Vitiligo na naraba meyoibada samajgi mityeng

(Quality of life of a vitiligo patient)

Vitiligo leina ashi samajgi mityengda yamna maruoiba leina ama oiri amasung nariba miyoibaduna samajda phida ama lounaba hotnabada achouba cheitheng ama oibagum touri.Makhada panjariba wareng singsina maram oiraga Vitiligogi anaba singda hena pukning wakhal ninghanabagi/  sonthahanabagi machak ama oihanba yai ,adubu achumba ashanba mityeng amaga loinana khanthaba matamdadi,wakhal lousing hena singbada natana,pukninggi oiba panggalda mathou hapnabagi kanaraba machaksing oigani haibagi achetpa thajaba lei.

Atopa wareng kayada,Vitiligogi maramda sugaina paodam kaya ama thengnabikhare amadi Vitiligogi houjikki oriba anabagi phibham,wakhal lousing kaya ama liebiramlagani.Chamna hairabada Vitiligo di,Unshada natraga mapramgi saruk amada hekta,maram ekhang khanghoudana,ngouthorakpaduni.Leina asina,hakchanggi nunggi oiba phibhamda ayambana akaiba leite amadi mahousagi punshi mahingda thoidokna akaiba thokhande.Adubu,ngouthorakpa dakpham kayaduna,yengbada phajadaba da natana, samajda atoppa miosingna lana thajanaduna hek hek lanna loubiba,inthokpiba,hangoinaba amadi laithunggumna khanabana maram oiraga,anabadugi pukning wakhalda achoua cheitheng pi.Mashimakni Vitiligo gi tragedy(nungaitaba saktam).

India gi ahanba Prime minister,(Late) Pt.Jawaharlal Nehruna ,India gi khawaidagi maru oiba leina ahumgi manungda Vitiligo bu ama oina khangatlami.Atopa anidudi,Leprosy amasung Malaria ni.Akonbagi leina anisimadi,hakselgi lamda,policy maker singna,Govermentna achouba policy program kaya ama paikhatuna amadi leptaba thouramsing mathang mathang kayana,mapung phana lakshinba ngambadagi hendoktuna,pukmut muthatpa yabagi khongthangda nakshinlakle haiba yai.Samajna,Leprosy amadi Malaria mayek sengna khangle haina louba yare amasung leina anisida,samajgi mityengsu yamna chaona ahongba porakpa ngamle. Laibak thibadi,Vitiligo leinadi hiramsigsida yama sothana leihoure amasung,Sarkargi obia,policy makersingna,Vitiligogi maramda,phida macha amatasu pibidari amasung,leinasina maram oiraga,thokhhanliba psychological(pukning wakhalgi oiba phibham) dudi chaona adum leiri.Vitiligogi loukhatkadaba khonthang kaya,samajda lanpham kaya ama thengnabagi darkar oiri.Maramsina eikhoi punna hiramsida lepminaba mathoutari.Discrimination and prejudice against Vitiligo punna thengnaminaduna “Colours redefined with dignity”taseng tasengna puraknaba hotnaba thengmanle,eikhoi tumina leithokpa yade.Policy makers singsu,layengliba doctor singsu,samajsu,loinana Vitiligo gi anaba sing pumba hiramsida mikapthokhanduna punna hotnaminaba amadi leinasi gi maramda lana thajanaba ,discrimination toubiba na chingba thengnaminaba tangaiphade.

India gi samajdi ayambana dharmada(religion) yumpham oiba samajni.Maramsina oihanlamba yai,Vitiligo bu dharma(religion) ga konsannaduna,Vitiligo di mamanggi mapokki papki maheini,ahal-laman-laiguru singna shap(cursh) ki maheini,migi mapot huralubagi maheini haibiduna tathi taoina loubiba thoktaba nate.Maramsina,Vitiligona sakchu,kuchunachingba yengbada nungngaitaba ta natana,samajda achouba pamdaba saphu ama hek hek oihanbagum touri.Maru oina yumpandribi leishabishingda,yumbanlonda nouna khongdarakliba singda hena pukninggi cheitheng piganli.Nupa-nupi yumbanlongi mari tatnaba,leisabisingna yumpanbagi lambida akaiba thoktaba nate.

Maramsingsi samlapna hairabada Vitiligo na maram oiduna,meoibadugi punshi mahingda,hingnabagi lambida(quality of life) ta achouba onateinaba thokhali.Unsada ngouthopana maram oiraga,dakpham kaya leihanli amasung masina maram oiraga,self body image da(chungphiran chumna,kuchukumen sengna,ishagi oijaba mimang thokpa ngambagi panggal) chaona thajaba manghanli amadi wakhal pukninggi nungnagba pi.Vitiligo gi anaba kayana,masana masbu,thajaba mayeng tahanba,pukning sonthahanba amadi masana masabu samajdagi tokhaijare khanjanabagi machak oihanli.Anabadugi masagi phibhamda soinaibana maram oiduna,samajdagi,tokhainingba miyoi oihanba,lanna lounaba ,inthokpiba(ostrisisam),oibadagi,meyoibadu depression(pukning wakhal sonthaba,wakhal thoktaba)oihanli.Maramsina anaba masanasu masana  negative feeling(hanthana loujaba/mimanadabani khanjaba) oihanba yai.Maram ashina Vitiligo anabasingda hena sensitive(khoishounaba) oiba,mina tuhatpireda khanjaba oibadagi,marup mapang mangshinlakpa da gi hedoktuna masagi sinphamda akaiba thokhanduna,chaona sel-thumgi phibhamda akaiba oihanli.Amaromdasu,Vitiligo gi anaba amabu,thabak supham pibidaba,pibirabasu khara hanthana loubiba thoktaba nate.

