Esɔ be mí katã míase le mía ɖokui me be ɖeɖi tea mía ŋu eye míedɔa alɔ̃ ɣeaɖewoɣi. Gake, ɖe nèsena le ɖokuiwò me be yedɔ alɔ̃ eye ɖeɖi tea ŋuwò ale gbegbe ŋkeke bliboa, ne èdɔ alɔ̃ gaƒoƒo geɖe le zã me gɔ̃ hã? Ðe wòsesẽna na wò be nàfɔ le ŋdi mea? Ðe nèsena le ɖokuiwò me be yemele alɔ̃ dɔm nyuie o ne yeɖo ɣlidodo geɖe vɔ gɔ̃ hã? Ekema esia ate ŋu anye nu vevi aɖe na wò. Egbea, míele nu ƒom tso nɔnɔme sia si woyɔna be "idiopathic hypersomnia," alo abe alesi ɖɔktawo yɔnae ene ŋu.
Nukae Nye Idiopathic Hypersomnia?
Kpuie ko la, `(Idiopathic Hypersomnia)` nye alɔ̃dɔdɔ ƒe kuxi si me nèsena le ɖokuiwò me be ehiã be yeadɔ alɔ̃ fũu akpa. Nusi dzɔna enye be, ne èdɔ alɔ̃ agbɔsɔsɔme si nèhiã le zã me, si fia be gaƒoƒo enyi kple edzivɔ hã la, mèsena le ɖokuiwò me be yegbɔ ɖe eme alo gbɔdzɔe ne yefɔ le ŋdi me o. Nya "idiopathic" fia be womenya nusi tututu gbɔ nɔnɔme sia tso o .
Ne nɔnɔme sia le ŋuwò la, àte ŋu afɔ le ŋdi me ahanɔ dziɖeleameƒo kple dziɖeɖi me. Ðewohĩ ahiã be nàɖo ɣlidodo geɖe eye nàʋli vevie be yeafɔ tso aba dzi. Àte ŋu ase le ɖokuiwò me hã be ɖeɖi te ye ŋu ne èdɔ alɔ̃ gɔ̃ hã. Ðeɖiteameŋu ƒe seselelãme ŋkeke bliboa ate ŋu anye mɔxenu gã aɖe na wò gbesiagbedɔwo.
Gake mègatsi dzi o, àte ŋu adi kpekpeɖeŋu tso ɖɔkta gbɔ be nàkpɔ dzesi siawo gbɔ.
Aleke gbegbee nɔnɔme sia mebɔ o?
Le numekuku siwo wowɔ le United States nu la, dɔléle sia (Idiopathic Hypersomnia) dzea ame abe ewo ene le akpe alafa ɖesiaɖe me. Ema fia be enye nɔnɔme si mebɔ kura o.
Nukae nye esia ƒe dzesiwo?
Dzesi vevi siwo dzena le nɔnɔme si nye ``Idiopathic Hypersomnia`` ŋue nye:
- Ŋkeke me alɔ̃dɔdɔ fũu akpa: Àte ŋu adɔ alɔ̃ le ŋkekea ƒe ɣeyiɣi ɖesiaɖe me.
- Alɔ̃dɔdɔ wu gaƒoƒo 11 le gaƒoƒo 24 me: Esia lɔ alɔ̃dɔdɔ le ŋkeke me ɖe eme. Alo alɔ̃dɔdɔ wu gaƒoƒo 9 le zã me.
- Fɔfɔ sesẽ: Ne míedɔ alɔ̃ nyuie gɔ̃ hã la, esesẽna be woafɔ le ŋdi me. Èsena le ɖokuiwò me be gbɔgbɔ megale ye ŋu o eye taɖuame ne ènyɔ (`sleep inertia`).
Dzesi siawo ate ŋu ana wòasesẽ ŋutɔ be woawɔ gbesiagbedɔwo. Zi geɖe la, ɖɔkta aɖo kpe dɔléle sia dzi ne dzesi siawo le ame ŋu ŋkeke geɖe le kwasiɖa me, alo gbesiagbe kloe, hena ɣleti etɔ̃ ya teti. Ɣeaɖewoɣi la, dzesi siawo ate ŋu anɔ anyi ƒe geɖe, eye womate ŋu akpɔ dɔlélea ɖa godoo o.
