Ðe viwò suea dze nuƒoƒo alo azɔlizɔzɔ gɔme emegbe vie wu ɖevi bubuwoa? Ðe wòsesẽna nɛ be wòanɔ teƒe ɖekaa? Ðe wòʋuʋua eƒe abɔwo ɣeaɖewoɣi le mɔ wɔnukuwo nu, alo mete ŋu kpɔa wò ŋkume tẽ oa? Enye nusi sɔ be wò dzila navɔ̃ eye nàtsi dzimaɖi ne èkpɔ nu siawo tɔgbe. Egbea míele nu ƒom tso domenyiŋusẽfianu ƒe nɔnɔme aɖe si ate ŋu ahe dzesi siawo vɛ ŋu, gake womeƒoa nu tso eŋu boo le míaƒe hadomegbenɔnɔ me o. Woyɔa esia be Fragile X Syndrome. Mina míaƒo nu tso eŋu bɔbɔe, le mɔ si gɔme amesiame ate ŋu ase nu.
Nukae nye Fragile X Syndrome, ne míagblɔe kpuie ko?
Kpuie ko la, domenyiŋusẽfianu ƒe nɔnɔme aɖee nye esia . Eyae nye be menye nane si dzɔna to ame aɖe ƒe vodada alo ɖekematsɔleme me o. Enye nusi wotsɔ dzia ɖevi. Nɔnɔme sia ate ŋu agblẽ nu le ɖevi ƒe nusɔsrɔ̃, nuwɔna, dzedzeme, kple ɣeaɖewoɣi ƒe lãmesẽ gɔ̃ hã ŋu.
Nu vevitɔ kekeake si dzi wòle be míaɖo ŋkui le afisiae nye be zi geɖe la, ŋutsuviwo kpɔa ŋusẽ ɖe nɔnɔme sia dzi vevie wu nyɔnuviwo. Míadzro susu si tae wòle alea ɖo me emegbe. Ðevi siwo ŋu nɔnɔme sia le ate ŋu akpɔ nusɔsrɔ̃ ƒe kuxiwo kple susu ƒe tsitsi ƒe kuxiwo. Gake míate ŋu akpe ɖe ɖevi siawo ŋu woatu woƒe ŋutetewo katã ɖo to atikewɔwɔ nyuie, hehenana tɔxɛ, kple atikewɔwɔ me .
Dzesi kawoe ɖevi ɖena fiana le nɔnɔme sia me?
Ðevi si ŋu Fragile X le ate ŋu aɖe dzesi vovovowo afia. Ðevi aɖewo ate ŋu aɖe dzesi siawo afia fafɛ ŋutɔ, evɔ ate ŋu agblẽ nu le bubuwo ŋu vevie. Mina míalé ŋku ɖe kplɔ̃ sia ŋu be wòakpe ɖe mía ŋu míase dzesi siawo gɔme nyuie wu.
| Nɔnɔme ƒe ƒomevi | Nusiwo woakpɔ |
|---|---|
| Kuxi siwo ku ɖe tsitsi kple nusɔsrɔ̃ ŋu |
|
| Nuwɔna kple seselelãme ƒe kuxiwo | |
| Ŋutilã ƒe dzedzeme ƒe nɔnɔmewo |
Nu vevitɔe nye be menye ɖevi ɖesiaɖee nɔnɔme siawo katã anɔ o. Eye esi nɔnɔme siawo dometɔ ɖeka alo eve le ɖevi ŋu ta la, mefia be Fragile X le eŋu o . Ele be nàkpɔ ɖɔkta godoo be woakpɔ dɔlélea nyuie.
Kadodo kae le Fragile X, Autism kple ADHD dome?
Esia hã nye nya vevi aɖe ŋutɔ. Ðevi gbogbo aɖewo siwo ŋu Fragile X le hã ate ŋu axɔ nɔnɔmewo abe autism alo ADHD (Attention Deficit Hyperactivity Disorder) ene.
- Ðevi siwo ŋu Fragile X le dometɔ siwo ade 40% hã ate ŋu anye autism .
