Ալբինիզմի տեսակներն ու ախտանիշները
Պիգմենտի բացակայության ֆիզիկական դրսևորումները
Այս հոդվածում
- Տեսակներն ու նշանները
- Ախտորոշում
- Կյանքը ալբինիզմի հետ
Ալբինիզմը իրենից ներկայացնում է ժառանգական խանգարումների մի խումբ, որոնց դեպքում հիվանդի մաշկում, աչքերում և մազերում պիգմենտի (գունակի) քանակը լինում է նորմայից քիչ, կամ ընդհանրապես բացակայում է։ Ալբինիզմով տառապող մարդիկ (այլ կերպ հայտնի է նաև որպես բնածին հիպոպիգմենտային խանգարում անվամբ), ունենում են բավականին գունատ դեմք և շատ զգայուն են արևի ճառագայթնփրի նկատմամբ․ նրանք նաև հակված են աչքերի հետ կապված խնդիրներ ունենալու։ Գոյություն ունեն ալբինիզմի շատ տեսակներ, որոնցից և ոչ մեկը չի ազդում կյանքի տևողության վրա։ Սովորաբար ալբինիզմի ախտանիշները հեշտ կառավարելի են։ Այս խանգարումները բավականին հազվադեպ են հանդիպում և հավասարապես դիտվում են ինչպես կանանց, այնպես էլ տղամարդկանց մոտ։
Ալբինիզմը ակնհայտորեն երևում է երեխայի ծնվելու պահին։ Եթե դուք ունեք բնածին հիպոպիգմետնային խանգարմամբ նորածին երեխա, ապա նա չի ունենա որևէ առողջական խնդիր, սակայն դուք պետք է հատուկ կանխարգելիչ միջոցառումներ իրականացնեք, որպեսզի պաշտպանեք ձեր երեխայի աչքերն ու մաշկը արևի ճառագայթների ազդեցությունից։ Ինչպես նաև լավ կլինի, որ պատրաստեք նախ ինքնրեդ ձեզ, ապա ժամանակի ընթացքում նաև ձեր երեխային, այն բանին, որ շրջապատը հետաքրքրասիրություն է արտահայտելու երեխայի արտաքին տեսքի նկատմամբ։
Տեսակներն ու նշանները
Գոյություն ունեն ալբինիզմի շատ տեսակներ, բայց այս տերմինը հիմնականում վերաբերվում է հետևյալ երկու հիվանդություններին՝ ակնամաշկային ալբինիզմ (ԱՄԱ, oculocutaneous albinism) և ակնային ալբինիզմ։ Կան ԱՄԱ-ի 3 տեսակներ՝ ԱՄԱ տիպ 1, ԱՄԱ տիպ 2 և ԱՄԱ տիպ 3։
Ալբինիզմի յուրաքանչյուր տեսակ առաջանում է կոնկրետ քրոմոսոմի կոնկրետ գենի մուտացիայի պատճառով, որի հետևանքով առաջանում է մելանոցիտներ կոչվող բջիջների դիսֆունկցիա։ Այս բջիջները արտադրում են մելանին կոչվող պիգմենտը, որով էլ պայմանավորված է մաշկի, աչքերի և մազերի գույնը։ Այլ կերպ ասած՝ մելանինից է կախված, թե ինչ-որ մեկը շիկահեր է, թե սևահեր, ունի կապույտ թե շագանակագույն աչքեր, և այդպես շարունակ։
Ալբինիզմը կարող է առաջանալ որպես առանձին խանգարում, կամ լինել մեկ այլ հիանդության ախտանիշ, օրինակ՝ Չեյդակ-Հիգաշիի համախտանիշ, Հերմանսկի-Պուդլակի համախտանիշ և Վարդենբուրգի համախտանիշ։
Ալբինիզմի բոլոր տեսակների դեպքում դիտվում է պիգմենտի որոշակի անբավարարություն, սակայն նրա քանակը տատանվում է՝
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- ԱՄԱ տիպ 1-ի դեպքում մաշկում, աչքերում և մազերում պիգմենտը սովորաբար ամբողջությամբ բացակայում է, սակայն որոշ մարդկանց մոտ կարող է դիտվել պիգմենտացիայի չնչին աստիճան։ ԱՄԱ տիպ 1-ի ժամանակ նաև դիտվում է ֆոտոֆոբիա (զգայունություն լույսի նկատմամբ), տեսողության սրության նվազում և նիստագմ (աչքերի ակամա շարժումներ)։
