I thisenah harsatna a awm em? Hemoglobinopathy chungchang hi a awlsam zawngin i zir dawn teh ang!

I chau a, i chau fo em? I vun chu a hring deuh mai thei em? A nih loh leh in chhungkuaah thisen natna nei an awm em? Tichuan ka sawi tur che hi i tan a pawimawh hle a ni. Vawiin hian thisen natna pakhat Hemoglobinopathy tih kan sawi dawn a, a hming hi a buaithlak deuh a, mahse mi tam takah hmuh tur a awm. Ngaihtuah buai suh, he thu hi awlsam takin kan sawi dawn a ni.

Hemoglobinopathy hi eng nge ni? I han chhui chiang teh ang!

A awlsam zawngin sawi ila, hemoglobinopathies hi kan thisena protein, hemoglobin an tih, rochun natna chi khat a ni. Tunah chuan he hemoglobin hi eng nge a nih i ngaihtuah mai thei, a dik em?

Hetiang hian han ngaihtuah teh: hemoglobin hi kan thisen sen chhunga hero te tak te ang mai a ni. Kan thawk chhuah hian kan lung atanga oxygen la chhuakin kan taksa pum puiah a sem darh thintu a ni. Oxygen taxi ang maiin a che thin. Chuvangin he hemoglobin hi a siam tha tawk lo a nih chuan, a nih loh chuan kan taksa hian oxygen a hmu tlem hle a ni. Chutah chuan buaina chu a intan ta a ni.

Hetiang dinhmun hi rochun a ni a, chu chu kan nu leh pate hnen atanga kan rochun genes inthlak danglam vang a ni tihna a ni. Khawvel puma mi maktaduai tam takin he natna hi an tuar a ni. Dik tak chuan thisen rochun natna chi hrang hrang zingah chuan a tam ber a ni. Zirchiangtute chuan hemoglobinopathies chi hrang hrang 600 chuang an hmuchhuak tawh!

Kan taksain hemoglobin pangngai lo a siam chhuah emaw, a tling tawk lo emaw a nih chuan taksa na, hahna, leh taksa peng hrang hrang tihchhiatna ang chi symptoms a awm thei a ni. Chuvang chuan hriat hmasak a pawimawh em em a ni. Chuvangin doctor-te chuan naute an pian veleh hemoglobinopathy an test nghal vek a ni.

A pawimawh ber chu Hemoglobinopathy hi natna tihdam theih vek a ni lo tih hi a ni. Amaherawhchu, uluk taka enkawl chuan natna lan chhuah dan kan thunun thei a, harsatna kan veng thei bawk.

Hemoglobinopathie chi hrang hrang eng nge awm?

Kan sawi tawh ang khan hei hi chi za tam tak a awm a. Heng chi hrang hrangte hi English hawrawp hmanga hming an vuah fo thin. Letter-te hian hemoglobin protein chi hrang hrang leh zirchiangtute’n an hmuhchhuah dan tur a kawk a ni. Hei hian doctor-te chu a kaihhnawih genetic variation dik tak chu a hrethiam thei a ni.

Hemoglobinopathy chi hrang hrang zingah hian hetiang hi a ni:

• Hemoglobin C natna: Hei hi hemoglobin pangngai aiah hemoglobin C tih chi khatin a thlak a ni.
• Hemoglobin E natna: Hetah hian hemoglobin pangngai chu hemoglobin E in a thlak a.
• Hemoglobin D natna: Hetah hian hemoglobin pangngai chu hemoglobin D in a thlak a.
• Hemoglobin SC natna: 1.1.Hetiang dinhmun hi sickle cell gene pakhat leh hemoglobin C gene pakhat i rochun chuan a thleng thin.
• Hemoglobin SD natna: Hetah hian sickle cell gene pakhat leh hemoglobin D gene pakhat chu rochun a ni.
• Hemoglobin SE natna: Hetah hian sickle cell gene pakhat leh hemoglobin E gene pakhat chu rochun a ni.
• Sickle cell natna: Hetiang dinhmunah hian i thisen sen (red blood cells) te chu sickle ang maiin a lo awm ta a ni. Hei hian thisen kaltlangin awlsam taka an kal theih loh bakah a tikhawlo thei bawk.
• Thalassemias: Hetiang dinhmunah hian i taksain hemoglobin a siam tling lo.

