Ède dzesi ame aɖewo siwo ƒe ŋutigbalẽ kple ɖa le ɣie ŋutɔ alo le ɣie gɔ̃ hã, eye ɣeaɖewoɣi woƒe ŋkuwo le blɔ alo blɔ ɣie kpɔa? Zi geɖe la, hadomegbenɔnɔ tsɔa ŋkɔ vovovowo dea wo dzi, gake le atikewɔwɔ gome la, woyɔa dɔléle sia be Albinism . Ame geɖe xɔe se vodadatɔe be dɔlélee wònye, gake le nyateƒe me la, menye dɔlélee wònye o, eye mexɔa ame hã o. Ðe míasrɔ̃ nu geɖe tso nusi esia fia ŋutɔŋutɔ ŋua?
Nuka tututue nye Albinism?
Kpuie ko la, Albinism nye domenyiŋusẽfianu ƒe nɔnɔme si tsoa amadede aɖe si woyɔna be melanin ( melanin ) ƒe wɔwɔme dzi ɖeɖe kpɔtɔ alo eƒe anyimanɔmanɔ kura gbɔ.
Bu melanin be enye wò ŋutilã ƒe dzɔdzɔme “ink.” Amadede sia naa amadede wò ŋutigbalẽ, taɖa, kple ŋkuwo . Ame ɖekaɖeka siwo me melanin sɔ gbɔ ɖo ƒe dzedzeme do viviti wu, gake esiwo me melanin mesɔ gbɔ ɖo o ya ƒe gbeɖiɖiwo me mekɔna o. Le amesiwo ŋu Albinism le gome la, melanin ƒe wɔwɔme dzi ɖena kpɔtɔna ŋutɔ, si tae woƒe ŋutigbalẽ kple taɖa dzena abe ɖe wòle ɣie ene ɖo.
Le amadede nana megbe la, melanin wɔa akpa vevi aɖe le ŋku ƒe lãkusi siwo le wò ŋkuwo me ƒe tsitsi nyuie me. Le esia ta la, ame geɖe siwo ŋu Albinism le la kpɔa ŋku ƒe kuxi aɖewo.
Vevietɔ wu la, ɖo ŋku edzi be menye dɔlélee Albinism nye o; enye domenyiŋusẽfianu ƒe nɔnɔme si nɔa anyi tso esime wodzii eye womate ŋu axɔe na ame bubuwo o.
Ðe wòsɔ be woayɔ ame aɖe be ‘albino’?
Ðewohĩ èse amesiwo ŋu dɔléle sia le be “albino” kpɔ. Gake esi míenye atikewɔlawo ta la, mía kple ame geɖe siwo ŋu dɔléle sia le la míelɔ̃a nyagbɔgblɔ “ame si ŋu albinism le.” Esia le alea elabena menye bubudede ame ŋu gbeɖe be woatsɔ eƒe atikewɔwɔ ƒe nɔnɔme ɖeɖeko aɖe ame gɔme o. Abe alesi míeyɔa ame si ŋu suklidɔ le be “ame si ŋu suklidɔ le” tsɔ wu be míayɔe be ŋkɔnyae ene la, mɔnu sia ɖenɛ fiana be míedea bubu amea ŋu.
Ðe Albin-dɔléle ƒomevi vovovowo lia?
Ẽ, Albin-dɔléle ƒomevi vevi evee li. Tsɔ kpe ɖe eŋu la, Albinism ƒe nɔnɔme aɖewo ate ŋu adze abe domenyiŋusẽfianu ƒe dɔléle siwo mebɔ o ƒe akpa aɖe ene. Mina míalé ŋku ɖe esiawo ŋu ɖe vovo.