Amukasu,Vitiligo anabasingda,hena sel thumgi phibhamda mayeng tahanabagi machak khara panlabada,matam sangna layengba darkaroiba,toina toina hakshelgi center singda chatpa darkaroiba,PUVA amadi lights(energy base systems) singgi laying lounabagi damak toina amadi matam changna,layenphamda chatpa tai aduna thabak sugadaba chatkadaba matam kaya ama manghanba, sel chading toubana tansinbadagi helhanba, tangkaksing ama hek hek oihanli.Hiramsina,angangsinda yengluba matamdasu,angangdugi,nursery-school na chingba chatpada akaiba thokhanba aduga,mahaka loinaba taba mapa-mama/ahal-amagi matamsu adum chennei.

Vitiligo gi chapchaba phare haiba layeng leitari.Phahanba ngamdari haininge.Ngamdabamakti natte,leibak phaba kaya phagatli.Layengbagi hiram kaya asi matam changi.Phagatlakpa matamdasu,kuchugi phibham singsi chang manana (uniform) sengna phagatkande,marang marang touganli,masinasu hena anabadugi quality of life ta akaiba piba yai.

Mental stress na maram oiraga,Vitiligo thokhanli, natrabasu henjanhanli haiba chaona thajanaba lei.Stress na maram oiraga “neuroendocrine hormones” hena sunghanli amasung chemical asina  hakchanggi immune system da cheitheng piduna Vitiligo oihanlakpa singsigi maram amani haina chaona thajanei.DLQI(Dermatology life quality index) scale sijanaduna,Vitiligo na naraba meyoibadugi masagi psychological difficulties/acceptance,loinana samajda masana yumpham semjaba ngamba gi pangal score touba yai.Paodam kayada DLQI henna scace/leiba anaba singda,layengabaigi upai amahekta sijanaba matamda,anabadugi phagathanba ngambagi chang hanthei haibasi mayek sengna paodamli.Haibadi strees henba anabasingda layengbada mai pakpagi chang hanthei haibani.Maramsing ashidagi Vitiligo gi anaba singgi Quality of  life phagat-hanba tangaiphade.

Matangsida neinaba yaba upaisingna:

a)Samajna Vitiligo  anabasingda yengliba mityeng/lana thajanabagi chatnabi chaona semdokpa darkar oi.Vitiligona,samna-soknabada kaide,hakchanda sokhande,tasengna khanghanba tai amadi Vitiligo bu chamna louba tai.Vitiligo gi anabasingbu discrimination natraga prejudice touroidabani .

b)Vitiligo na naraba meyoi nasu masana masabu hanthana loujabagi,lana thajabagi,samajdagi lapthokningba wakhal thadokpa    darkar oi.Lotsanduna thamba na akaiba, aranba wakhal kaya pokhanba yai.Matam channa niyom chumna layengba darker oi.Thounaphana,achetpa thamoi tangaiphadana semgatnaba hotnagani amadi akhang aheisingi mateng lougani.

c)Body image hena phagathananaba,comestic sing,niyom chumna mateng louba yai.Chemoflage system(dakpham lotasanaba,achamba unsha soktaba chemical sing) sijinaba yai.Hiramsida toptopa sugaina neinaba paodam ama thamjarakhni.

d)Pukning wakhal phathanaba/ingthanaba sajel sing, aphaba hobbysing,eshei nongmai,jagoi(wakhal nungaihanba yaba) upai sing sijinaba yai.YOGA gi pambei kaya sijinabana,hakchang kayat phagathanba,anaayek sing kokhanba na chingba ngami haiba akhang aheisingna yanaraba sajelsingni.YOGA di religion ga mari leinade haininge,sanglaba pukning- wakhal amadi hakshelgi  sajelsingni.YOGAgi matemg na vitiligo na piriba wakhal pukningi cheithengda chaona kanahagani amasung,layengbagi hiramda tangaiphadana hapchinba ngamlabadi soidana kanagani.

e)Physicians/dermatologists singna wakhal loushing share(paodamnaduna),anabasingbu layenbirabadi,Vitiligo gi anabasinggi  pukningi ethilda ,thajaba helhanba,pukning wakhal phaodoknaba helhanduna,anabasingi thamoi chaothokhanduna kannaba pigani.Physician singna Vitiligo bu laina loubiroidabani.Tashengna,tangaiphadana layengdaba yadaba amadi anabadugi pukning wakhalgi ethilsu khangna loinab darker oi.

“COLOURS REDEFINED WITH DIGNITY”

Dr. Karam Lokendro, MD