Ðe ahɔhɔ̃ ƒe tsitsi ƒe kuxi aɖe le viwòa ŋua? Srɔ̃ nu tso Holoprosencephaly (HPE) ŋu .

Nyawo mate ŋu aɖe dzidzɔ kple lɔlɔ̃ si míekpɔna ne míelé ŋku ɖe vidzĩ si wodzi yeyee ŋu o, alo? Gake ɣeaɖewoɣi la, mía vidzĩwo ate ŋu ava xexe sia me kple lãmesẽkuxi siwo míele mɔ kpɔm na o. Egbea, míele nu ƒom tso vidzidzi ƒe gbɔdzɔgbɔdzɔ aɖe si sesẽ vie, gake wòle be míanyae ŋu.

Nukae nye Holoprosencephaly (HPE)?

Kpuie ko la, Holoprosencephaly, si wogayɔna be HPE, nye dɔléle si wodzina si dzɔna ne vidzĩ gakpɔtɔ le vidzidɔ me. Esia nye vidzidzi ƒe gbɔdzɔgbɔdzɔ. Le nɔnɔme sia me la, fugboe ƒe ahɔhɔ̃ mema ɖe ɖusime kple miame ƒe akpa vovovoawo me nyuie ne ele tsitsim o. Ènya be le dzɔdzɔme nu la, míaƒe ahɔhɔ̃ ma ɖe akpa vevi eve me, ɖusime kple miame. Dzogoe eve siawo do ƒome kple wo nɔewo eye woɖɔlia nyatakakawo to lãmekawo ƒe ka siwo woyɔna be corpus callosum dzi. Azɔ hã, woma akpa siawo dometɔ ɖesiaɖe ɖe akpa bubuwo abe ŋgɔgbekpa, megbeƒu, megbeƒu, kple megbeƒu ene.

Ahɔhɔ̃a ƒe mama ɖe akpa vovovowo me alea le vevie ŋutɔ. Elabena mama sia kpena ɖe ahɔhɔ̃a ŋu wòwɔa nyatakaka gbogbo aɖewo ŋudɔ le ɣeyiɣi ɖeka me eye wòwɔa dɔ vovovowo. Eyata abe alesi wòle le `(HPE)` gome ene la, ne mama sia medzɔ esime ahɔhɔ̃a le tsitsim nyuie o la, ate ŋu ahe kuxi geɖe siwo do ƒome kple ŋutilã kple lãmekawo ƒe dɔwɔwɔ vɛ.

Nɔnɔme sia, si woyɔna be ‘HPE’, dzɔna le fugboe ƒe tsitsi ƒe gɔmedzedze ŋutɔ. Esia fia be ate ŋu adzɔ hafi nànya be yefɔ fu gɔ̃ hã. Holoprosencephaly ƒomevi vovovowo li, eye woƒe sesẽme kple dzesiwo to vovo. Alesi nɔnɔmea kpɔa ŋusẽ ɖe ɖevi ɖesiaɖe dzii hã ate ŋu ato vovo.

Nukawoe nye holoprosencephaly (HPE) ƒomevi veviwo?

Holoprosencephaly (HPE) ƒomevi vevi etɔ̃e li. Mina míalé ŋku ɖe wo ŋu le ɖoɖo si nu wo dometɔ akpa gãtɔ le va ɖo esiwo nu mesẽ boo o nu:

Alobar holoprosencephaly ƒe dɔléle

Esiae nye ƒomevi si nu sẽ wu . Nusi dzɔna le afisia enye be fugboe ƒe ahɔhɔ̃ mema ɖe akpa eve me kura o. Esia wɔnɛ be xɔtunu siwo le ahɔhɔ̃a kple mo dome la buna, eye ahɔhɔ̃a ƒe dowo va ƒoa ƒu. Wokpɔa mo ƒe nɔnɔme madeamedzi sesẽwo tsɔ kpe ɖe esia ŋu. Zi geɖe la, wodzia vidzĩ siwo ŋu `(HPE)` ƒomevi sia le la kuku alo kuna le wo dzidzi megbe kpuie.