| Albinism Ƒomevi | Nuɖᴐɖᴐ |
|---|---|
| Ŋku ƒe Albinism (OCA) . | Esiae nye ƒomevi si bɔ wu. “Oculo” fia ŋkuwo, eye “Cutaneous” fia ŋutigbalẽ. Abe alesi ŋkɔa ɖee fia ene la, egblẽa nu le ŋutigbalẽ, taɖa, kple ŋkuwo ŋu . OCA ƒe ƒomevi sue adre lɔƒoe li, eye le ƒomevi suea nu la, taɖa kple ŋutigbalẽ ƒe amadede ate ŋu atso ɣie va ɖo aŋutiɖiɖi si me kɔ. |
| Ŋku ƒe Albinism (OA) . | Esia mebɔ kura wu OCA o. Ŋkuwo koe wògblẽa nu le koŋ . Mekpɔa ŋusẽ boo aɖeke ɖe ŋutigbalẽ kple ɖa ƒe amadede dzi o, si ate ŋu adze abe ƒomea me tɔwo tɔ ene alo aɖi vie ko. |
Albinism si do ƒome kple nɔnɔme bubuwo
Le go siwo mebɔ kura o me la, Albinism ate ŋu anye domenyiŋusẽfianu ƒe dɔléle siwo sesẽ wu ƒe nɔnɔme ɖeka, si fia be ate ŋu agblẽ nu le ŋutilã ƒe ɖoɖo bubuwo hã ŋu:
- Hermansky-Pudlak ƒe dɔléle (HPS): Tsɔ kpe ɖe albinism ŋu la, esia ate ŋu alɔ ʋu ƒe sisi ƒe nyawo, alo lãkusi, ayiku, alo dɔgbo ƒe dɔlélewo ɖe eme .
- Chediak-Higashi ƒe dɔléle (CHS): Nɔnɔme sia lɔ albinism ɖe eme kpe ɖe dɔlélenutsiŋutete si gbɔdzɔ ŋu , si wɔnɛ be dɔlékuiwo gbugbɔgaxɔ ƒe afɔku geɖe wu .
Nukawoe nye dzesi vevitɔwo?
Albinism gblẽa nu le wò ŋutigbalẽ, ɖa, kple ŋku ƒe dzedzeme, kpakple wò nukpɔkpɔ ŋu koŋ.
Ŋutigbalẽ
Zi geɖe la, amesi ŋu Albinism le ƒe ŋutigbalẽ nɔa ɣie ŋutɔ, togbɔ be esia nɔ te ɖe melanin ƒomevi tɔxɛ kple agbɔsɔsɔ si wowɔ dzi hã.
- OCA Ƒomevi 1: Ŋutilã ƒe amadede nyea ɣie ŋutɔ, eye zi geɖe la, eƒe ŋutigbalẽ nɔa ɣie.
- OCA Ƒomevi 2 kple 4: Ŋutilã ate ŋu adze abe ɖe wòle ɣie ene.
- OCA Ƒomevi 3: Ŋutilã ate ŋu axɔ amadede dzĩ-blɔ.
Nya Vevitɔ: Melanin wɔa dɔ abe wò ŋutilã ƒe dzɔdzɔme ɣe ƒe keklẽŋusẽtike ( ɣe ƒe keklẽŋusẽtike ) ene, si kpɔa tawò tso UV keklẽ siwo gblẽa nu le ame ŋu me. Esi wònye be melanin ƒe agbɔsɔsɔ medea ame dzi o ta la, ame ɖekaɖeka siwo ŋu Albinism le la dzona bɔbɔe ŋutɔ. Eyata ŋutigbalẽ me kansa ƒe afɔkua lolo ŋutɔ wu le mama dedie nu.
Ɖa
Taɖa ƒe amadede toa vovo le Albinism ƒomevi si le ame ŋu nu. Ame aɖewo ƒe ɖa ate ŋu anye ɣie keŋkeŋ, gake bubuwo ya ƒe amadede ate ŋu anye ɣie, blɔ, aŋutiɖiɖi, alo dzĩ, eye esiawo katã nɔ te ɖe melanin agbɔsɔsɔme si wowɔ dzi.
Ŋkuwo
Ŋku ƒe amadede ate ŋu atso blɔ si me kɔ va ɖo aŋutiɖiɖi. Gake menye amadedea ɖeɖeko dzie Albin-subɔsubɔ kpɔa ŋusẽ ɖo o; ekpɔa ŋusẽ ɖe nukpɔkpɔ dzi tẽ:
- Nukpɔkpɔ si me mekɔ o: Esesẽna be woakpɔ nuwo nyuie.
- Refractive Errors ( Refractive Errors ): Nɔnɔmewo abe nukpɔkpɔ kpui alo nukpɔkpɔ didi ene si hiã be woatsɔ ŋkumeɖonu aɖɔe ɖo.
- Strabismus (ŋku siwo wotso): Esesẽna be woatsɔ ŋku eveawo asɔ ɖe ɖoɖo nu le ɣeyiɣi ɖeka me.
- Nystagmus: Ŋkuwo ƒe ʋuʋu kabakaba le lɔlɔ̃nu faa me.
- Fotovɔvɔ̃: Ɣe ƒe keklẽ alo akaɖi siwo klẽna ƒe seselelãme si gbɔ eme.
