Ðe teƒe alo ƒunukpeƒetetedɔ wɔnukuwo le wò ŋutilã ŋua? Mina míaƒo nu tso Neurofibromatosis (NF) ŋu!

Ðe teƒe mawo siwo ƒe amadede le abe kɔfi ene siwo ɖewohĩ èkpɔ tso wò ɖevime ke la le ŋuwòa? Alo ɖe nu suesuesue siwo le ƒuƒlu siwo dzena le wò ŋutilã ƒe teƒe aɖewo la nɔa ŋuwò ɣeaɖewoɣia? Ðewohĩ menye teƒeteƒewo alo ƒunukpeƒewo koe esiawo nye o. Egbea míele nu ƒom tso nɔnɔme aɖe si ate ŋu anɔ nenema ŋu, eye wòsesẽ vie gake gɔmesese le eŋu. Emae nye Neurofibromatosis , alo NF kpuie.

Nukae nye Neurofibromatosis (NF) ƒe dɔléle?

Kpuie ko la, Neurofibromatosis (NF) nye dɔlélewo ƒe ƒuƒoƒo aɖe si gblẽa nu le míaƒe lãmekawo kple domenyiŋusẽfianuwo ŋu . Egblẽa nu le míaƒe ahɔhɔ̃, aklã, lãmekawo, kple ŋutigbalẽ ŋu. Dzesi siwo nèkpɔna ate ŋu ato vovo tso ame ɖeka gbɔ yi bubu gbɔ, eye woato vovo hã le NF ƒomevi si le ŋuwò nu. Gake dzesi siwo bɔ wue nye dzidzi ƒe dzesiwo kple dɔdzẽ siwo zi geɖe menye kansa o (siwo me dɔlékui aɖeke mele o). Àte ŋu anyi nɔnɔmea ƒe dome tso wò ƒomea, si nye wò domenyiŋusẽfianu hã gbɔ. Gake nukutɔe la, le nɔnɔme siwo ade 50% me la, ate ŋu adzɔ le vome, ƒome ŋutinya aɖeke manɔmee.

Nukawoe nye Neurofibromatosis (NF) ƒomevi veviwo?

NF siawo ƒomevi vevi etɔ̃e li. Na míakpɔ nusiwo wonye ɖa.

1. Ahɔhɔ̃mekawo ƒe dɔléle ƒomevi 1 (NF1) .

Esiae nye NF ƒomevi si bɔ wu . Edzɔna ne:

• Café au lait teƒewo: Esiawo le abe teƒe siwo ƒe amadede nye kɔfi ene. Woate ŋu adze le ŋutilãa ƒe akpa sia akpa.
• Neurofibromas: Dɔdzẽ suesuesue siwo dzɔna ɖe lãmekawo dzi.
• Akɔta kple akɔta ƒe ʋuʋudedi: Wodzena abe teƒe suesuesuewo ene.
• Ŋku ƒe lãmekawo ƒe dɔdzẽ: Esiawo ate ŋu ado mo ɖa le lãmeka siwo do ƒome kple ŋkua me.
• Ƒu ƒe dɔmawɔmawɔ nyuie: Le kpɔɖeŋu me, nuwo abe ƒumeŋuɖui ene.

Bu eŋu kpɔ, nyɔnuvi sue aɖe li si ŋkɔe nye Nimali. Esi wodzii la, teƒe geɖe siwo ƒe amadede nye kɔfi si le abe notsi ene nɔ eƒe ŋutilã ŋu. Esi wònɔ tsitsim vie la, teƒe suesuesuewo hã do ɖe eƒe akɔta. Esi wòtsɔ wo fia ɖɔkta aɖe ko hafi wòva nya be NF1 le ye ŋu.

2. Schwannomatosis si do ƒome kple NF2 (si woyɔna tsã be Neurofibromatosis type 2 (NF2)) .

Esia ƒomevi dzɔna:

• Ahɔhɔ̃meka siwo tsina blewu: Esiawo hã dzɔna ɖe lãmekawo ŋu.
• Tosese ƒe dɔmawɔmawɔ nyuie: Tosese ƒe kuxi ate ŋu adzɔ.
• Nukpɔkpɔ ƒe tɔtrɔ: Nuwo abe ŋkudɔ ene ate ŋu adzɔ.
• Afɔku alo gbɔdzɔgbɔdzɔ: Àte ŋu ase le ɖokuiwò me be yeƒe abɔwo le ʋuʋum (peripheral neuropathy).