Ne èle ŋudzɔ gɔ̃ hã la, tsɔ kpe ɖe ɖeɖiteameŋu ƒe seselelãme ŋu la, àte ŋu ase nanewo abe:
- Ahɔhɔ̃ ƒe afu: Esesẽna be woabu tame nyuie.
- Tɔtɔ: Ðeko wòle abe ɖe màte ŋu anya nusi le edzi yim o ene.
- Blanuiléle: Sese le ɖokuiwò me be yemele dzidzɔ kpɔm o, abe ɖe nusianu te ɖeɖi ye ŋu ene.
- Taɖuame.
- Taɖuame.
- Dzikudodo.
Nuka tae wòle alea ɖo?
Womenya nusi tututu gbɔ Idiopathic Hypersomnia tsona haɖe o . Numekukuwo le edzi yim, gake numekuku aɖewo ɖee fia be nu siwo gbɔna ate ŋu awɔ akpa aɖe:
- Domenyiŋusẽfianu ƒe tɔtrɔwo / domenyiŋusẽfianu ƒe tɔtrɔ: Tɔtrɔ siwo vaa domenyiŋusẽfianu aɖewo me ate ŋu ado kplamatse alesi wò ahɔhɔ̃menugbagbeviwo doa ka kple alesi wò alɔ̃dɔdɔ kple nyɔnyrɔ̃ ƒe tsatsam la dzi ɖuɖu.
- Dɔlélenutsiŋutete ƒe dɔwɔwɔ si mesɔ o: Wò ŋutɔ wò dɔlélenutsiŋutete ate ŋu adze lãmenugbagbevi siwo le lãmesẽ me le lãmekawo me dzi vodadatɔe, eye wòabu wo be wonye ŋɔdzinu.
Nukawoe hea nɔnɔme sia vɛ?
Nusiwo hea dɔlélea vɛ nye nusiwo ate ŋu ahe dzesiawo vɛ alo ana woagagblẽ ɖe edzi. Idiopathic Hypersomnia ate ŋu atso:
- Tɔtrɔ kpata siwo vaa wò alɔ̃dɔdɔ kple nyɔnyrɔ̃ ƒe tsatsam me.
- Kutrikuku fũu akpa.
- Atike si naa alɔ̃dɔdɔ amewo katã na nane abe amekoko ene.
- Dɔlékui ƒe dɔléle aɖe.
- Ta ƒe ʋuʋu.
Amekae le afɔku me wu le esia ta?
Ðewohĩ domenyiŋusẽfianu aɖe le ŋuwò be nàxɔ Idiopathic Hypersomnia. Esia fia be ne dɔléle sia alo alɔ̃dɔdɔ ƒe dɔléle bubu aɖe le wò ƒomea me la, mɔnukpɔkpɔ sue aɖe koe li be wò hã nàxɔe.
Kuxi kawoe esia ate ŋu ahe vɛ?
Ne ɖeɖi tea ŋuwò ɣesiaɣi la, esɔ be nàse le ɖokuiwò me be yemate ŋu awɔ yeƒe ŋutete katã o. Nu siawo tɔgbe ate ŋu anye kuxi na wò:
- Dɔwo wɔwɔ abe alesi wokpɔ mɔe le ŋkekea me ene (abe gbesiagbedɔwo, susu tsɔtsɔ ɖe nu ɖeka ŋu ene).
- Ƒomedodo me léle ɖe asi kple ame veviwo.
- Agbanɔamedziwo tsɔtsɔ le dɔwɔƒe, suku, kple ame ŋutɔ ƒe agbe me.
- Wò susu ƒe lãmesẽ kple seselelãme ƒe dadasɔ me léle ɖe asi.
Bu eŋu kpɔ, ʋukuku alo mɔ̃ sesẽwo zazã bia be nàlé ŋku ɖe eŋu bliboe. Ne èdɔ alɔ̃ le ɣeyiɣi sia tɔgbe me la, ate ŋu anye afɔku na wò kple ame bubuwo hã.