- Eye ADHD alo ADD (attention deficit hyperactivity disorder) ate ŋu anɔ wo dometɔ siwo ade 80% ŋu.
Ne Fragile X kple autism siaa le ɖevi ŋu la, anɔ eme be alɔ̃madɔmadɔ, alɔ̃dɔdɔ ƒe kuxiwo, kple nuwɔna me kuxiwo anɔ eŋu.
Aleke dɔléle sia dzɔnae? Domenyinu mee wònyea?
Ẽ, domenyiŋusẽfianu ƒe tɔtrɔ si ƒe dome míenyi tso dzidzime yi dzidzime gbɔe esia tsona. Mina míase esia gɔme bɔbɔe vie.
Domenyiŋusẽfianu aɖe si woyɔna be `FMR1` le X domenyiŋusẽfianu dzi le míaƒe ŋutilã me. Dɔ vevitɔ si domenyiŋusẽfianu sia wɔnae nye be wòawɔ protein tɔxɛ aɖe (FMR protein) si kpena ɖe lãmeka siwo le míaƒe ahɔhɔ̃ me ŋu be woaɖo dze kple wo nɔewo nyuie. Protein sia le vevie na ahɔhɔ̃a ƒe tsitsi le lãmesẽ me.
Le ɖevi si ŋu Fragile X le gome la, tɔtrɔ le `FMR1` domenyiŋusẽfianu me nana protein vevi sia mewɔa nu boo aɖeke o alo mewɔa naneke kura o. Esia gblẽa ahɔhɔ̃a ƒe tsitsi kple dɔwɔwɔ me.
Nukatae wògblẽa nu le ŋutsuviwo ŋu wu?
Bu eŋu kpɔ, X domenyiŋusẽfianu (XX) eve le ɖevi nyɔnu aɖe si. Eyata ne gbɔdzɔgbɔdzɔ aɖe le `FMR1` domenyiŋusẽfianu me le X domenyiŋusẽfianu ɖeka dzi hã la, zi geɖe la, X domenyiŋusẽfianu bubu si le lãmesẽ me la xea fe ɖe nusi gblẽ la ta. Eyata ɖevi nyɔnuwo meɖea dzesi ʋɛ aɖewo fiana o alo womeɖea dzesi boo aɖeke fiana o.
Gake X domenyiŋusẽfianu ɖeka kple Y domenyiŋusẽfianu ɖeka (XY) le ɖevi ŋutsu si. Eyata ne gbɔdzɔgbɔdzɔ aɖe le `FMR1` domenyiŋusẽfianu me le X domenyiŋusẽfianu ɖeka ma dzi la, X domenyiŋusẽfianu bubu aɖeke meli si axe fe ɖe eta o. Esia tae dɔlélea ƒe dzesiwo nu sẽna ɖe ɖevi ŋutsuwo dzi wu.
Ne domenyiŋusẽfianu sia si gblẽ le vidada ŋu la, mɔnukpɔkpɔ 50% le viawo dometɔ ɖeka (ŋutsu alo nyɔnu) si be wòanyie ƒe dome. Ne domenyiŋusẽfianu sia le vifofo aɖe si la, ɖeko wòate ŋu atsɔe ana via nyɔnuwo.
Aleke woawɔ ade dzesi nɔnɔme sia?
Ðeko woate ŋu akpɔ nɔnɔme sia kple kakaɖedzi to domenyiŋusẽfianu dodokpɔ me. Esia bia be woawɔ ʋudodokpɔ bɔbɔe aɖe. Wozãa ʋu sia tsɔ léa ŋku ɖe tɔtrɔ aɖe si le `FMR1` domenyiŋusẽfianu me ŋu.
Le fufɔɣi gɔ̃ hã la, woate ŋu awɔ dodokpɔwo akpɔe ɖa be dɔléle sia le vidzĩa ŋu hã.
- Amniocentesis: Vidadaa ƒe vidzidɔ me tsi sue aɖe ɖeɖe tso vidadaa ƒe vidzidɔ me hedoe kpɔ.