Semilobar holoprosencephaly ƒe dɔléle

Le ƒomevi sia me la, fugboea ƒe ahɔhɔ̃ ƒe akpa aɖe koe ma ɖe akpa eve me . Esia dzɔna elabena ahɔhɔ̃a ƒe miame do ƒome kple ɖusime le teƒe siwo woyɔna be ``frontal lobes`` kple ``parietal lobes``. Azɔ hã, fli si ma ahɔhɔ̃a ƒe ɖusime kple miame dome, ``interhemispheric fissure,`` le ahɔhɔ̃a ƒe megbe ko.

Lobar holoprosencephaly ƒe dɔléle

Le ƒomevi sia me la, fugboe ƒe ahɔhɔ̃ ƒe akpa gãtɔ ma ɖe akpa eve me., gake womeɖe wo nɔewo ɖa keŋkeŋ o. Togbɔ be ɣletivimefakaka eve li (ɖusime kple miame) hã la, ahɔhɔ̃mekawo do ƒome ɖekae le ``ŋgɔgbe lãkusi`` me. Esia nye ``(HPE)`` ƒe ƒomevi si mesẽ boo o .

Titina Interhemispheric (MIH) ƒe tɔtrɔ

Tsɔ kpe ɖe ƒomevi vevi etɔ̃ siawo ŋu la, ƒomevi sue enelia li si woyɔna be Middle Interhemispheric (MIH) ƒe tɔtrɔ. Afi siae fugboea ƒe ahɔhɔ̃ do ƒome kple wo nɔewo le le titina.

Vovototo kae le hydranencephaly kple holoprosencephaly dome?

Ðewohĩ ŋkɔ eve siawo atɔtɔ wò. Hydranencephaly kple holoprosencephaly siaa nye vidzidzi ƒe gbɔdzɔgbɔdzɔ siwo gblẽa nu le vidzĩa ƒe ahɔhɔ̃ ŋu, gake vovototo le wo ame evea dome.

Hydranencephaly nye viwòa ƒe ahɔhɔ̃ ƒe akpa aɖe ƒe bu. Esia nye nɔnɔme si mebɔ kura o si woyɔna be hydrocephalus (tsi ƒe ta). Zi geɖe la, vidzĩ siwo ŋu dɔléle sia le ƒe ta lolona.

Gake Holoprosencephaly nye ne ahɔhɔ̃a mema ɖe ɖusime kple miame ƒe akpa vovovowo me nyuie le fugboe ƒe nɔnɔme me o. Èse vovototo ma gɔmea?

Amekawoe nɔnɔme sia gblẽa nu le? Aleke gbegbe wòbɔe?

Holoprosencephaly (HPE) nye dɔléle si gblẽa nu le fugboe siwo le tsitsim le vidzidɔa me ŋu. Zi geɖe la, edzɔna le fugboea ƒe tsitsi ƒe kwasiɖa evelia kple etɔ̃lia me. Esia fia be zi geɖe hafi nànya gɔ̃ hã be yefɔ fu.

Numekulawo bu akɔnta be holoprosencephaly dzea fugboe siwo ade 1 le 250 ɖesiaɖe me dzi le fugboe ƒe gɔmedzedze (fufɔfɔ ƒe kwasiɖa evelia kple etɔ̃lia). Gake fu siawo ƒe akpa gãtɔ wu enu kple fuɖeɖe alo vi kuku.

Eyata holoprosencephaly nye dɔléle si mebɔ o le vidzidzi gbagbewo me, eye wòdzɔna le vidzidzi gbagbe siwo ade 1 le 16,000 ɖesiaɖe me me.

Nukae nye holoprosencephaly (HPE) ƒe dzesiwo?

Esi wònye be holoprosencephaly (HPE) ƒomevi vovovowo li ta la, eƒe sesẽ kple dzesiwo ate ŋu ato vovo. Esia fia be dzesi siawo ate ŋu ato vovo tso ɖevi ɖeka gbɔ yi bubu gbɔ.

