom yuav nyob ntawm seb hom mob. Cov tib neeg uas muaj tus mob thalassemia me los sis mob me yuav ua tau lub neej nyob tus.

Hauv cov teeb meem loj, lub plawv nres yog qhov ua tau. Lwm yam kev cuam tshuam nrog rau daim siab mob, kev ua pob txha tsis meej, thiab cov teeb meem endocrine.

Koj tus kws kho mob tuaj yeem qhia cov ncauj lus ntxiv txog koj qhov kev xam pom. Lawv tseem yuav qhia txog tias koj cov kev kho mob tuaj yeem pab koj lub neej zoo npaum li cas lossis nce koj lub neej ntev dua.