- Goglome ƒe nukpɔsusu dzi ɖeɖe kpɔtɔ: Esesẽna be woadzidze didime si le nuwo dome pɛpɛpɛ.
Nukatae esia dzɔna ɖo? Ðe wònye domenyinua?
Ẽ, Albinism nye domenyiŋusẽfianu dzro aɖe ko , si fia be wonyie tso dzilawo gbɔ na wo viwo.
Domenyiŋusẽfianu geɖe le míaƒe ŋutilã me siwo kpɔa melanin wɔwɔ dzi. Domenyiŋusẽfianu tɔxɛ siawo ƒe tɔtrɔ alo tɔtrɔwoe doa kplamatse melanin ƒe wɔwɔme si sɔ.
- Wonyia ŋkume ƒe dɔléle (OCA) ƒe dome to ‘autosomal recessive’ ƒe ɖoɖo aɖe dzi. Kpuie ko la, hafi dɔléle sia nadze ɖevi dzi la, ele be woanyi domenyiŋusẽfianu si sɔ la ƒe dome tso dzila eveawo siaa gbɔ . Ne ɖevi nyi domenyiŋusẽfianu la ƒe dome tso dzila ɖeka ko gbɔ la, womaɖe dzesi aɖeke afia o; ke hã, wozua "ametsɔla." Le etsɔme la, ne wodzi vi si ŋu dɔlékui bubu le la, mɔnukpɔkpɔ 25% li be wo vi naxɔ albinism.
- Zi geɖe la, wonyia ŋku ƒe dɔléle (OA) ƒe dome le ‘X-kadodo’ me.ɖoɖome. Esi wònye be esia ku ɖe X domenyiŋusẽfianu ŋu ta la, ŋutsuwo koŋue dɔlélea gblẽa nu le.
Aleke wowɔna dea dzesii hekpɔa egbɔ?
Dɔlélea didi
Zi geɖe la, wò ɖɔkta dea dzesi nɔnɔme sia to:
- Ŋutilãmedodokpɔ: Zi geɖe la, ŋutigbalẽ, taɖa, kple ŋku ƒe amadede si me kɔ la dzena le edziɣi alo le ema megbe kpuie.
- Ŋku Dodokpɔ Bliboe: Ŋku ƒe nɔnɔme tɔxɛwo (abe nystagmus alo strabismus ene) me dzodzro.
- DNA Dodokpɔ: Le go aɖewo me la, woate ŋu awɔ domenyiŋusẽfianu dodokpɔ atsɔ aɖo kpe albinism ƒomevi aɖe koŋ dzi.
Atikewɔwɔ Kple Edzikpɔkpɔ
Esi wònye domenyiŋusẽfianu ƒe nɔnɔme sia nye ta la, atike aɖeke meli fifia si ana melanin ƒe wɔwɔme nadzi ɖe edzi le ŋutilãa me o. Gake àte ŋu anɔ agbe si me lãmesẽ le, si sɔ ne èkpɔ kuxi siwo do ƒome kplii gbɔ nyuie .
Nu vevi eve aɖewo li siwo dzi woalé ŋku ɖo.
1. Ŋutilãdzikpɔkpɔ (Vevietɔ!) .
- Ɣe ƒe Takpɔkpɔ: Ƒo asa na ɣe ƒe keklẽ sesẽ si le tẽ alesi nàte ŋui, vevietɔ le ŋdi ga 11:00 kple ŋdɔ ga 3:00 dome.
- Ɣe ƒe keklẽŋusẽtike: Gbesiagbe ɣesiaɣi si nèdo go yi gota la, tsɔ ɣe ƒe keklẽŋusẽtike si ƒe dɔwɔwɔ keke ta si ƒe SPF nye 30 alo esi wu nenema si kpɔa ame ta tso UVA kple UVB keklẽ siaa si me. Kpɔ wò ɖɔkta gbɔ hena aɖaŋuɖoɖo siwo sɔ na wò.
- Ametakpɔnu: Na wòazu numame na wò be nàdo awu siwo ƒe abɔwo didi, kposɔwo, kple ɣe ƒe ŋkumewu siwo kpɔa ame ta tso UV.
- Ŋutilãme Dzadzraɖo Edziedzi: Lé ŋku ɖe wò ŋutigbalẽ ŋu enuenu be teƒe yeyewo, ʋuʋudedi, alo tɔtrɔ le esiwo li xoxo ƒe amadede, lolome, alo nɔnɔme ŋu hã. Ne ède dzesi tɔtrɔ aɖewo la, yi ɖɔkta gbɔ enumake.