Dzesi siwo bɔ

Dzesi siwo bɔ siwo do ƒome kple HPE dometɔ aɖewoe nye:

• Tsitsi ƒe megbetsitsi .
• Susu ƒe nuwɔametɔnyenye.
• Asrãdɔ kple alɔ̃madɔmadɔ.
• Ta sue aɖe ƒe amesinɔnɔ (microcephaly).
• Ta gã aɖe ƒe amesinɔnɔ (macrocephaly).
• Tsi ƒe ƒoƒo ɖe ahɔhɔ̃a me fũ akpa (hydrocephalus).
• Mo ƒe nɔnɔme siwo mesɔ o .
• Aɖu ƒe dɔmawɔmawɔ nyuie (le kpɔɖeŋu me, titina ƒe aɖu ɖeka si wotso).
• Nuyi kple/alo aɖu si me mã.
• Ŋutilã ƒe dzoxɔxɔ, dzi ƒe tsotso, kple gbɔgbɔ dzi ɖuɖu sesẽ.
• Nuɖuɖu sesẽ.

Alobar HPE ƒe nɔnɔmewo

Esiae nye ƒomevi si nu sẽ wu, eyata dzesiawo nu sẽna wu:

• Ŋku ɖeka ƒe amesinɔnɔ (cyclopia), ŋkuwo ƒe tsɔtsɔ ɖe wo nɔewo ŋu akpa (ethmocephaly), alo ŋkumanɔamesi kura (anophthalmia).
• Ŋku sue ŋutɔ (microphthalmia) kple ŋɔti si le abe mɔ̃ ene (proboscis) ƒe amesinɔnɔ.
• No gbadza si ƒe ŋkuwo te ɖe wo nɔewo ŋu (orbital hypotelorism) alo nuyi si me ʋuʋudedi le si dzɔna le nuyi titina (median cleft lip) alo le akpa eveawo (bilateral cleft lip).

Semilobar HPE ƒe nɔnɔmewo

• Ŋku siwo dome didi tso wo nɔewo gbɔ (orbital hypotelorism), ŋku siwo le sue ŋutɔ (microphthalmia), alo ŋku ɖeka alo esi wu nenema (anophthalmia).
• Tɔdzisasrãa kple ŋɔti ƒe nugbɔ ƒe gbadzaƒe.
• ŋɔti ɖeka.
• Nuyi si me ʋuʋu le titina alo nuyi si me ʋuʋu le akpa eve.
• Aɖu si me mã.

Lobar HPE ƒe nɔnɔmewo

Esiae nye esi mesẽ boo o, gake àte ŋu akpɔ dzesi siawo:

• Nuyi si me ʋuʋu le akpa eve.
• Ŋkuawo ƒe nɔnɔmetata si woɖe kpuie.
• No si le gbadzaa alo si nyrɔ.

Nɔnɔme sia si woyɔna be holoprosencephaly ate ŋu adzɔ hã abe domenyiŋusẽfianu ƒe dɔléle vovovo geɖe ƒe akpa aɖe ene. Dzesi kple dzesi tɔxɛ aɖewo le dɔléle siawo dometɔ ɖesiaɖe ŋu.

Nukae hea holoprosencephaly (HPE) vɛ?

Zi geɖe la, fugboe ƒe ahɔhɔ̃ ma ɖe akpa eve me le eƒe tsitsi ƒe gɔmedzedze. Holoprosencephaly (HPE) dzɔna ne ahɔhɔ̃a ƒe akpa si le ŋgɔgbe, si nye prosencephalon, mema ɖe ɖusime kple miame ƒe akpa siwo le ɖusime kple miame nyuie o. Eyae nye be le esi teƒe be ahɔhɔ̃a ƒe akpa si le ŋgɔgbe ƒe miame kple ɖusime naklã keŋkeŋ la, kadodo si mesɔ o le wo ame evea dome.

Etɔxɛe la, holoprosencephaly ate ŋu atso:

• Dzɔdzɔmeŋusẽ ƒe tɔtrɔwo dzɔna le domenyiŋusẽfianu vovovo 14 ya teti me .
• Dzɔdzɔmeŋusẽ ƒe dɔlékuiwo ƒe dɔmawɔmawɔ nyuie .
• Domenyiŋusẽfianu ƒe dɔléle aɖewo .

Gake le go geɖe me la, ɖɔktawo mete ŋu kpɔa nusi tututu gbɔ wòtso o.