- ԱՄԱ տիպ 2-ը բնորոշվում է մաշկի, աչքերի և մազերի նվազագույնից մինչև չափավոր աստիճանի պիգմենտացիայով, ինչպես նաև դիտվում են ԱՄԱ տիպ 1-ի դեպքում հանդիպող աչքերի հետ կապված խնդիրներ։
- ԱՄԱ տիպ 3-ը երբեմն դժվար է լինում հաստատել դատելով միայն արտաքին տեսքից։ Այն ավելի շատ նկատելի է, երբ մուգ մաշկ ունեցող ծնողների մոտ ծնվում է շատ բաց գույնի մաշկ ունեցող երեխա։ ԱՄԱ տիպ 3-ով հիվանդները սովորաբար ունենում են տեսողության հետ կապված խնդիրներ, սակայն այդ խնդիրները ավելի թեթև են քան ԱՄԱ տիպ 1-ի կամ տիպ 2-ի ժամանակ դիտվողները։
- Ակնային ալբինիզմը ախտահարում է միայն աչքերը՝ բերելով նրանց նվազագույն պիգեմնտացիայի։ Ծիածանաթաղանթը կարող է ունենալ թափանցիկ տեսք։ Իչպես նաև կարող են առաջանալ տեսողության սրության նվազում, նիստագմ և աչքերի շարժումները կառավարելու դժվարություն։
Ախտորոշում
Հիվանդությունը կարելի է հայտնաբերել գենետիկական հետազոտության միջոցով, սակայն այս մեթոդը շատ հազվադեպ է անհրաժեշտ լինում և սովորաբար չի կիրառվում։ Ալբինիզմին յուրահատուկ ֆիզիկական նշաններն ու ախտանիշները սովորաբար բավարար են լինում այս հիվանդությունը ախտորոշելու համար։ Նշենք նաև, որ կախված նրանից, թե հիվանդությունը որքանով և ինչպես է ախտահարում ստորև նշված մարմնամասերը, տարբեր մարդկանց մոտ այն ունենում է բավականին տարբեր դրսևորումներ։
Մազերի գույն
Մազերի գույնը կարող է տատանվել բաց սպիտակից մինչև շագանակագույն, և որոշ դեպքերում անգամ կարող է ունենալ հիվանդի ծնողների կամ քույր/եղբայրների մազերի նման գույն։ Աֆրիկական կամ Ասիական ծագում ունեցող ալբինիզմով հիվանդները կարող են ունենալ դեղին, կարմրավուն կամ շագանակագույն մազեր։ Երբեմն հիվանդների մազերի գույնը տարիքի հետ մեկտեղ գնալով մգանում է՝ ջրում և շրջակա միջավայրում առկա հանքային աղերի հետ շփման արդյունքում։ Թարթիչներն ու հոնքերը սովորաբար շատ գունատ են։
Մաշկի գույն
Ալբինիզմով հիվանդի արտաքին տեսքը կարող է ինչպես տարբերվել, այնպես էլ շատ նման լինել իր ընտանիքի անդամների տեսքին։ Որոշ մարդկանց մոտ կարող են առաջանալ պեպեններ, խալեր (նեռարյալ վարդագույն, առանց պիգմենտի) և խոշոր պեպենանման բծեր, որոնք կոչվում են լենտիգո։ Ալբինիզմով հիվանդները ունակ չեն արևայրուք ընդունելու, սակայն շատ հեշտությամբ կարող են արևային այրվածքներ ստանալ։
Աչքերի գույն
Աչքերի գույնը տատանվում է շատ բաց կապույտից մինչև շագանակագույն, և այն կարող է տարիքի հետ մետկեղ փոփոխվել։ Սակայն ծիածանաթաղանթում պիգմենտի բացակայությունը թույլ չի տալիս նրանց ամբողջությամբ արգելափակել լույսի մուտքը աչք՝ այդ իսկ պատճառով ալբինիզմով հիվանդների աչքերը որոշակի լուսավորության պայմաններում կարող են ունենալ կարմիր գույն։