- Chorionic Villus Sampling (CVS): Woɖea lãmenugbagbeviwo ƒe kpɔɖeŋu sue aɖe tso vidzidɔa me hedoa wo kpɔna.
Hafi nàtso nya me le dodokpɔ siawo ŋu la, ele vevie ŋutɔ be nàdzro viɖe kple kuxi siwo le wo ŋu me kple wò ɖɔkta .
Nukae míate ŋu awɔ atsɔ akpe ɖe ɖevia ŋu?
Esi wònye domenyiŋusẽfianu ƒe nɔnɔmee nye esia ta la, "akunyawɔwɔ ƒe tu" aɖeke meli si ate ŋu adae keŋkeŋ o. Gake nu geɖe li míate ŋu awɔ atsɔ akpɔ ɖevi ƒe dzesiwo gbɔ, akpe ɖe eŋu wòasrɔ̃ nu, eye míaʋu mɔ na agbe si me dzidzedzekpɔkpɔ le. Nu vevitɔ kekeake le afisia enye be woade nu nyaa me kaba ale si nàte ŋui (nudede eme kaba).
| Mɔnu siwo akpe ɖe ame ŋu | Nuɖᴐɖᴐ |
|---|---|
| Atikewɔwɔ ƒe mɔnuwo |
|
| Hehenana tɔxɛ | Dɔwɔwɔ kple sukua be woawɔ hehenana ƒe ɖoɖo tɔxɛ aɖe si sɔ kple ɖevia ƒe nusɔsrɔ̃ ŋutete. |
| Atikewo | |
| Nɔnɔme si me wodoa alɔ ame le |
Aleke ɖevi siawo ƒe etsɔme anɔ?
Esiae nye kuxi gãtɔ kekeake na dzilawo. Fragile X menye nɔnɔme si ate ŋu ade ame ƒe agbe afɔku me o. Ame si ŋu dɔléle sia le ƒe agbenɔƒe sɔ kple ame si le lãmesẽ me ƒe agbenɔƒe si sɔ.
Ne wona kpekpeɖeŋu kple hehe nyuitɔ la, ame geɖe siwo ŋu nɔnɔme sia le ate ŋu anɔ agbe si me dzidzedzekpɔkpɔ le, si me dzidzɔ le. Ðewohĩ ahiã be woakpe ɖe wo dometɔ aɖewo ŋu vaseɖe esime woatsi. Gake wo dometɔ akpa gãtɔ te ŋu dea suku, xlẽa agbalẽwo, srɔ̃a nu yeyewo, wɔa dɔ, eye wowɔa nuwo le wo ɖokui si. Nu vevitɔ kekeakee nye be nàde dzesi ɖevia ƒe ŋutetewo ahakpe asi ɖe wo ŋu wòasɔ ɖe enu.
Gbedasi si Wotsɔ Yi Aƒeme
- Fragile X Syndrome menye ame aɖe ƒe vodada o, ke boŋ domenyiŋusẽfianu ƒe nɔnɔme aɖe si ƒe dome wonyi tso edziɣi ke.
- Dzesiawo ate ŋu adze ŋutsuviwo dzi vevie wu nyɔnuviwo.
- Ne ède dzesii be viwò ƒe tsitsi tsi megbe, nuƒoƒo ƒe kuxiwo, nusɔsrɔ̃ ƒe kuxiwo, alo nuwɔna ƒe kuxiwo le viwòa ŋu la, ƒo nu tso eŋu na ɖɔkta.
- Togbɔ be womate ŋu ada dɔléle sia keŋkeŋ o hã la, woate ŋu akpɔ dzesiawo gbɔ nyuie ŋutɔ to atikewɔmɔnuwo kple atikewo zazã me.
- Dɔlélea didi kaba ale si woate ŋui kple kpekpeɖeŋu si hiã nana ɖevia akpe ɖe eŋu ŋutɔ be woakpɔ dzidzedze le etsɔme.
- Ne ɖikeke aɖe le mewò le viwòa ŋu la, nu nyuitɔ si nàwɔe nye be nàbia wò ɖeviwo ƒe dɔdala alo ƒomea ƒe ɖɔkta hena aɖaŋuɖoɖo.
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