Domenyiŋusẽfianu ƒe tɔtrɔwo

Domenyiŋusẽfianu ƒe tɔtrɔ nye tɔtrɔ le wò DNA ƒe ɖoɖo nu. DNA ƒe ɖoɖo sia naa nyatakaka siwo wò lãmenugbagbeviwo hiã be woawɔ woƒe dɔwo. Eyata ne DNA ƒe ɖoɖo aɖe ƒe akpa aɖe mede blibo o alo gblẽ la, àte ŋu akpɔ domenyiŋusẽfianu ƒe nɔnɔme aɖe ƒe dzesiwo.

Vidzĩ ate ŋu anyi domenyiŋusẽfianu ƒe tɔtrɔ ƒe dome tso dzila ɖeka alo evea siaa gbɔ, le alesi wotsɔa tɔtrɔa naa amewoe nu. Gake domenyiŋusẽfianu ƒe tɔtrɔ aɖewo hã dzɔna le vome, si fia be ƒomea me tɔ aɖeke mekpɔ tɔtrɔ sia ƒe ŋutinya o.

Dzɔdzɔmeŋutinunyalawo gblɔ be domenyiŋusẽfianu siwo gbɔna ƒe tɔtrɔwo do ƒome kple nɔnɔmea (HPE):

• `SHH`
• `SIX3`
• `TGIF1`
• `ZIC2`
• `PTCH1`
• `FOXH1`
• `NODAL`
• `CDON`
• `FGF8`
• `GLI2`

Dzɔdzɔmeŋusẽ ƒe tɔtrɔ siawo nana domenyiŋusẽfianuwo kple protein siwo wowɔna la mewɔa dɔ nyuie o. Esiae kpɔa ŋusẽ ɖe fugboe ƒe ahɔhɔ̃ ƒe tsitsi dzi eye wòhea holoprosencephaly vɛ.

Dzɔdzɔmeŋusẽ ƒe domenyiŋusẽfianu ƒe dɔmawɔmawɔ nyuie

Dzɔdzɔmenugbagbevi 46 le mí katã si le míaƒe lãmenugbagbeviwo me, eye woɖo wo ɖe eve eve 23 me. Dzɔdzɔmenugbagbevi siawo tsɔa míaƒe DNA. Kpuie ko la, mɔfiame siwo ana míaƒe ŋutilã natsi ahawɔ dɔ la le wo me. Míexɔa domenyiŋusẽfianu ƒe hatsotso ɖeka tso mía dada gbɔ eye ɖeka tso mía fofo gbɔ.

Vidzĩ siwo wodzi kple holoprosencephaly la dometɔ siwo ade akpa etɔ̃lia ƒe domenyiŋusẽfianu ƒe dɔmawɔmawɔ nyuie. Dzɔdzɔmeŋusẽ ƒe dɔmawɔmawɔ nyuie si do ƒome kple HPE wue nye domenyiŋusẽfianu 13 ƒe kɔpi etɔ̃ ƒe anyinɔnɔ, si woyɔna be trisomy 13. Trisomy 18 (domenyiŋusẽfianu 18 ƒe kɔpi etɔ̃) kple triploidy (domenyiŋusẽfianu 69 ƒe anyinɔnɔ le lãmenugbagbevi me ɖe 46 si sɔ teƒe) hã ate ŋu ahe HPE vɛ.

Domenyiŋusẽfianu ƒe dɔlélewo

Ɣeaɖewoɣi la, holoprosencephaly ate ŋu adzɔ abe domenyiŋusẽfianu ƒe dɔléle aɖewo siwo hea atikewɔwɔ me kuxi bubuwo vɛ tsɔ kpe ɖe HPE ŋu ƒe akpa aɖe ene.

Domenyiŋusẽfianu ƒe dɔléle siwo do ƒome kple HPE dometɔ aɖewoe nye:

• `(Hartsfield ƒe dɔléle)`
• `(Kallman ƒe dɔléle eve)`
• `(Steinfeld ƒe dɔlélea)`
• `(Smith-Lemli-Opitz ƒe dɔléle)`
• `(Stromme ƒe dɔléle)`

Aleke wokpɔa dɔléle si nye holoprosencephaly (HPE) dzea sii?