3. Schwannomatosis (SWN) ƒe dɔléle .

Esiae nye ƒomevi si mebɔ o wu . Esia ƒe hatsotso sue geɖe li, le domenyiŋusẽfianu ƒe tɔtrɔ nu. Ɣeaɖewoɣi la, ɖewohĩ dzesi aɖeke manɔ eŋu kura o. Gake ne dzesiawo dze la, nu siwo ate ŋu adzɔ dometɔ aɖewoe nye esi:

• Lãmetsiŋusẽ ƒe dɔdzẽ siwo le tsitsim blewu (Schwannomas):Nusiawo ate ŋu adzɔ le ŋutilã ƒe akpa ɖeka ko.
• Vevesese si nɔa anyi didi.
• Asibidɛwo ƒe ʋuʋu kple dɔdzẽ.

Aleke gbegbee Neurofibromatosis (NF) bɔe?

Ne míagblɔe gbadzaa la, NF1 ye nye NF ƒe dɔlélewo katã ƒe 96% lɔƒo. Ema fia be vidzĩ 3,000 siwo wodzina ƒe sia ƒe le xexeame katã dometɔ ɖeka lɔƒoe wòxɔa esia. NF2 nye abe 3% ene, si fia be abe vidzĩ 33,000 ɖesiaɖe si wodzi dometɔ ɖeka ene. Schwannomatosis (SWN) mebɔ kura gɔ̃ hã o, edzɔna le abe 1% ene me.

Nukae nye Neurofibromatosis (NF) ƒe dzesiwo?

Abe alesi míegblɔe va yi ene la, dzesiawo toa vovo le NF ƒe ƒomevi nu. Ðewohĩ dzesi aɖeke manɔ ame aɖewo ŋu kura o, gake dzesi sesẽwo ate ŋu anɔ ame bubuwo ŋu. Gake nu vevi eve aɖewo li siwo bɔ ɖe ƒomevi etɔ̃awo katã me:

• Dɔdzẽ: Esiawo nye lãkusi siwo dzɔna ne lãmenugbagbeviwo va ƒo ƒu. Lãmenugbagbevi ƒomevi vovovowoe nye NF dɔdzẽ ƒomevi vovovowo. Zi geɖe la, dɔdzẽ siawo tsina blewu eye womenye kansa (siwo me dɔlékui aɖeke mele o) o . Gake ƒã ŋutɔ be dɔdzẽ aɖewo ate ŋu azu kansa. Woyɔa dɔdzẽ siawo siwo dzɔna ɖe lãmekawo dzi be Neurofibromas .

• Ŋutilã ƒe tsitsi: Esiawo dometɔ aɖewoe nye dzigbedzesiwo, abe café au lait teƒe siwo ŋu míeƒo nu tsoe va yi ene, kpakple ʋuʋudedi siwo dona le akɔta kple akɔta ƒe teƒewo. Ɣeaɖewoɣi la, ƒuƒu suesuesue siwo fa, siwo lolo abe pea ene (cutaneous neurofibromas) hã ate ŋu adzɔ ɖe ŋutigbalẽa dzi.

Nu vevitɔe nye be màgavɔ̃ be NF le ye ŋu le esi teƒe eve aɖewo le ye ŋu abe esia ene ta ko o. Gake ne ɖikeke aɖe le mewò la, anyo wu be nàdi atikewɔlawo ƒe aɖaŋuɖoɖo.

Tsɔ kpe ɖe dzesi vevi siawo ŋu la, dzesi bubuwo ate ŋu adze:

• Tosese alo nukpɔkpɔ ƒe dɔmawɔmawɔ nyuie.
• Scoliosis ƒe dɔléle.
• Lãmetsiwo ƒe gbɔdzɔgbɔdzɔ.
• Afɔ kple afɔwo ƒe ʋuʋu alo ʋuʋudedi.
• Ŋutilã ƒe vevesese kple taɖuame.
• Nuwɔna ƒe tɔtrɔ, abe Attention-Deficit/Hyperactivity Disorder (ADHD) ene.
• Nusɔsrɔ̃ ƒe kuxiwo.
• Nɔnɔmewo abe alɔ̃madɔmadɔ ene.