2. Ŋkudzikpɔkpɔ
- Ŋkudodokpɔ Edziedzi: Ele vevie be amesiame si ŋu albinism le nayi ŋkudɔdala gbɔ edziedzi.
- Lãmesẽfefewɔnuwo Ðɔɖɔɖo: Do ŋkumeɖonu alo ŋkumeɖonu siwo sɔ be nàɖɔ vodada siwo le ŋkume ƒe keklẽ ŋu ɖo.
- Nukpɔkpɔ ƒe Kpekpeɖeŋunanuwo: Zã dɔwɔnuwo abe ŋkumeɖonu siwo lolona ene be wòakpe ɖe ŋuwò nàkpɔ nu nyuie.
- Amekoko: Le go aɖewo me la, woate ŋu awɔ dɔ na ame be wòaɖɔ ŋku ƒe ɖoɖo (strabismus) ɖo.
Ne albinism le viwò ŋu...
Enye nusi sɔ be dzilawo natsi dzi alo atsi dzimaɖi ne wose be albinism le yewo vi ŋu. Ke hã, ne èdo alɔ viwòa eye wònya nu nyuie la, àte ŋu ana agbe nyui aɖe nanɔ viwòa.
- Na Sukua Nanya: Dzro viwòa ƒe nɔnɔmea me kple woƒe nufialawo, vevietɔ ku ɖe nukpɔkpɔ ƒe kuxiwo ŋu. Bia dzeƒe abe ŋgɔgbezikpuiwo alo agbalẽ siwo dzi woŋlɔ nu gãwo ɖo ene.
- Tu Kakaɖedzi Ðo Ðe Ðokuiwò Ŋu: Esi viwòa ƒe dzedzeme ate ŋu ato vovo ta la, ate ŋu ado go fewuɖuɖu alo anyrawɔwɔ le eŋu. Ðo dze kpli wo gaglãa tso woƒe ɖevime ke eye nàwɔ nɔnɔme si me woanɔ dedie le si me woaɖe dzi ɖi le be yewoagblɔ yewoƒe seselelãmewo na wò.
- Na Ɣe ƒe Dɔlékuiwutike Zazã Nasɔ: Na ɣe ƒe keklẽŋusẽtikewo zazã nanye ƒomea ƒe numame ale be viwò nagase le eɖokui me be yeɖe ye ɖe vovo o.
- Dzesidede Edziedzi: Kpɔ egbɔ be viwòa wɔ ɖe ŋutigbalẽ kple ŋku ƒe kpekpe siwo katã ŋu wòwɔ ɖoɖo ɖo dzi.
Agbenɔnɔ kple albinism ate ŋu ahe kuxiwo vɛ, gake ɖo ŋku edzi be: mexea mɔ na ame ƒe nunya, ŋutete, alo ŋutete be wòakpɔ dzidzedze o. Ne viwòa kpɔa edzi nyuie eye nɔnɔme si me wodoa alɔ viwòa le la, ate ŋu anɔ agbe si me dzidzeme le, si me dzidzeme le abe ame bubu ɖesiaɖe ene.
Gbedasi si Wotsɔ Yi Aƒeme
- Albinism menye dɔléle alo dɔléle si xɔa ame me o; enye domenyiŋusẽfianu si tso domenyiŋusẽfianu gbɔ.
- Melanin ƒe wɔwɔme dzi ɖeɖe kpɔtɔ gbɔe wòtsona.
- Ekpɔa ŋusẽ ɖe ŋutigbalẽ, taɖa, kple ŋku ƒe amadede dzi, eye ate ŋu akpɔ ŋusẽ ɖe nukpɔkpɔ hã dzi.
- Wò ŋutigbalẽ takpɔkpɔ tso ŋdɔkutsu me le vevie ŋutɔ. Ɣe ƒe keklẽŋusẽtike kple ametakpɔnu zazã nyuie ate ŋu aɖe ŋutigbalẽ me kansa ƒe afɔkua dzi akpɔtɔ ŋutɔ.
- Ele be woado ŋku kpɔ edziedzi.
- Ne wokpɔ amesiwo ŋu albinism le nyuie eye wodo alɔ wo nyuie la, woate ŋu anɔ agbe si me dzidzeme le, le lãmesẽ me, eye wòaɖe vi.
Albinism, Melanin, Ŋutilã ƒe nɔnɔmewo, Nukpɔkpɔ, Domenyiŋusẽfianu ƒe dɔlélewo, Ɣe ƒe keklẽŋusẽtike, Ŋutilã me kansa
