Ne ède dzesii zi ɖeka le viwòa ƒe ŋutigbalẽ ŋu siwo ƒe amadede le keklẽm alo ne èle alɔ̃madɔmadɔ si womenya o gbɔ kpɔm la, ke ele dzɔdzɔme nu be nàtsi dzimaɖi. Esiawo ate ŋu anye dɔléle aɖe si woyɔna be Tuberous Sclerosis Complex (TSC) ƒe dzesiwo ɣeaɖewoɣi, si ŋu womeƒoa nu tsoe le dutoƒo zi geɖe o. Gbãtɔ kple vevitɔ la, taflatse mègatsi dzodzodzoe o. Ne èse nɔnɔme sia gɔme nyuie la, àte ŋu akpɔ egbɔ dzidzedzetɔe. Mina míadzro nusianu si wòle be nànya me le nya bɔbɔewo me.
Nukae nye Tuberous Sclerosis Complex (TSC) ƒe dɔléle?
Bu wò ŋutilã ƒe lãmenugbagbeviwo be wonye dɔwɔla dovevienuwo. Womãna hetsina ne ehiã, eye emegbe ne wonya wu woƒe dɔa nu ko la, wodzudzɔna. Gake le amesi ŋu TSC le gome la, vodada sue aɖe le dɔwɔwɔ si kpɔa lãmenugbagbeviwo ƒe mama dzi la me. Esia wɔe be lãmenugbagbeviwo medzudzɔa mama le ɣeyiɣi si wòle be woadzudzɔ o.
Ne lãmenugbagbeviwo ma le mɔ si dzi womate ŋu aɖu o nu la, ena dɔdzẽwo tsina le ŋutilã ƒe akpa vovovowo, abe ahɔhɔ̃, ayiku , dzi , lãkusi , ŋutigbalẽ, kple ŋku ene. Nu vevitɔ kekeake si wòle be nànyae nye be dɔdzẽ mele dɔdzẽ siawo ŋu o . Gake woate ŋu ahe nya vovovowo vɛ le afisi wotsi le nu. Ame miliɔn geɖe le agbe kple nɔnɔme sia le xexeame godoo. Dzɔgbenyuietɔe la, egbegbe atikewɔmɔnu nyuiwo li egbea be woatsɔ akpɔ dzesiawo gbɔ ahaɖe dzidziɖedzi siawo dzi akpɔtɔ.
Nuka tututue gbɔ TSC tsona?
Nusi koŋ gbɔ wòtsoe nye domenyiŋusẽfianu ƒe tɔtrɔ . Esia dzɔna le mɔ eve dometɔ ɖeka nu:
1. Domenyiŋusẽfianu ƒe tɔtrɔ si dzɔna le eɖokui si: Le ame akpa gãtɔ gome (anɔ abe akpa eve le etɔ̃ me ene) la, womenyia TSC ƒe dome o. Edzɔna le vome le eƒe tsitsi ƒe gɔmedzedze esime vidadaa kple fofoa ƒe lãmenugbagbeviwo ƒo ƒu zi gbãtɔ tsɔ wɔa fugboe.
2. Domenyinyi tso dzilawo gbɔ: Le go siwo ade akpa etɔ̃lia me la, dzila aɖe gbɔe nɔnɔmea tsona. Ne TSC le dzila ɖeka ŋu la, mɔnukpɔkpɔ 50% li be wo vi nanyie dome.
Nukawoe nye dzesiawo? Ðe wògblẽa nu le amesiame ŋu nenema kea?
Ao, TSC ƒe dzesiwo toa vovo ŋutɔ tso ame ɖeka gbɔ yi bubu gbɔ eye woate ŋu atrɔ le ɣeyiɣi aɖe megbe. Ame aɖewo ɖea dzesiwo fiana le wo dzidzi me, evɔ ame bubuwo ya ate ŋu adze wo dzi le woƒe tsitsime. Dzesiawo nɔ te ɖe afisi dɔdzẽawo le, woƒe lolome, kple woƒe xexlẽme dzi.