Aleke amesi ŋu Neurofibromatosis (NF) le la le?

Esia toa vovo ŋutɔŋutɔ tso ame ɖeka gbɔ yi bubu gbɔ. Ame aɖewo ate ŋu akpɔ ƒuƒu suesuesue siwo le goglo (anɔ abe sentimeta ɖeka ene, siwo ƒe lolome anɔ abe pea ene) le woƒe ŋutigbalẽ ŋu. Esiawo nye ahɔhɔ̃mekawo ƒe dɔlékuiwutikewo. Ame aɖewo ate ŋu akpɔ ƒunukpeƒetetedɔ siawo dometɔ siwo wu eve, alo ate ŋu anye be ƒu gã aɖe (plexiform neurofibroma) si me lãmeka geɖe siwo le ŋutigbalẽa te le la le wo ŋu.

Míeƒo nu tso café au lait teƒewo ŋu. Esiawo ƒe lolome kple nɔnɔme ate ŋu atso gbadzaa, si ƒe amadede nye aŋutiɖiɖi va ɖo aŋutiɖiɖi vivi. Zi geɖe la, àkpɔ teƒe siawo dometɔ ade alo esi wu nenema .

Enye nusi sɔ be teƒe aɖewo nanɔ míaƒe mo. Gake le NF me la, teƒe siawo dzena le abɔta kple akɔta ƒe teƒewo.Esiawoe nye esiwo bɔ wu. Wodzena abe teƒe suesuesue siwo ƒe amadede nye aŋutiɖiɖi ene.

Ƒe nenie Neurofibromatosis (NF) ƒe dzesiwo dzena le?

Esia hã toa vovo tso ame ɖeka gbɔ yi bubu gbɔ. Dzesi aɖewo ate ŋu anɔ anyi le vidzidzi me. Wo dometɔ aɖewo ate ŋu adze ne èle tsitsim, le wò ƒewuiwo me, alo ne ètsi. Le kpɔɖeŋu me, neurofibromas ate ŋu anɔ vidzĩ aɖewo ƒe ŋutigbalẽ ŋu le wo dzidzi me. Gake zi geɖe la, wodzena le ƒewuiwo me. Café au lait teƒewo bɔ le ɖevi ƒe agbe ƒe ƒe ʋɛ gbãtɔwo me. Aɖuɖɔtoewo ate ŋu adze le akɔta kple akɔta ne woxɔ tso ƒe 3 va ɖo ƒe 5. Zi geɖe la, schwannomatosis ƒe dzesiwo dzea egɔme tso ame tsitsi me, le ƒe 30 xɔxɔ lɔƒo.

Nukae hea Neurofibromatosis (NF) vɛ?

Nusi koŋ gbɔ esia tsoe nye tɔtrɔ (trɔtrɔ) si va le míaƒe domenyiŋusẽfianuwo me . Mina míalé ŋku ɖe nusiwo hea ƒomevi ɖesiaɖe vɛ ŋu:

• Neurofibromatosis type 1 (NF1): Domenyiŋusẽfianu aɖe si woyɔna be NF1 le míaƒe ŋutilã me. Esia kpɔa protein si woyɔna be neurofibromin ƒe wɔwɔ dzi. Dɔ si protein sia wɔnae nye be wòaxe mɔ ɖe dɔdzẽwo ƒe wɔwɔ nu.
• NF2-associated schwannomatosis/Neurofibromatosis type 2 (NF2): Domenyiŋusẽfianu aɖe si woyɔna be NF2 (merlin) gbɔe esia tsona . Esia hã kpɔa ŋusẽ ɖe protein bubu si woyɔna be neurofibromin dzi. Protein sia xea mɔ na dɔdzẽ ƒe wɔwɔ hã.
• Schwannomatosis: Esia ate ŋu atso domenyiŋusẽfianu siwo nye SMARCB1 alo LZTR1 ƒe tɔtrɔ gbɔ. Gake le go geɖe me la, womate ŋu ade dzesi domenyiŋusẽfianu si tututu hea nɔnɔme sia vɛ o.