Aleke wokpɔa dɔléle sia dzea sii?
Ðɔkta aɖe ado wò kpɔ eye wòawɔ dodokpɔ siwo hiã be wòakpɔe ɖa be Idiopathic Hypersomnia le ŋuwò hã. Le dodokpɔa wɔɣi la, ɖɔktaa aɖo to wò dzesiwo nyuie eye ate ŋu abia tso asiwò be nàɖo nyabiase gbalẽvi aɖe si woyɔna be Epworth Sleepiness Scale, si dzidzea alesi nèsena le ɖokuiwò me be yedɔ alɔ̃e la ŋu.
Woate ŋu abia tso asiwò hã be nàwɔ alɔ̃dɔdɔ ŋuti nuŋlɔɖigbalẽ kwasiɖa ʋɛ aɖewo. Esia akpe ɖe ŋuwò nànya ɣeyiɣi siwo me nèmlɔa anyi hefɔna. Wò ɖɔkta ate ŋu ana mɔ̃ sue aɖe si woyɔna be actigraph hã wò be nàdo ɖe wò alɔnu. Esia akpe ɖe ŋuwò nàlé ŋku ɖe ale si nèdɔa alɔ̃e ŋu.
Tsɔ kpe ɖe eŋu la, alɔ̃dɔdɔ ŋuti numekuku tɔxɛwoLe kpɔɖeŋu me, woate ŋu awɔ polysomnography alo multiple sleep latency test (MSLT) ƒe dodokpɔ. Ðɔktaa alé ŋku ɖe dodokpɔ siawo me tsonu ŋu eye wòawɔ dodokpɔ bubuwo atsɔ aɖe nɔnɔme bubu siwo ate ŋu ahe dzesi mawo tɔgbe vɛ la ɖa.
Ðe atike blibo aɖe li na esia?
Fifia la, atike aɖeke meli na nɔnɔme si nye ``Idiopathic Hypersomnia.`` Ke hã, atikewɔmɔnu aɖewo li siwo ate ŋu akpe ɖe ame ŋu woaɖu dzesiawo dzi.
Aleke wowɔa nu ɖe esia ŋui?
Zi geɖe la, wozãa atikewo dzidzedzetɔe tsɔ ɖua ``Idiopathic Hypersomnia'' ƒe dzesiwo dzi.
Gakpe ɖe eŋu la, susumedɔdada tɔxɛ aɖe li si woyɔna be ``Cognitive Behavioral Therapy for Hypersomnia (CBT-H)``. Wotrɔ asi le esia ŋu be wòakpe ɖe nɔnɔme si nye ``Idiopathic Hypersomnia`` ŋu. Ne wozã atike sia kpe ɖe atike ŋu la, ate ŋu ana alɔ̃dɔdɔ ƒe nyonyome bliboa kple gbesiagbedɔwɔwɔ nanyo ɖe edzi.
Atike siwo wozãna na alɔ̃dɔdɔ fũu akpa si nye idiopathic hypersomnia
Atike ƒomevi vovovowo li siwo woate ŋu azã atsɔ ada dɔléle sia:
- Atike siwo doa ŋusẽ lãmekawo ƒe dɔwɔwɔ (`Central nervous system stimulants`) - le kpɔɖeŋu me, atike siwo nye `(amphetamines)` ƒomevi.
- Atike siwo doa ŋusẽ lãmekawo ƒe dɔwɔwɔ si menye amphetamine ƒuƒoƒoa me tɔ o - le kpɔɖeŋu me, `(modafinil)`.
- Central nervous system depressants - le kpɔɖeŋu me, sodium oxybate (esia nye atike si dzi FDA da asi ɖo).
- GABA xɔla ƒe mɔxenuwo - le kpɔɖeŋu me, flumazenil.