Hei hi a buaithlak deuhin a lang thei a, mahse doctor chuan a hrilhfiah belh thei che a ni.

Hei hi eng symptoms nge ni? Hengte pawh hi i nei em tih en rawh...

Hemoglobinopathy natna lan chhuah dan hi mi hrang hrangah a inang lo thei a, mahse a lan chhuah dan tlangpui thenkhat chu a awm a:

• Kut leh ke lum vawt
• Zun thim (thim) .
• Chauh fo thin
• Naupangte hmasawnna tlai
• Vun leh mit sen (Jaundice) .
• Vun dum (pale skin) a ni
• Thâwk harsa, thawk hah
• A tlangpui aia mut tam
• A taksa peng hrang hrangte a hring chhuak

Naute hemoglobinopathy na tak nei te hian an pian tirh atangin symptoms an nei thei. A chang chuan, naupan lai hian symptoms a lo lang thin. Puitlingah chuan natna a zual zel (sickle cell crisis ang chi) hian heng symptoms te hi a na zual thei a ni.

Engvangin nge he hemoglobinopathy hi a lo awm?

A chhan ber chu i hemoglobin tichhe thei gene variation a awm vang a ni. He genetic variation hi i nu emaw, i pa emaw, an pahnih emaw hnen atangin i hmu thei a ni. Hei hi kan thunun theih thil a ni lo, rochan atanga lo chhuak a ni tihna a ni.

Hetiang hi tuin nge nei tam zawk? (Risk factor hrang hrang) 1.1.

Mi thenkhat chuan he hemoglobinopathy hi an vei tam zawk. Tute nge an nih hi han thlir ila:

• I thlahtute hi African, Mediterranean, Southeast Asian emaw West Asian atanga lo piang an nih chuan. (Heng dinhmunte hi Sri Lanka ramah pawh hmuh theih a ni)
• I nu, i pa emaw, i unaupa emaw hian hemoglobinopathy a vei a nih chuan.
• Nausen piang thar hemoglobinopathy screening neih fo lohna hmuna i awm chuan.

Hemoglobinopathy i neih chuan i fa pawhin he natna hi a vei theihna chance a awm. Chuvang chuan chhungkaw din hmain damdawi lam thurawn lak hmasak a pawimawh hle.

Hei hian eng harsatna nge a thlen theih?

Hemoglobinopathy hi uluk taka control a nih loh chuan harsatna hrang hrang a awm thei a ni. Chung zinga ṭhenkhat chu:

• Anemia: Hemoglobinopathy chi thenkhat chuan thisen tlakchhamna a thlen thei a, chu chuan thisen sen (red blood cells) a ti tlahniam thei a ni. Hei hian hahna leh chak lohna a tipung thei a ni.
• Infection tam tak: Hemoglobinopathy hian immune system a tichhe thei a , chu chuan natna leh hri kai theihna a tipung a ni.
• Organ chhiatna: Hemoglobinopathy hian thisenah oxygen level a ti tlahniam a. Hun engemaw chen chhunga oxygen tamna thisen a pek that loh chuan kan taksa peng hrang hrang leh taksa peng hrang hrangte a chhe thei a ni.
• Pain episodes: Hemoglobinopathies chi thenkhat, sickle cell natnaah chuan thisen kalna kawng chhungah thisen zam a lo awm a, a block thei a ni. Hei hian natna nasa tak a thlen thei a, thisen kal a ti tlem thei bawk.

Engtin nge he natna hi dik taka i hriat theih? (Diagnosis) tih a ni.

Doctor-te chuan hemoglobinopathy i vei em tih chiang taka hriat theih nan test eng emaw zat an nei a.