Kpuie ko la, ne domenyiŋusẽfianu ene siawo dometɔ aɖe ƒe tɔtrɔ aɖe va la, proteinawo mexɔa mɔfiame siwo hiã be woatsɔ akpɔ míaƒe lãmenugbagbeviwo ƒe tsitsi dzi o. Ɣemaɣie dɔdzẽwo dzea wɔwɔ gɔme le ŋutilãa me.

Àte ŋu anyi NF1 alo NF2 dome tso dziwòlawo gbɔ, si woyɔna be autosomal dominant pattern . Esia fia be ɖeko wòle be nàxɔ domenyiŋusẽfianu si wogbugbɔ trɔ la ƒe kɔpi tso dziwòlawo dometɔ ɖeka gbɔ hafi dɔlélea nadze ŋuwò. Gake amesiwo ŋu NF1 le ƒe afã lɔƒo xɔae le wo ɖokui si, eye ƒome ŋutinya aɖeke menɔa wo ŋu o. Esia ate ŋu adzɔ ɖe amesiwo ŋu NF2 le hã dzi. Ame siwo ŋu schwannomatosis le dometɔ siwo ade 85% xɔa nɔnɔmea le wo ɖokui si, eye ƒome ŋutinya aɖeke mele wo si o.

Nukawoe nye nusiwo ate ŋu ana woaxɔ Neurofibromatosis (NF)?

Nɔnɔme sia ate ŋu adze ame sia ame dzi, gake ne NF dɔléle siawo dometɔ ɖeka le wò ƒomea me la, anɔ eme be wò hã nàxɔe.

Nukawoe nye kuxi siwo ate ŋu ado tso Neurofibromatosis (NF) me?

NF ate ŋu ahe kuxi aɖewo vɛ. Wo dometɔ aɖewoe nye:

• Tosese ƒe dɔmawɔmawɔ nyuie.
• Nukpɔkpɔ dzi ɖe kpɔtɔ.
• Vevesese si nɔa anyi ɖaa.
• Nusɔsrɔ̃ kple nuwɔna ƒe kuxiwo.
• Dzitodzito ƒe nɔnɔmewo - le kpɔɖeŋu me, ʋusɔgbɔdɔ, dzitodzito ƒe nɔnɔme siwo wodzina.
• Bubudede ame ɖokui ŋu ƒe nyawo le ŋutigbalẽ ƒe nɔnɔmewo ta.
• Kansa xɔxɔ ƒe afɔku si lolo wu amehawo katã, siwo dometɔ aɖewoe nye no me dɔdzẽ kple lãmeka falɛfalɛwo ƒe kansa (sarcoma).

Vevietɔ: NF-dɔdzẽ akpa gãtɔ menye kansa o. Gake ƒã ŋutɔ be NF dɔdzẽ aɖewo ate ŋu azu kansa. Eyata ele vevie ŋutɔ be woado wo kpɔ le atikewɔƒewo edziedzi.

Aleke wokpɔa Neurofibromatosis (NF) ƒe dɔlélea?

Ðɔkta aɖe ado wò kpɔ eye wòawɔ dodokpɔ siwo hiã be woatsɔ anya NF. Woado wò ŋutigbalẽ kpɔ gbã be woakpɔe ɖa be café au lait ƒe teƒeteƒewo alo neurofibromas ƒe dzesiwo le ŋuwò hã. Woalé ŋku ɖe scoliosis, ʋu ƒe sisi, nukpɔkpɔ, kple nusese hã ŋu. Woabia nya tso wò lãmesẽ kple ƒomea ƒe atikewɔwɔ ŋutinya hã ŋu. Eyata ne ènya be NF le wò ƒomea me la, kpɔ egbɔ be yegblɔe na wò ɖɔkta.