Տեսողություն
Ալբինզիմի ամենապրոբլեմատիկ առանձնահատկություններից մեկը տեսողության վրա իր թողած ազդեցությունն է։ Ըստ Mayo Clinic-ի տեսողության հետ կապված խնդիրներն են՝
- Նիստագմ՝ աչքերի արագ, ակամա աջ-ձախ կամ վերև-ներքև շարժումներ
- Գլխի թափահարում կամ թեքում ի պատասխան աչքերի ակամա շարժումների՝ ավելի լավ տեսնելու նպատակով
- Ստրաբիզմ, որի դեպքում աչքերը հավասարեցված չեն կամ չեն կարողանում շարժվել միասին
- Ծանր կարճատեսություն կամ հեռատեսություն
- Ֆոտոֆոբիա (զգայունություն լույսի նկատմամբ)
- Աստիգմատիզմ՝ լղոզված տեսողություն, որը առաջանում է աչքի առաջային մակերեսի աննորմալ կորությունների հետևանքով
- Ցանցաթաղանթի սխալ զարգացում, ոը բերում է տեսողության խանգարման
- Ցանցաթաղանթից դեպի ուղեղ գնացող նյարդային ազդակներ, որոնք չեն համապատասխանում նորմալ նյարդային ուղիներին
- Խորության վատ ընկալում
- Օրինական կուրություն (երբ տեսողությունը 20/200-ից քիչ է) կամ ամբողջական կուրություն
Կյանքը ալբինիզմի հետ
Գոյություն չունի ալբինիզմի որևէ բուժում, սակայն մաշկի գերզգայունությունը և տեսողության հետ կապված խնդիրները ամբողջ կյանքի ընթացքում պահանջում են ուշադրություն։
Թէ ինչ բուժման կարիք կունենա ալբինիզմով հիվանդը կապված իր աչքերի կամ տեսողության խնդիրների հետ, իհարկե, կախված է միայն այդ մարդու անհատական ախտանիշներից։ Որոշ մարդկանց դեպքում բավարար է միայն կոնտակտային լինզաներ կրելը, իսկ նրանք, ում տեսողությունը խիստ խանգարված է, գուցե աջակցող միջոցների կարիք ունեան, օրինակ՝ խոշոր տառատեսակով կամ բարձր կոնտրաստով կարդալու նյութեր, մեծ էկրանով համակարգիչներ և այդպես շարունակ։
Ալբինիզմով հիվանդների մաշկը կարող է հեշտությամբ այրվել, ինչը մեծացնում է մաշկի վնասման և անգամ մաշկի քաղցկեղի առաջացման ռիսկը։ Կենսական կարևորություն ունի այն, որ ալբինիզմով հիվանդ մարդիկ պետք է օգտագործեն լայն սպեկտրի արևապաշտպան քսուքներ և կրեն պաշտպանիչ հագուստ, երբ գտնվում են արևի տակ, որպեսզի կանխեն ուլտրամանուշակագույն ճառագայթների հետևանքով մաշկի վնասումը։ Նաև շատ կարևոր են պարբերաբար մաշկի ստուգումները՝ քաղցկեղը բացառելու համար։ Խիստ խորհուրդ է տրվում նաև կրել արևապաշտպան ակնոցներ։
Գուցե ալբինիզմով տառապող մարդու համար ամենաէական խնդիրը, որի հետ նա առնչվելու է իր կյանքի ընթացքում, այս հիվանդության մասին սխալ պատկերացումներն են։ Հատկապես երեխաները կարող են ստանալ տարբեր հարցեր, արժանանան հայացքների, և, ցավոք սրտի, անգամ ենթարկվեն ծաղրանքի և կողմնակալ վերաբերմունքի նրանց հասակակիցների կողմից։
Ծնողները կարող են աշխատել խորհրդատուի կամ հոգեբանի հետ, մինչ դեռ նրանց ալբինիզմով երեխան փոքր է, որպեսզի պարտաստվեն եկող մարտահրավերներին։
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