• Complete blood count (CBC): Hei hi thisen test hmasa ber a ni tlangpui. I thisena cell chi hrang hrang, chu chu cell chi hrang hrang i neih zat a hrilh thei che a ni.
• Genetic testing: He test hian eng genetic change nge a tel tih chiang takin a hriat theih a ni.
• Hemoglobin electrophoresis: He test hian i thisen sample atanga hemoglobin molecule te a then a, thil dik lo awmte a zawng thin.
• Iron study: He test hi iron-deficiency anemia i vei em tih hriat nan tih theih a ni.
• Nau piang thar screening: Canada leh America ang ram tam takah chuan nausen piang tharte chu hemoglobinopathy an neih leh neih loh endik an ni. Sri Lanka rama damdawi in thenkhatah pawh he facility hi an nei bawk.
• Prenatal testing: He test hmang hian nausen hian naupai laiin hemoglobinopathy a nei em tih hriat theih a ni.

Enkawlnate chu engte nge ni?

Hemoglobinopathy hi enkawl dan chi hrang hrang a awm a, mahse heng enkawlna hi natna chi leh nasat dan azirin a inang lo.

• Thisen pek: Thil awm dan thenkhat, thalassemia leh sickle cell natna te hian thisen a hemoglobin awm zat a nghawng a. Hemoglobin level pangngai vawng reng turin thisen pek a ngai mai thei.
• Folic acid tablets: Hengte hian thisen zam (red blood cells) siam chhuah a tipung thei a ni.
• Gene therapy hmanga enkawlna:Hei hi enkawlna thar tak a ni. Scientist te chuan i taksa atanga cell natna vei te chu an la a, technique bik hmangin an siam tha a, chutah chuan i taksaah an rawn luhtir leh thin. I genes-a instruction awmte kha ziak thar leh ang mai a ni.
• Iron chelation therapy: I taksaah iron tam lutuk i neih chuan he enkawlna hian iron tam lutuk chu a paih chhuak thei a ni. He damdawi hi ka ei emaw, injection angin emaw pek a ni.
• Oxygen therapy: I doctor chuan damdawi dang bakah oxygen therapy a rawt thei bawk. Hei hian a tum ber chu i thisena oxygen level tihpun leh natna tihziaawmna a ni.
• Stem cell transplant: Hei hian thisen sen pangngai lo chu thisen sen hrisel hmanga thlak a ni. Amaherawhchu, hei hi a tam vak lo, thawhtu tling hmuh a harsat avangin. Graft-versus-host disease (GvHD) vei theihna a keng tel bawk.

Hemoglobinopathy i neih chi hrang hrang a zirin enkawlna engmah i mamawh lo mai thei tih hre reng ang che. Chuvangin i doctor nen inbia a, i tana tha ber tur zawt la a tha ber.

Engtiang chiahin nge enkawl hnuah ka dam leh ang?

Hemoglobinopathy i neih chi leh a nasat danah a innghat tak zet a ni. Mi tam zawk chuan enkawlna an tan atanga kar tlemte emaw thla engemaw zat emaw chhungin an dam tan thin.

Hemoglobinopathy hi dam chhung zawnga natna a nih avangin medical test leh monitoring neih fo a ngai dawn a ni. I doctor chuan i symptoms te enkawl turin a pui ang che.

He natna vei te tan hian hmalam hun eng nge awm ang?

Enkawlna dik tak i neih chuan i hmalam hun a eng thei hle. Hemoglobinopathy vei zinga 90% aia tam chu puitlin thlengin an dam thei.

Mahse, enkawl loh chuan hemoglobinopathie chi hrang hrang tam tak hi a dam chhung kum engemaw zat chhungin thihna a thlen thei a ni. Chuvangin, a hmaa hriatchhuah leh enkawl hi harsatna lian tham lo thleng tur venna tha ber a ni.

Hei hi a veng thei lo em ni?

Vanduaithlak takin, ni lo. Hemoglobinopathy hi i rochun thil a nih avangin inven dan tur a awm lo. Amaherawhchu, enkawl dan mumal tak nen a natna lan chhuah dan chu kan enkawl thei a ni.

Engtin nge ka in enkawl ang?

Hemoglobinopathy nena nun hi thil harsa tak a ni thei a, mahse i in enkawl tha chuan natna leh side effect dangte i tihziaawm thei a ni.