Dzesi siwo wotsɔ dea dzesi NF ƒomevi ɖesiaɖe la to vovo. Togbɔ be zi geɖe la, dɔdamɔnu dodokpɔ ate ŋu ana woakpɔ dɔlélea hã la, dodokpɔ aɖewo ate ŋu akpe ɖe ŋuwò nànya nusi gbɔ wò dzesiawo tso. Nɔnɔmetatawo dodokpɔ, abe MRI, X-ray, alo CT scan ene, ate ŋu aɖe alesi nɔnɔmea kpɔ ŋusẽ ɖe wò lãmekawo dzii afia. Domenyiŋusẽfianu dodokpɔ ate ŋu akpe ɖe ŋuwò hã nànya domenyiŋusẽfianu ƒe tɔtrɔ si le wò dzesiwo hem vɛ. Gake ɖɔktawo mekpɔ de dzesi domenyiŋusẽfianu siwo katã hea dɔlélea vɛ haɖe o.

Ɣeaɖewoɣi la, womekpɔa dzesiawo dzea sii o vaseɖe ƒe geɖe le woƒe dzedze megbe hafi. Wokpɔa ame aɖewo be wotsi. Esia le alea elabena NF ƒe dzesiwo doa mo ɖa le ɣeyiɣi aɖe megbe, le afɔɖeɖe vovovowo me.

Nukawoe nye Neurofibromatosis (NF) ƒe atikewo?

Esia le vevie ŋutɔ: Ele be wò NF-dɔdamɔnu nanɔ ɖɔkta siwo bi ɖe NF dɔnɔwo ŋu ƒe ƒuƒoƒo aɖe si me tɔwo wɔa dɔ vovovowo ƒe mɔfiafia te . Zi geɖe la, ƒuƒoƒo sia ƒe akpa aɖewoe nye:

• Ahɔhɔ̃mekawo ƒe dɔdzẽŋutinunyalawo.
• Ahɔhɔ̃mekaŋutinunyalawo.
• To, ŋɔti kple ŋɔti ƒe amekolawo (ENT amekolawo).
• Amekola siwo wɔa amekolawo.
• Tagbɔdɔdalawo.
• Toŋutinunyalawo.
• Domenyiŋusẽfianu ŋuti aɖaŋuɖolawo.

Togbɔ be womekpɔ atike aɖeke na NF fifia o hã la, ŋgɔyiyi geɖe va le dɔdzẽ siwo do ƒome kple NF didi kple wo dada me. Wò ɖɔkta afia mɔ wò le atike nyuitɔ kekeake si nàzã na wò nɔnɔmea ŋu.

Ne dzesi aɖeke mele ŋuwò o, alo wò dzesiwo medo kplamatse wò gbesiagbegbenɔnɔ o la, ɖewohĩ màhiã atike aɖeke o. Ne edzɔ alea la, wò ɖɔkta abia tso asiwò be nàva doe kpɔ zi ɖeka alo zi eve le ƒea me atsɔ alé ŋku ɖe dɔlélea ƒe ŋgɔyiyi ŋu.

Ðɔktaa ate ŋu akafu atikewɔmɔnuwo abe:

• Dɔdzẽ ɖeɖeɖa:Amekoko ate ŋu aɖe dɔdzẽ siwo le ŋutigbalẽa kple ŋutilã ƒe akpa bubuwo ɖa.
• Atikewo: United States ƒe Nuɖuɖu Kple Atike Ŋuti Dɔwɔƒe (FDA) da asi ɖe atike si nye selumetinib dzi be wòatɔ te dɔdzẽ ƒe lãmenugbagbeviwo ƒe tsitsi le ɖevi siwo xɔ tso ƒe 2 va ɖo ƒe 18 siwo ŋu NF1 le siwo ŋu plexiform neurofibroma tumors siwo womate ŋu aɖe to amekoko me o, alo amesiwo ƒe dɔdzẽwo na wozu nuwɔametɔwo alo woƒe nɔnɔme trɔ la me.
• Amekoko be woatsɔ aɖɔ ƒu ƒe tsitsi ƒe masɔmasɔwo ɖo: Ne ƒu ƒe tsitsi alo ƒu ƒe tsitsi ƒe kuxi bubu aɖe le ŋuwò la, wò ɖɔkta ate ŋu aɖo aɖaŋu na wò be nàzã akɔtaɖonu alo le nɔnɔme sesẽwo me la, nàwɔ dɔ na wò.
• Atikewɔwɔ: Wowɔa atike sia na dɔdzẽ vɔ̃ɖiwo. Atikewo zazã gblẽa kansadɔlékuiwo.
• Kekelidɔdada: Woate ŋu azã keklẽŋusẽdɔdamɔnu atsɔ akpɔ dɔdzẽ ƒe tsitsi dzi le kansawo abe no me dɔdzẽ, lãmeka falɛfalɛwo ƒe kansa si woyɔna be sarcoma, malignant peripheral nerve sheath tumors (MPNST), alo glioma (ahɔhɔ̃ me dɔdzẽ) me.