Zi geɖe la, ɖɔktawo ate ŋu akpɔ holoprosencephaly (HPE), vevietɔ esiwo nu sẽ, hafi woadzi vidzĩ, to ultrasound scan si wowɔna do ŋgɔ na vidzidzi zazã me. Woate ŋu akpɔ nɔnɔmea hã do ŋgɔ na vidzidzi to fugboe ƒe MRI (Magnetic Resonance Imaging) scan dzi.

Togbɔ be dodokpɔ siawo siwo wowɔna do ŋgɔ na vidzidzi ate ŋu ade dzesi HPE hã la, zi geɖe la, wokpɔa HPE le vidzĩa dzidzi megbe , ne mo ƒe dɔmawɔmawɔ nyuie alo ahɔhɔ̃mekawo ƒe kuxiwo dze dzedze gɔme. Emegbe wowɔa ta la ƒe nɔnɔmetatawo dodokpɔwo tsɔ ɖoa ​​kpe dɔlélea dzi.

Ðewohĩ womakpɔ vidzĩ siwo ŋu holoprosencephaly ƒe dɔléle si nu mesẽ kura o le o vaseɖe esime woxɔ abe ƒe ɖeka ene. Le nɔnɔme mawo me la, tsitsi ƒe megbetsitsi ate ŋu anye nusi afia be kuxi aɖe ate ŋu anɔ lãmekawo ŋu. Emegbe ɖɔktawo aɖe gbe be woado ahɔhɔ̃a ƒe nɔnɔmetatawo kpɔ.

Dodokpɔ siwo wowɔna tsɔ dia dɔlélewoe

Ðɔktawo zãa nɔnɔmetata dodokpɔ siwo gbɔna tsɔ dea dzesi holoprosencephaly le vidzĩa dzidzi vɔ megbe:

• Ta ƒe ultrasound: Ultrasound (si woyɔna hã be sonography) nye nɔnɔmetata dodokpɔ si me vevesese aɖeke mele o, si me womewɔa nuvevi ame o, si zãa gbeɖiɖi ƒe ƒutsotsoe siwo ƒe tsɔtsɔme sesẽ tsɔ wɔa lãkusiwo abe ŋutinu ememetɔwo alo ʋukawo ene ƒe nɔnɔmetata gbagbewo alo videowo.
• Magnetic resonance imaging (MRI) ƒe ahɔhɔ̃mekadodo:MRI scan hã nye dodokpɔ si me vevesese aɖeke mele o. Ate ŋu ana viwòa ƒe ahɔhɔ̃ ƒe wɔwɔme kple lãkusiwo nadze ƒã ŋutɔ. MRI zãa magnet gã aɖe, radio ƒe ƒutsotsoewo, kple kɔmpiuta. Mezãa X-ray (kekeli) o.
• Head computed tomography (CT) scan: CT scan nye dodokpɔ si me wozãa X-ray kple kɔmpiuta tsɔ wɔa ŋutilã ƒe akpa si wodo kpɔ (le go sia me la, viwò ƒe ta kple ahɔhɔ̃) ƒe nɔnɔmetata geɖe siwo le akpa etɔ̃ (3D).

Ne anya wɔ la, ɖɔktawo awɔ DNA ŋuti numekukuwo, siwo dometɔ aɖewoe nye domenyiŋusẽfianu me dzodzro, lãmenugbagbeviwo ƒe domenyiŋusẽfianu kple molecule dodokpɔwo, be woanya nusi tututu gbɔ HPE tso.

Ne domenyiŋusẽfianu dodokpɔ ɖee fia be domenyiŋusẽfianu alo domenyiŋusẽfianu ƒe kuxi aɖe si do ƒome kple holoprosencephaly la, wò ɖɔkta ate ŋu aɖo aɖaŋu na wò be nàdi domenyiŋusẽfianu ŋuti aɖaŋuɖoɖo ne èle ɖoɖo wɔm be yeadzi vi bubu.

Nukawoe nye holoprosencephaly (HPE) ƒe atikewo?

Nublanuitɔe la, fifia la, womekpɔ atike alo atike gã aɖeke na dɔléle si nye holoprosencephaly (HPE) o. Ke boŋ ɖɔktawo nɔa te ɖe woƒe dzesi tɔxɛwo dzi daa dɔ na ɖevi ɖesiaɖe si ŋu HPE le. Esia fia be atikewɔwɔ ƒe tiatia vovovowo le ɖevi ɖesiaɖe me.