I tanpui thei tur general tips thenkhat chu hetiang hi a ni:

• Tui tam tak in thin ang che. Ni khatah tui litre 2-3 tal in tum ang che.
• Taksa chak takin awm la, mahse ti lutuk suh. I taksa chu ngaithla rawh. I chau nia i hriat chuan chawlh hahdam rawh.
• Iron, vitamin leh mineral tamna ei tur ei thin ang che. I ei tur ah hian greens, thei, thlai, sa leh sangha te telh bawk ang che.
• I stress kha enkawl rawh. Meditation, yoga, emaw, i ngaihven zawng mindfulness technique dang hmang rawh.
• Kut sil fo thin ang che. Hei hian natna hrik lakah a venghim thei che a ni.

Engtikah nge Doctor ka hmuh ang?

Chauhna nasa tak, thawk harsa, vun hring ang chi symptoms i neih chuan doctor pan ngei ngei tur a ni a, chu chu hrilh ngei ang che.

Hemoglobinopathy i vei tih hmuhchhuah tawh i nih chuan i natna lan chhuah dan a lo let leh emaw, a zual emaw chuan doctor pan nghal rawh. I enkawl dan chu a siamrem thei a ni.

Doctor hnenah eng zawhna nge i zawh tur?

Nangmah emaw i fa emaw hian hemoglobinopathy i nei a nih chuan i doctor hnenah heng zawhnate hi zawh a tha ang:

• Kei/ka fa hian eng ang hemoglobinopathy nge kan neih?
• Eng ang enkawlna nge i rawt?
• Enkawlna atan specialist dang ka hmuh a ngai dawn em ni?
• Ka ei leh in emaw, ka exercise tih dan emaw ka thlak a ngai em?
• Ka fate hian he natna hi an neih theihna chance engzat nge ni?
• Hemi chungchangah hian thu belhchian dawl zawk i nei em? (e.g. lehkhabu, website) .

Engtikah nge Emergency Treatment Unit (ETU) ah i kal a ngaih ?

A hnuaia symptoms te hi i neih chuan 911 (Sri Lanka-ah 1990) ah call emaw, emergency room hnai ber pan nghal rawh:

• A rilru a na
• Luak chhuak thei
• Khawsik chu 103 degree Fahrenheit (39.4 degree Celsius) aia sang a ni.
• Damdawi ei chung pawha reh ngai lo natna nasa tak
• Stroke chhinchhiahna, entirnan, hriatna hloh thut, tawng harsa.

Engtin nge hemoglobinopathy hian ka A1C hi a nghawng?

Hemoglobinopathy hian i A1C test result a dik lo thei a ni. I genetic variant a zirin i neih tak tak aiin value hniam zawk emaw, sang zawk emaw a lantir thei.

Hemoglobinopathy i neih chuan i doctor chuan he harsatna hi tihziaawmna tur test neih a rawt thei ang. He A1C hi zunthlum vei tan a pawimawh hle a, chuvangin hemi chungchang pawh hi i doctor nen inbiakna neih theihnghilh suh.

A tawp berah chuan hriat reng tur pawimawh ber berte!

Nangmah emaw, i fa emaw hian dam chhung thisen lama harsatna an nei tih i hriat chuan hlauhna leh lungkhamna i neih hi thil pangngai a ni. Zawhna hrang hrang "Hemoglobinopathy hian engtin nge ka nun a nghawng ang?", "Natna ka nei reng dawn em?", "He natna hian engtin nge ka fa a nghawng ang?" i rilruah a lo chhuak thei a ni.

Mahse thu lawmawm tak chu enkawl dan dik leh symptom control a nih chuan a hrisel thei ang berin i nung thei a ni.I tih theih tha ber chu i doctor nen inbia a ni. Tikhawtlai suh. A hmaa hriatchhuah leh enkawl hi dam rei leh hrisel tak neih theihna tur kawng pawimawh tak a ni.

Lungngai suh, nangmah chauh i ni lo. Doctor, nurse leh i chhungte chuan he zinkawngah hian an pui ang che. Huaisen takin awm rawh!

` Hemoglobinopathy, thisen natna, thlahtu natna, hemoglobin, thisen tlakchhamna, sickle cell natna, thalassemia