I vun, i sam leh i mit chu a danglamin a eng em? Oculocutaneous Albinism (OCA) vang a ni thei ang em?

Mi thenkhat vun leh sam dum tak tak, a chang chuan var pawh nei i hmu tawh em? An mit pawh a eng a, ram dang atanga lo kal ang maiin. I chhungte zinga pakhat emaw, i thian emaw, i fa ngei pawhin heng mizia hi a nei ve mai thei. Damdawi lamah chuan hei hi Oculocutaneous Albinism (OCA) kan ti a. Hlau suh, a hming chu a sei deuhin a ri pawh nise. Hei hi thil awm lo, chu chu a tlem hle, genetic condition a ni. Vawiin hian awlsam takin kan sawi dawn a, in hriatthiam theih nan.

Tunah chuan he albinism (OCA) hi eng nge a nih a, engvangin nge a lo awm tih hi i ngaihtuah tawh ngei ang, a dik em? A awlsam zawngin kan taksaah hian kan vun, sam leh mit rawng pe thei thil a awm a, chu chu melanin an ti a ni. Paint ang mai a ni. He melanin hi kan vun, sam leh mit rawng danglam bik petu a ni. Chuvangin, albinism vei te chunga thil thleng chu an taksain he melanin hi a siam tha thei lo emaw, an taksa pum puiah a sem darh thei lo emaw a ni. Ngaihtuah teh, paint a tlahniam deuh chuan a rawng a eng zawk thin. Chuvang chuan an vun, an sam leh an mit chu beisei aia eng zawkin a lo awm ta a ni. Hetianga melanin tlahniam hian hmel lan dan chauh a nghawng lo va, he melanin hi kan mit hnathawh that nan a pawimawh hle bawk.

Hetianga hmel inthlak danglamna hi mi thenkhat tan chuan a zahthlak deuh thei a, khawtlang nunah danglam taka lang tur hian zak leh lungkham deuh deuha inhriat hi thil pangngai tak a ni. Tin, mit a nghawng dan hian nitin hna thawh a ti harsa thei bawk. A lungchhiatthlak tak zet thei. Mahse, a tha ber chu, he dinhmunah hian mit chunga nghawng a neih tihziaawmna tura pui thei tur enkawlna a awm a ni.

Engtin nge albinism (OCA) i vei tih i hriat theih ang? Eng nge a lan chhuah dan?

Hetiang albinism (OCA) natnaah hian i hmuh theih tur symptoms bakah hian doctor chauhin special test hmanga a hriat theih tur symptoms a awm bawk. Eng nge an nih i han thlir teh ang.

Vun leh sam hmuh theiha inthlak danglamna

Hei hi albinism (OCA) symptom langsar ber leh hmuh awlsam ber a ni.

• Sam inthlak danglam: Albinism (OCA) vei te hian sam var emaw, rawng sen/rangkachak rawng hring tak tak emaw an nei thei. Hei hi naupang tê têah a tam hle. Mahse, an upat deuh deuh chuan, naupan lai emaw, tleirawl lai emaw ang chiah hian an sam chu eng emaw chen a rawng a lo nei tan thei a ni. Mitmeng, mitmeng leh taksa sam dangte pawh a var emaw, a eng emaw pawh a ni thei.
• Vun inthlak danglamna: Albinism (OCA) i neih chi hrang hrang a zirin i vun hi a sen hle mai thei. Mi thenkhat vun chu a eng lutuk a, translucent angin a lang thei a, chu chu vun chu a hring hle a, hmuh theih a ni tihna a ni. Mi dangte chuan naupang an nih laiin an tan lo mai thei a, mahse an upat deuh deuh chuan vun rawng a danglam deuh thei bawk.

Mit a symptoms leh discomfort hmuh tur a awm

Albinism (OCA) hian mit rawng a tidanglam thei hle bawk.

• Albinism (OCA) i neih chuan i mit iris hi a rawng blue/light gray tak a ni thei. A châng chuan êngin i mit a rawn deng chuan iris chu pink emaw, sen emaw angin a lang thei bawk. He rawng hi i dam chhung zawngin a danglam thei bawk. Mahse, albinism (OCA) chi thenkhat chuan mit sen a thlen thei bawk.

Mit lama harsatna dang i neih theihte chu:

• Mit lama harsatna: Mit hmuh fiah lo, mit pahnih, mit hmuh tlem emaw.
• Photophobia: Chumi awmzia chu ni eng emaw, eng eng emaw laka mit khap reng a harsa a, i mit chu a sen a ni.
• Mit pahnih hnathawh dun dan inthlak danglamna: Strabismus ang chi dinhmun, mit hian kawng khata a kawhhmuh lohna, leh mit pahnih thil hmuh chu thlalak pakhata inzawmkhawm harsatna (binocular vision dysfunction).
• Mit chet chak tak, thunun loh (Nystagmus): Hei hian a ti thinrim hle thei.
• Mit pianzia inthlak danglam vanga mit hmuhna (blurred vision) (Refractive errors): Glasses mamawhna ang chiah.