Be wòakpe ɖe ŋuwò nàse egɔme la, na míalé ŋku ɖe alesi wògblẽa nu le ŋutilã ƒe akpa vovovowo ŋui ŋu.
| Ŋutilã ƒe Akpa si Ŋu Ŋusẽ Le | Dzesi Siwo Ate Ŋu Akpɔ |
|---|---|
| Ŋutigbalẽ | Esiawoe nye dzesi siwo bɔ wu. Àte ŋu akpɔ teƒe siwo ƒe amadede le keklẽm (hypopigmented macules), ʋuʋudedi dzĩ siwo le abe aklã ene le mo (mo ƒe ʋuka siwo me ʋu sina tona), ŋutigbalẽ ƒe akpa siwo le ɣie le ŋgonu, alo tsitsi suesuesue siwo ƒo xlã ɖawo. |
| Hɔhɔ̃ | Zi geɖe la, dɔdzẽ siwo le ahɔhɔ̃a me hea alɔ̃dɔdɔ vɛ. Nuwɔna ƒe tɔtrɔ (dziku enuenu, dzimaɖitsitsi), alɔ̃dɔdɔ ƒe nyawo, taɖuame, ʋuʋudedi, kple tsitsi ƒe megbetsitsi abe autism ene ate ŋu adzɔ. |
| Ayikuwo | Dɔdzẽ siwo le ayikuwo me ate ŋu agblẽ nu le woƒe dɔwɔwɔ ŋu. Esia ate ŋu ana ʋu nasɔ gbɔ alo ʋu nado le ememe. |
| Dzi | Zi geɖe la, dzitodzito me dɔdzẽ dzena le vidzĩme eye zi geɖe la, edzi ɖena kpɔtɔna ne ame tsi. Gake ɣeaɖewoɣi la, woate ŋu ana dzi ƒe tsotso ƒe masɔmasɔ (dzi ƒe tsotso ƒe dɔmawɔmawɔ nyuie) alo axe mɔ na ʋu ƒe sisi. |
| Dzitodzito | Dɔdzẽ siwo le lãkusiwo me ate ŋu ana gbɔgbɔtsixe natsi ame me le kamedede fafɛ gɔ̃ hã me. Kɔdzi alo le nɔnɔme sesẽwo me la, lãkusi si mu ate ŋu adzɔ. |
| Ŋkuwo | Ŋku ƒe dɔdzẽ ate ŋu ana ame nakpɔ nu nyuie alo akpɔ nu zi eve. |
Aleke ɖɔktawo wɔa dea dzesi dɔléle siae?
Esi wònye be dzesiwo to vovo ŋutɔ ta la, dɔlélea didi ate ŋu asesẽ ɣeaɖewoɣi. Anɔ eme be wò ɖɔkta awɔ ŋutinya tsitotsito to nyawo abe:
- Tɔtrɔ gbãtɔ kae nède dzesii, eye ɣekaɣie wòdze egɔme?
- Ðe wò alo viwòa to alɔ̃madɔmadɔ me kpɔa ? Ne nenemae la, nukae dzɔna le nudzɔdzɔ aɖe me eye ɣeyiɣi didi kae wonɔa anyi?
- Zi nenie taɖuame le ŋuwò?
- Ðe wò ƒomea me tɔ aɖe xɔ alɔ̃dɔdɔ alo TSC ƒe ŋutinyaa?
Le ema megbe la, wò ɖɔkta ado wò ŋutigbalẽ kple ŋkuwo kpɔ eye ate ŋu aɖo wò ɖe dodokpɔ bubuwo wɔwɔ me:
- CT Scan : Ezãa X-ray siwo kplɔ wo nɔewo ɖo tsɔ ɖea foto ememetɔwo tsitotsito, si kpena ɖe ame ŋu wòkpɔa dɔdzẽwo.