Atikewɔwɔ sia ate ŋu abia be eŋutinunyala vovovowo ƒe ƒuƒoƒo aɖe nadze agbagba ɖekae, siwo dometɔ aɖewoe nye:

• Ðeviwo ƒe dɔdalawo
• Ahɔhɔ̃ŋutinunyalawo
• Dɔlékuiwutikeŋutinunyalawo
• Amekola siwo wɔa amekolawo
• Dɔwɔɖui kple kamedede ŋuti dɔdamɔnufialawo
• Palliative care ƒuƒoƒo
• Belélename ƒe ƒuƒoƒo si me nuwo sesẽ le

Woate ŋu atsɔ ame mawo tɔgbe ade eme.

Atikewɔwɔ siwo bɔ

Atike siwo wozãna wu ɖe HPE ŋu dometɔ aɖewoe nye esi:

• Atike siwo wozãna tsɔ tsia alɔ̃madɔmadɔ nu be woatsɔ axe mɔ ɖe alɔ̃madɔmadɔ nu, aɖe edzi akpɔtɔ, alo aɖu edzi.
• Ne tsi si me tsi le le viwòa ŋu la, woate ŋu atsɔ ventriculoperitoneal (VP) shunt adae.
• Atikewo kple dɔwɔɖui kple kamedede ate ŋu akpe ɖe ame ŋu le ʋuʋu ƒe kuxiwo abe lãmekawo ƒe sesẽ (spasticity) kple ʋuʋu le lɔlɔ̃nu faa me (dystonia) me.
• Amekoko si wotsɔa plastic gbugbɔa nuyi kple aɖu si me ʋuʋu alo mo ƒe nɔnɔme bubuwo dzrana ɖo.
• Atike siwo woatsɔ ada lãmetsiŋusẽ ƒe masɔmasɔ le lãkusi me.
• Afɔɖeɖewo wɔwɔ be ɖevi siwo nuɖuɖu sesẽ na ƒe nunyiame ɖuɖu nanyo ɖe edzi. Le kpɔɖeŋu me, nuɖuɖu to mɔ̃ me yi dɔgboa me (gastrostomy tube - G-tube).

Wowɔa esiawo katã be wòana ɖevia nakpɔ agbe nyuitɔ kekeake.

Ðe woate ŋu axe mɔ ɖe holoprosencephaly (HPE) nua?

Nublanuitɔe la, holoprosencephaly (HPE) dzɔnaWomate ŋu axe mɔ ɖe dɔléle geɖe nu o. Esia le alea elabena zi geɖe la, domenyiŋusẽfianu ƒe kuxi "ɣla" siwo ƒe dome wonyi gbɔe wotsona. Ne èle ɖoɖo wɔm be yeadzi vi la, anyo be nàƒo nu kple wò ɖɔkta tso domenyiŋusẽfianu dodokpɔ ŋu be nàse afɔku si le viwòa ŋu be domenyiŋusẽfianu ƒe dɔléle alo domenyiŋusẽfianu ƒe tɔtrɔ si ƒe dome wònyi, abe HPE ene, nadze edzi.

Gake dzɔdzɔmeŋutinunyalawo de dzesi afɔku aɖewo siwo ate ŋu ana mɔnukpɔkpɔ si li be fugboe naxɔ holoprosencephaly nadzi ɖe edzi. Esiawo dometɔ aɖewoe nye:

• Suklidɔ ƒe amesinɔnɔ: Ne suklidɔ ƒomevi 1 alo 2 nɔ ŋuwò hafi nèfɔ fu la, àte ŋu adzi vidzĩ si ŋu HPE le. Mele be woatɔtɔ esia kple fufɔfɔ ƒe suklidɔ, si dzɔna le fufɔɣi o.
• Folate (folic acid) ƒe anyimanɔmanɔ: Folate, si nye vitamin B9 ƒe dzɔdzɔme ƒomevi, le vevie na fugboe ƒe tsitsi le lãmesẽ me, vevietɔ ahɔhɔ̃ kple aklã. Folate ƒe anyimanɔmanɔ do ŋgɔ na fufɔfɔ kple le fufɔɣi ate ŋu ana vidzĩ si ŋu HPE le dzidzi ƒe afɔkua nadzi ɖe edzi.
• Teratogens ƒe amedzidzedze: Teratogens nye nusiwo alo nusiwo hea kuxiwo vɛ le fugboe ƒe tsitsi ŋu eye wòhea vidzidzi ƒe gbɔdzɔgbɔdzɔ vɛ. Ne wokpɔ teratogens, abe ethanol (aha), retinoic acid, kple mycotoxins (aɖi siwo le aŋɔ me) tso nuɖuɖu me la, ate ŋu ana vidzĩ si ŋu holoprosencephaly le dzidzi ƒe afɔkua nadzi ɖe edzi.