Atike siawo ƒe nugbegblẽ le ame ŋu to vovo. Ne èle atike bubuwo zãm fifia la, ele vevie be nàƒo nu kple wò ɖɔkta akpɔe ɖa be woate ŋu awɔ dɔ kple atike yeyea hã. Mègatrɔ wò atikewɔmɔnu wò ɖɔkta ƒe mɔɖeɖe manɔmee o.
Ðɔktaa ate ŋu abia tso asiwò be nàno Epworth Sleepiness Scale hafi adze atikewɔwɔ gɔme kple le atikewɔwɔ me be nàkpɔ alesi atikewɔwɔa wɔa dɔe.
Nukae nàte ŋu akpɔ mɔ na ne èle agbe kple nɔnɔme sia?
Ebɔ be nàse le ɖokuiwò me be dzi ɖe le ye ƒo ne èle Idiopathic Hypersomnia dɔlélea lém. Togbɔ be èdɔa alɔ̃ gaƒoƒo geɖe zã sia zã hã la, ɖeɖi tea ŋuwò kokoko le ŋkeke me. Esia ate ŋu ana wòasesẽ be míawɔ gbesiagbedɔwo, abe sukudede alo dɔwɔwɔ ɖe game dzi ene.
Ðewohĩ wò ɖɔkta aŋlɔ atike na wò be wòakpe ɖe ŋuwò nànɔ ŋudzɔ le ŋkekea me. Ðewohĩ axɔ ɣeyiɣi aɖe hafi nàdi atike kple agbɔsɔsɔme si sɔ na wò, eye ahiã be nàte atike vovovo geɖe kpɔ. Wò ɖɔkta alé ŋku ɖe ŋuwò edziedzi be yeakpɔ alesi atikewɔwɔa le dɔ wɔm na wòe.
Ɣekaɣie wòle be makpɔ ɖɔkta?
Ne èdɔ alɔ̃ nyuie le zã me gake ɖeɖi te ŋuwò akpa alo alɔ̃ dɔm le ŋkeke me la, ele vevie be nàyi ɖɔkta gbɔ . Le kpɔɖeŋu me, ne èkpɔ be yedɔ alɔ̃ le klass, dɔwɔƒe, alo esime nèle nu ƒom na xɔ̃wòwo la, mègaŋe aɖaba ƒu edzi o. Ðɔkta ate ŋu akpe ɖe ŋuwò nàkpɔ wò dzesiwo gbɔ le mɔ siwo akpe ɖe ŋuwò nànɔ ŋudzɔ nu.
Nya kawoe wòle be mabia ɖɔktaa?
Ne èyi wò ɖɔkta gbɔ la, àte ŋu abia nya siawo abe esiawo ene:
- Nukatae ɖeɖi tea ŋunye alea gbegbe le ŋkekea me?
- Ðe wòle be matrɔ nye alɔ̃dɔdɔ ƒe ɖoɖowɔɖia?
- Atikewɔwɔ ka ƒomevie nèkafu?
- Ðe atikewɔwɔ sia ƒe nugbegblẽ aɖewo lia?
- Ɣekaɣie wòle be mano atike si nèŋlɔ na?
Ne èdɔ alɔ̃ nyuie hã la, ate ŋu asesẽ be nàse vivi na agbe ne wò ŋutilã mekpɔ gbɔɖeme si wòhiã o. Idiopathic Hypersomnia ate ŋu ana nàto kpekpewo ŋu, nàtsi megbe, màgatsɔ susu aɖo nu ŋu o, eye ɣeaɖewoɣi gɔ̃ hã be nàse le ɖokuiwò me be yeafɔ tso aba dzi. Ðewohĩ àse le ɖokuiwò me gɔ̃ hã be yeaƒo asa na hadomenuwɔnawo le vɔvɔ̃ be yeadɔ alɔ̃ ne èle nu ƒom na ye xɔlɔ̃wo ta. Esiawo katã ate ŋu akpɔ ŋusẽ gã aɖe ɖe wò susu ƒe lãmesẽ dzi.
Dzɔgbenyuietɔe la, mehiã be nànɔ agbe kple dzesi siawo o. Ðɔkta ate ŋu akpe ɖe ŋuwò nànya nusita mèle gbɔɖeme si nèhiã la xɔm o eye wòana atike siwo ate ŋu akpe ɖe ŋuwò nànɔ ŋudzɔ.