Mit enfiah laiin doctor-in a hmuh thin

Mit doctor hnena i kal hian enfiahna neih chhunga a zawn tur symptom dang a awm a:

• I mit (iris) chhunga ring dum chu a te lutuk a, i mit i enfiah chuan a chhungah êng a kal tlang tih i hmu thei.
• I mit (retina) pianzia a inthlak danglam thei a, chu chuan i mit hnathawh dan a nghawng thei a ni.
• Mit leh thluak inzawmkhawmtu optic nerve structure-ah hian inthlak danglamna a awm theihna chance a sang hle. Hei hian thluak in i thil hmuh a process dan leh khawvel i hmuh dan a nghawng thei a ni.

Symptom dang awm thei te

Albinism (OCA) chi thenkhat, emaw, a thlentu natna dang emaw hian chhinchhiahna leh nghawng bik dang a thlen thei bawk. Entirna thenkhat chu:

• Thinlung lama harsatna nei te
• A san zawng a inthlak thin
• Muscle control lama harsatna emaw, chetna lama harsatna emaw a awm thei

Mahse, heng ang symptom dang hi albinism (OCA) rarest form-ah a awm thung. I doctor chuan i (or naupang i enkawl) i tawn theih tur symptoms chungchangah thurawn tha ber a pe thei che a ni.

Engvangin nge he albinism (OCA) hi a lo awm?

Albinism (OCA) hi kan DNA a inthlak danglam (mutation) vang a ni a, chu chu kan taksain melanin a siam chhuah dan tichhe thei genetic defect tihna a ni. Chuvangin, genetic condition a ni. A thlen theih dan kawng hnih a awm a:

• Nu leh pa atanga rochun: A tam zawkah chuan albinism (OCA) hi nu leh pa atanga rochun genetic defects (mutations) avanga lo awm a ni. Chungte chu autosomal recessive angin an inherit reng thin.A awlsam zawngin, naupang chuan he natna hi a nei dawn tihna a ni a, chu chu an nu leh pa te hnen atanga gene chhia an rochun phawt chuan a ni. An pahnih zinga pakhat chauh atanga lo chhuak a nih chuan a tawk lo.
• Embryonic stage-a thil thleng random changes: A châng chuan, naute dam tirh lamah random change in genes a thleng thei a, nu leh pate hnen aṭanga rochun a ni lo. Doctor-te hian hetiang thil hi a thlen chhan chiang takin an hre lo va, an sawi lawk thei lo bawk.

Albinism (OCA) vang hian eng harsatna dang nge awm thei?

Kan sawi tawh ang khan melanin hi a venghimtu pigment a ni. Kan taksa hian ni atanga UV radiation tha lo tak tak hip lut turin a siam chhuak thin. Chuvang chuan albinism nei lote chuan ni chhuahna hmuna an chhuah hian an tan tlangpui. He UV radiation hian kan vun cell-a DNA a tichhia a ni. Hetiang chhiatna hian vun cancer a tipung a, a bik takin basal cell carcinoma leh squamous cell carcinoma te a tipung a ni. UV radiation atanga chhiatna hi cumulative a nih avangin chhiatna a tam poh leh cancer vei theihna a sang zawk. Albinism vei te hian melanin an nei tlem avangin ni laka an vun venhim a pawimawh hle.

Engtin nge doctor hian albinism (OCA) hi dik taka a hriat theih?

Doctor chuan i vun, i sam leh i mit a inthlak danglam tih an hriat chuan OCA i nei tih a ringhlel thei. Kum naupang tak atanga hmuhchhuah a ni fo. Naupang enkawltu doctor-te hian he natna hi an hriat theih nan an pui hmasa ber a ni. Doctor-te chuan OCA finfiah nan leh a chi bik hriat chian nan kawng hrang hrang an hmang thei a ni.

Chutiang hmanraw thenkhat chu:

• Taksa enfiahna
• Thisen test a ni
• Mit enfiah a ni
• Genetic testing neih a ni
• Visual evoked potentials (VEP) hmanga enfiah a ni
• Optical coherence tomography (OCT) hmanga enfiah a ni.

Albinism (OCA) enkawlna tur a awm em?

Dik tak chuan albinism (OCA) hi damdawi a awm lo. Mahse, he natna nena inzawm natna tihziaawmna tur enkawlna engemaw zat a awm.