Eyata ele vevie ŋutɔ be woazɔ ɖe agbe nyui nɔnɔ dzi, aɖu nuɖuɖu si da sɔ, eye woawɔ ɖe atikewɔlawo ƒe aɖaŋuɖoɖowo dzi le fufɔɣi kple do ŋgɔ nɛ.

Nukae nye holoprosencephaly (HPE) ƒe ŋgɔdonya?

Nukpɔsusu, alo nyagblɔɖi, na holoprosencephaly (HPE) toa vovo le nɔnɔmea ƒe sesẽ kple nusi koŋ gbɔ wòtso nu.

Zi geɖe la, mɔkpɔkpɔ na HPE si le titina va ɖo esi nu sẽ la medea ame dzi o. Ðevi ʋɛ aɖewo ŋutɔ siwo ŋu HPE si le titina va ɖo esi nu sẽ le tsi agbe vaseɖe woƒe tsitsime. Zi geɖe la, ɖevi siwo ŋu HPE si nu mesẽ o va ɖo esi mesẽ o nɔa agbe vaseɖe woƒe tsitsime, gake zi geɖe la, ele be woanɔ agbe kple atikewɔwɔ me kuxi siwo do ƒome kple HPE.

Ðevi geɖe siwo ŋu holoprosencephaly le hiã na atikewo kple atikewɔwɔ gbesiagbe be woatsɔ axe mɔ ɖe alɔ̃madɔmadɔ nu eye woada kuxi bubuwo.

Agbenɔƒe didi

Ame si ŋu holoprosencephaly (HPE) le ƒe agbenɔƒe nɔ te ɖe HPE ƒomevi si le esi kple nusi gbɔ dɔlélea tso dzi.

Zi geɖe la, vidzĩ siwo ŋu Alobar HPE (si nye dɔléle si nu sẽ wu) le kuna abe vi kukuwo ene, le wo dzidzi megbe kpuie alo le woƒe agbenɔƒe ƒe ɣleti ade gbãtɔwo me.

Ðevi siwo ŋu semilobar alo lobar HPE le, eye ŋutinu bubu siwo mesɔ o mele wo ŋu o ƒe 50% kple edzivɔ nɔa agbe ɣleti 12 ya teti.

Zi geɖe la, ɖevi siwo ŋu HPE ƒe dɔléle si nu mesẽ o le la nɔa agbe vaseɖe woƒe tsitsime.

Ne holoprosencephaly (HPE) le vinyea ŋu la, nukae wòle be makpɔ mɔ na?

Esia le vevie ŋutɔ. Ðo ŋku edzi be ɖevi eve siwo ŋu holoprosencephaly (HPE) le la mekpɔa dɔlélea le mɔ ɖeka nu o. Mɔ aɖeke meli si dzi nàto anya alesi wòagblẽ nu le viwòa ŋui kple kakaɖedzi o. Nu nyuitɔ si nàte ŋu awɔ atsɔ adzra ɖo ɖe etsɔme ŋue nye be nàƒo nu kple eŋutinunyala bibi siwo wɔa numekuku hedaa holoprosencephaly. Woate ŋu ana nyatakaka bubuwo wò tso esia ŋu.

Aleke malé be na vinye si ŋu holoprosencephaly (HPE) le?