Mlɔeba la, gbedasi si nàtsɔ ayi aƒemee:
Ne èse le ɖokuiwò me be alɔ̃ le ye wum le mɔ si mebɔ o nu eye ɖeɖi te ye ŋu le ŋkekea me katã la, mègabue be enye "kuviawɔwɔ" ko o. Ate ŋu anye atikewɔwɔ me nɔnɔme aɖe si gbɔ wòtso ƒe dzesi. Idiopathic Hypersomnia nye dɔléle mawo dometɔ ɖeka.
Ðo ŋku edzi be atike aɖewo li na esia. Nuƒoƒo na ɖɔkta tso wò dzesiwo ŋue nye afɔɖeɖe gbãtɔ. Ne wokpɔ dɔlélea nyuie eye wowɔ atike na wò nyuie la, wò agbenɔnɔ ate ŋu anyo ɖe edzi godoo (kakaɖedzitɔe). Menye wò ɖeka koe o, eye mègavɔ̃ be yeabia kpekpeɖeŋu o!
👩🏽 ⚕️ Nyabiase bubuwo (FAQs)
💬 Ʋu ƒe nyatakaka ka ƒomevie nye Karyotype Test?
Ʋudodokpɔ edziedzi mewɔa naneke wu be nàlé ŋku ɖe wò sukli kple ʋumemi ƒe agbɔsɔsɔ ŋu o. Esia nye ŋkuléle ɖe ame ƒe ‘DNA ƒe nɔnɔmetata’ ŋu bliboe! Dzɔdzɔmeŋusẽŋununya (domenyiŋusẽfianu) 46 ye le lãmenugbagbevi ɖesiaɖe me le míaƒe ŋutilã me. Dodokpɔ sia léa ŋku ɖe eŋu nenye be domenyiŋusẽfianu 46-awo katã me gblẽ, wogbã, wodzi ɖe edzi, alo woɖiɖi.
💬 Vidada ka ƒomevie wòle be woawɔ domenyiŋusẽfianu ƒe dodokpɔ sia godoo hafi woadzi vidzĩa, esime wògakpɔtɔ le vidzidɔa me?
Esia nye sedziwɔwɔ na vidada siwo xɔ wu ƒe 35 (fufɔfɔ ƒe nuwuwu) kple amesiwo ƒe ƒome ŋutinya me domenyiŋusẽfianu ƒe dɔlélewo le (to amniocentesis me). Elabena ne vidzĩ si le vidzidɔa me ƒe susu ƒe gbɔdzɔgbɔdzɔ abe Down syndrome ene la, nyatakaka sia ate ŋu ade dzesii 100% pɛpɛpɛ (to domenyiŋusẽfianu bubu ɖeɖefia me) hafi woadzi vidzĩa gɔ̃ hã.
💬 Nukatae wowɔa esia na amesiwo ɖe srɔ̃ eye womate ŋu adzi vi o (vidzidzi)?
Zi geɖe la, togbɔ be kuxi aɖeke medzena le tsinyenye alo azi ŋu o hã la, ɖeviwo metsina/funa zi geɖe o, elabena vodada ɣaɣla/gbagbã (ʋuʋudedi) le vidada alo fofoa ƒe domenyiŋusẽfianu ƒe nɔnɔmetata/domenyiŋusẽfianu me. Karyotype dodokpɔ sia koe ate ŋu ade dzesii nyuie.
` Alɔ̃dɔdɔ, alɔ̃dɔdɔ, alɔ̃dɔdɔ fũ, alɔ̃dɔdɔ si womeɖe o, idiopathic hypersomnia, alɔ̃madɔmadɔ, dzesiwo











💬 Comments (0)
Womeɖo nya aɖeke ɖe amewo haɖe o. Tsɔ wò nyaŋuɖoɖo kpe ɖe afisia zi gbãtɔ.
Tsɔ wò nyaŋuɖoɖo kpee