Albinism (OCA) vei te tana ngaih pawimawh ber chu mit natna kaihhnawih enkawlna a ni a, chung zingah chuan:

• Mit lazy (Amblyopia) 1.1.
• Mit hrual (Strabismus) 1.1.
• Refractive tihsual a awm

I mit doctor chuan photophobia tihziaawmna tur leh ni êng laka i mit ven nan sunglass emaw tinted lens emaw vuah turin a rawt mai thei.

Damdawi pakhat bik nitisinone (brand name Ntyr® emaw Orfadin® emaw) tih a awm. Oculocutaneous albinism type-1 vei tan pawh a tangkai hle tih hmuhchhuah a ni. Nitisinone hian kan taksaa amino acid pawimawh tak tyrosine tih chu a chhe vek tih control-in hna a thawk a ni. Kum 2019-a zirchianna pakhatah chuan nitisinone hian albinism type-1 vei puitling panga chu vun rawng (skin pigmentation) siamin, mit hmuhna a tichak tih hmuhchhuah a ni. Researcher-te chuan kum naupan lai atanga damdawi hman tan chuan a hlawk zawk thei niin an ngai bawk.

Enkawl dan tur relnaah hian thil tam tak a kal tih hre reng la, chuvangin i mit lama mithiam chauhvin nangmah (leh i fate) tana enkawlna tha ber berte chu a pe thei che a ni. Ani emaw ani emaw chu i kaihruaitu a ni ang.

Albinism (OCA) natna vei hi eng ang nge ni?

Oculocutaneous albinism (OCA) hi dam chhung zawnga natna a ni. Mi hrang hrangah a nghawng dan a inang lo thei. Mi tam tak chuan an mit, sam leh vunah inthlâk danglamna an hmu a. Mi thenkhat chuan heng inthlak danglamna te hi chiang takin an hmu a, thenkhat erawh chuan chutiang chuan an hre lo mai thei.

Albinism (OCA) vei tam tak chuan he natna nena inzawm hriselna lama harsatna an nei a, a bik takin mit lama harsatna an nei a ni. Mahse, nunna atana hlauhawm emaw, nunna atana hlauhawm emaw harsatna hi a tlem hle. A pawimawh ber chu ni eng leh UV radiation dang atanga vun tihchhiat loh nan a ni.

Doctor thurawn i zawm fo a, i mit i enkawl fo chuan albinism (OCA) vei tam zawk chuan midang ang bawkin nun pangngaiin an hmang thei a ni. He natna hian i dam chhung a nghawng lo tlangpui a, a bik takin vun cancer ang chi harsatna i pumpelh chuan.

Albinism (OCA) hi mi dangin awlsam takin an hmu thei a, a nih loh leh chutiang taka langsar lo thil a ni thei bawk. Hetiang dinhmun nena nun hian – hmuh theih emaw hmuh theih loh emaw pawh nise – harsatna a keng tel thei a ni. Mahse, chûngte chu ṭanpuina i zawn theih tûr harsatnate a ni. Nangmah emaw, i enkawl naupang emaw hian albinism (OCA) symptoms a neih chuan doctor emaw, mit lam doctor emaw pan a tha ber. Anni hian i dinhmun hriatthiamna kawngah an pui thei che a, i tanpui thei tur enkawlna leh hmanrua zawng turin an pui thei bawk che a ni.

He thawnthu a\anga kan hriat reng tur pawimawh tak takte chu

Okay, chuvangin vawiin a kan sawi tawh atang hian kan ngaihtuah reng tur thenkhat chu hetiang hi a ni:

• Oculocutaneous albinism (OCA) hi thlahtute atanga lo chhuak a ni. Kan vun, sam leh mit rawng pe theitu pigment melanin siam emaw, sem darh emaw a chhiatna a ni.
• Hei hi damchhung dinhmun a ni a, mahse a kaihhnawih harsatna lo awmte chu a enkawl theih a ni.
• A pawimawh ber chu ni laka i vun venhim hi a ni.Melanin tlem zawk hian vun cancer vei theihna a sang zawk tihna a nih avangin sunglass, lukhum, thawmhnaw sei, leh sunscreen tha tak bun a pawimawh hle.
• Tin, i mit pawh a bik takin i ngaihven tur a ni. Mit doctor hnenah thurawn dil fo thin ang che.
• Hetiang dinhmun avanga lungngaih leh lungkham hi thil pangngai tak a ni. Doctor, chhungte, thian rintlak hnen atanga tanpuina dil hlau suh.
• Albinism (OCA) nei mah la, midang ang bawkin nun hlim tak, hlawhtling takin i hmang thei tih hre reng ang che!

Hemi chungchanga zawhna dang i neih chuan doctor nen inbia ngei ang. Ngaihtuah buai suh, engkim chinfelna a awm.

` Albinism, OCA, vun natna, mit natna, genetic natna, melanin, ni laka invenna