Ne NF gblẽ nu le wò to alo nukpɔkpɔ ŋu la, wò ɖɔkta ate ŋu aɖo aɖaŋu na wò be nàzã kpekpeɖeŋunu abe tomemɔ̃ alo ŋkumeɖonu siwo ɖɔa ame ɖo ene.

Ðe atikewɔwɔa ƒe nugbegblẽ aɖewo lia?

Atikewɔwɔ ɖesiaɖe ate ŋu agblẽ nu le ame ŋu. Wò ɖɔkta adzro nusiawo me kpli wò hafi adze atikewɔwɔ gɔme.

Amekoko ƒe nugbegblẽ le ame ŋu siwo ate ŋu ado tso eme:

• Ʋu si le dodom.
• Dɔdzedze.
• Neurofibromas si trɔna gbɔna le eɖeɖe vɔ megbe.
• Lãmetsiŋusẽ ƒe gbegblẽ.

Atikewɔmɔnu ƒe nugbegblẽ le ame ŋu:

• Ɖeɖiteameŋu.
• Aɖuɖɔtoe alo dɔmeɖui.
• Taɖa ƒe ŋeŋe.
• Nuɖuɖua mevivina o.
• Aɖuɖɔtoe kple ʋuʋudedi.

Nukae nye ame si ŋu Neurofibromatosis (NF) le ƒe agbenɔƒe?

Zi geɖe la, ahɔhɔ̃mekawo ƒe dɔléle (NF) mekpɔa ŋusẽ gã aɖeke ɖe wò agbenɔƒe dzi o. Gake le afisi dɔdzẽawo le nu la, wò gbesiagbedɔ aɖewo, abe nusese kple nukpɔkpɔ ene, wɔwɔ ate ŋu asesẽ ne womekpe ɖe ŋuwò o. Ne womekpɔ egbɔ o la, kuxi aɖewo, abe kansa ene, ate ŋu ade ame ƒe agbe afɔku me.

Ðe woate ŋu axe mɔ ɖe Neurofibromatosis (NF) nua?

Fifia la, womenya mɔ aɖeke si dzi woato axe mɔ ɖe NF nu o. Ne èle ɖoɖo wɔm be yeaɖo ƒome anyi la, anyo be nàƒo nu kple domenyiŋusẽfianu ŋuti aɖaŋuɖola aɖe be nànya nu geɖe tso afɔku si le vidzidzi si me domenyiŋusẽfianu ƒe dɔléle aɖe le ŋu.

Ɣekaɣie wòle be makpɔ ɖɔkta?

Kpɔ ɖɔkta ne wò alo viwòa de dzesi NF ƒe dzesi siawo dometɔ aɖe le woƒe ŋutigbalẽ ŋu:

• Café au lait teƒe ade alo esi wu nenema ƒe amesinɔnɔ.
• Ŋutilã me ƒuƒuwo dzena le susu aɖeke manɔmee.
• Teƒe siwo le abɔta alo akɔta.

Dzesi bubu siwo hiã be woayi ɖɔkta gbɔ:

• Tɔtrɔ siwo va le wò tosese kple/alo nukpɔkpɔ me.
• Vevesese si me susu mele o.
• Lãmetsiwo ƒe gbɔdzɔgbɔdzɔ.
• Asibidɛwo kple afɔbidɛwo ƒe ʋuʋu alo ʋuʋudedi.