Be nàkpe asi ɖe viwò si ŋu holoprosencephaly (HPE) le dzi kpɔkpɔ ŋu la, wɔ ɖe aɖaŋuɖoɖo siawo siwo tso woƒe ɖɔktawo gbɔ dzi:

• Na atike ɖesiaɖe si woŋlɔ na wò abe alesi wogblɔe ene.
• Kpɔ tsitsi ƒe dodokpɔwo kple atikewɔwɔwo ɖa.
• Kpɔ egbɔ be yede atikewɔlawo ƒe sasrãkpɔ siwo katã woawɔ atsɔ akplɔe ɖo.

Holoprosencephaly ate ŋu ahe susuŋudɔwɔwɔ, ahɔhɔ̃mekawo ƒe dɔwɔwɔ, kple/alo lãmekawo ƒe dɔwɔwɔ ƒe kuxiwo vɛ. Ðevi geɖe siwo ŋu HPE le la ƒe tsitsimekuxiwo le wo ŋu eye woate ŋu ahiã kpekpeɖeŋu le gbesiagbedɔwo wɔwɔ me le woƒe agbemeŋkekewo katã me.

Viwòa ƒe atikewɔlawo ƒe ƒuƒoƒo ate ŋu aɖo wò biabiawo ŋu eye woana kpekpeɖeŋu wò. Woate ŋu afia mɔ wò hã ayi kpekpeɖeŋunaha siwo le miaƒe nutoa me alo le Internet dzi. Ðo ŋku edzi be menye wò ɖeka koe o.

Ɣekaɣie wòle be makpɔ vinyea ƒe ɖɔkta?

Ne wokpɔe be holoprosencephaly (HPE) le viwòa ŋu la, ahiã be woayi woƒe atikewɔlawo ƒe ƒuƒoƒoa gbɔ edziedzi be woakpɔ egbɔ be yewoƒe atikewɔwɔa le dɔ wɔm eye woada woƒe tsitsime kpɔ.

Ne èva nya be holoprosencephaly le viwòa ŋu la, ate ŋu asesẽ be nànɔ te ɖe enu. Gake nyae be menye wò ɖeka koe o. Nu geɖewo li siwo akpe ɖe mia kple wò ƒomea ŋu. Ele vevie be nàƒo nu kple ɖɔkta si nya nu tso nɔnɔme sia ŋu. Esia akpe ɖe ŋuwò nànya nu geɖe tso ale si wòagblẽ nu le viwòa ŋu kple ale si nàdzra ɖo ɖe eŋu.

Mlɔeba la, nusiwo dzi wòle be woaɖo ŋkui (Take-Home Message) .

Holoprosencephaly (HPE) nye vidzidzi ƒe gbɔdzɔgbɔdzɔ sesẽ aɖe si dzɔna ne vidzĩ ƒe ahɔhɔ̃ mema ɖe akpa eve me nyuie le vidzidɔa me o.

• Wole ƒomevi vovovowo kple alesi wòsẽnae , eyata dzesiawo toa vovo tso ɖevi ɖesiaɖe gbɔ.
• Zi geɖe la, domenyiŋusẽfianu kple domenyiŋusẽfianu ƒe dɔmawɔmawɔ nyuie kpɔa gome le eme, gake ɣeaɖewoɣi la, womate ŋu ake ɖe nusi gbɔ wòtso ŋu o.
• Togbɔ be woate ŋu akpɔe do ŋgɔ na vidzidzi to ultrasound alo MRI dzi hã la, zi geɖe la, vidzidzi megbe koe wokpɔnɛ le.
• Atike aɖeke meli koŋ o , gake atike vovovowo li siwo dzi woato aɖu dzesiawo dzi ahado alɔ ɖevia.
• Nukpɔsusua toa vovo le alesi nɔnɔmea nu sẽe nu. Le nɔnɔme siwo mesẽ o me la, ɖeviwo ate ŋu anɔ agbe vaseɖe tsitsime.
• Ne èfɔ fu alo nèle ɖoɖo wɔm be yeafɔ fu la, kpɔ nyuie le nuwo abe wò suklidɔ dzi ɖuɖu kple folic acid nono ŋu.
• Menye wò ɖeka koe le nɔnɔme sia me o. Àte ŋu axɔ kpekpeɖeŋu tso ɖɔktawo, aɖaŋuɖolawo, kple kpekpeɖeŋunahawo gbɔ. Nyatakaka siwo de pɛpɛpɛ kple kpekpeɖeŋu le vevie ŋutɔ.

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