Ne NF le ŋuwò la, anɔ eme be wò ɖɔkta aɖo aɖaŋu na wò be nàva do wò kpɔ edziedzi (zi geɖe la, ɣleti 6 va ɖo 12 ɖesiaɖe) be nàlé ŋku ɖe wò dzesiwo ŋu. Kpɔ egbɔ be yewɔ ɖoɖo ɖe ɣeyiɣi bubu ŋu ne dzesi yeyewo va dze ŋuwò alo ne dzesi aɖe si li xoxo la gagblẽ ɖe edzi.

Nya kawoe wòle be mabia nye ɖɔkta?

• Nukae le nye dzesiwo hem vɛ?
• Afɔku kae le vinye siwo ava va nyi nɔnɔme sia ƒe dome?
• Atikewɔwɔ ka ƒomevie nèkafu?
• Ðe atikewɔwɔa ƒe nugbegblẽ aɖewo lia?
• Zi nenie wòle be mava be woawɔ dodokpɔ siwo akplɔe ɖo?
• Ðe dɔdamɔnu dodokpɔ aɖewo li siwo ŋu mate ŋu akpɔa?
• Ðe wòle be makpɔ vidzidzi ŋuti nunyala bibi aɖea?

Neurofibromatosis nye dɔléle si gblẽa nu le wò lãmekawo kple ŋutigbalẽ ŋu. Ate ŋu akpɔ ŋusẽ ɖe dziwò le mɔ vovovowo nu. Ðewohĩ dzesi aɖewo anɔ ŋuwò siwo ado kplamatse wò gbesiagbedɔwo, alo dzesi aɖeke manɔ ŋuwò kura o. Zi geɖe la, le alesi wò dzesiwo dzena ne èle tsitsim nu la, ate ŋu axɔ ƒe geɖe hafi dziɖuɖua nakpɔ dɔlélea le ŋuwò. Ne ènya kpɔ dɔléle sia ko la, nusi tututu le edzi yim nyanya ate ŋu anye gbɔdzɔe gã aɖe. Wò atikewɔlawo ƒe ƒuƒoƒo ate ŋu akpe ɖe ŋuwò nànya nu geɖe tso alesi nɔnɔme sia ate ŋu akpɔ ŋusẽ ɖe dziwò kple ɖewohĩ wò ƒome si ava va dzii ŋu. Togbɔ be atike aɖeke meli o hã la, atikewɔmɔnu aɖewo li.

Nu vevitɔ kekeake si dzi wòle be nàɖo ŋkui (Take-Home Message) .

Neurofibromatosis (NF) menye nusi wòle be woavɔ̃ na o, gake enye nusi ŋu wòle be woanya.

• Ne teƒe siwo mebɔ o, ƒunukpeƒewo le wò ŋutigbalẽ ŋu, alo teƒe geɖe le wò abɔta/akɔta la, yi ɖɔkta gbɔ .
• NF ƒomevi vovovowoe li, eye dzesiawo to vovo na wo dometɔ ɖesiaɖe.
• Esia nye domenyiŋusẽfianu ƒe nɔnɔme, gake menye ɣesiaɣie wòdzɔna le ƒomewo me o.
• Togbɔ be atike aɖeke meli o hã la, atikewɔmɔnu geɖe li siwo akpe ɖe ame ŋu wòaɖu dzesiawo dzi ahanɔ agbe nyuie wu .
• Ele vevie ŋutɔ be woawɔ atike na ame le atikewɔlawo ƒe ƒuƒoƒo bibi aɖe ƒe dzikpɔkpɔ te.
• Ele vevie be woado wo kpɔ le atikewɔƒewo edziedzi eye woanɔ ŋudzɔ ɖe dzesi yeyewo ŋu.

Ne nyabiase bubu aɖewo gale asiwò ku ɖe esia ŋu la, mègahe ɖe megbe le nuƒoƒo kple wò ɖɔkta me o. Adzɔ dzi na wo be yewoakpe ɖe ŋuwò.

` Neurofibromatosis, NF, lãmekawo ƒe dɔdzẽ, café-au-lait ƒe teƒeteƒewo, domenyiŋusẽfianu ƒe dɔlélewo, ŋutigbalẽ ƒe teƒeteƒewo, lãmekawo ƒe dɔwɔwɔ