- MRI Scan : Enaa nɔnɔmetata siwo me kɔ wu, siwo me kɔ wu CT scan gɔ̃ hã, siwo dometɔ aɖewoe nye ahɔhɔ̃a kple tsi ƒe sisi ƒe dzedzeme. Ɣeaɖewoɣi la, wozãa amadede si to vovo na wo nɔewo be eme nakɔ nyuie wu.
- Echocardiogram: Dzia ƒe ultrasound si wotsɔ dea dzesi dɔdzẽwo kple vovototo bubu siwo le woƒe wɔwɔme me.
- Domenyiŋusẽfianu dodokpɔ: Ʋudodokpɔ si ate ŋu aɖo kpe TSC ƒe anyinɔnɔ dzi godoo.
Nukawoe nye atikewɔmɔnu siwo woate ŋu azã?
Wotrɔa asi le atikewɔwɔwo ŋu ɖe wò dzesi tɔxɛwo kple afisi dɔdzẽawo le nu. Wò atikewɔlawo ƒe ƒuƒoƒoa ƒe taɖodzinu vevitɔe nye be yewoaɖu dzesiawo dzi be wòakpe ɖe ŋuwò nànɔ agbe nyuie.
- Le ayiku gome: Woate ŋu azã atikewo (abe everolimus ene) atsɔ axe mɔ na ʋu ƒe sisi na dɔdzẽwo alo aɖe wo dzi akpɔtɔ. Amekoko ate ŋu ahiã ɣeaɖewoɣi. Le nɔnɔme sesẽwo me la, ate ŋu ahiã be woado ayiku alo ayiku dodo na ame.
- Le ahɔhɔ̃a gome: Woate ŋu atsɔ atikewo aɖe ahɔhɔ̃meka aɖewo dzi akpɔtɔ. Atike aɖewo koŋ li siwo woate ŋu azã atsɔ axe mɔ ɖe alɔ̃madɔmadɔ nu. Le go aɖewo me la, wowɔa dɔ na ame be woaɖe dɔdzẽwo ɖa. Ðeviwo ƒe alɔ̃madɔmadɔ dada kaba le vevie ŋutɔ na ahɔhɔ̃a ƒe tsitsi kple nusɔsrɔ̃ ŋutete.
- Le lãkusiwo gome la:Le ame ɖekaɖeka siwo ŋu lãkusi me kuxiwo le gome la, woate ŋu aŋlɔ dɔlélenutsiŋutete ƒe atikewo abe sirolimus ene na wo.
- Le ŋutigbalẽ gome: Woate ŋu azã laser-dɔdamɔnu alo ŋutigbalẽ ƒe ʋuʋu atsɔ ada ƒoƒoewo kple ƒuƒuwo ahawɔ wo woanɔ blɔ.
Nu vevitɔ kekeakee nye be nànɔ dze ɖom kple wò ɖɔkta faa ahawɔe edziedzi be nàtu atikewɔwɔ ƒe ɖoɖo si sɔ na wò si awɔ dɔ na wò.
Agbenɔnɔ kple TSC
Agbenɔnɔ kple nɔnɔme si nɔa anyi didi ate ŋu asesẽ na wò le seselelãme gome, gake ne èkpɔ egbɔ nyuie la, àte ŋu anɔ agbe si me dzidzeme le.
- Kpɔ nyuie le wò ŋutilã ŋu: Lé ŋku ɖe tɔtrɔ yeye ɖesiaɖe ŋu eye nàdzro wo me kple wò ɖɔkta enumake. No wò atikewo abe alesi nèɖoe ene eye mègato wò ɣeyiɣi siwo nèɖo ɖi la ŋu o.
- Dzra ɖo ɖe nɔnɔme kpatawo ŋu: Dzro nusi nàwɔ le nɔnɔme kpata aɖe me kple ɣeyiɣi si wòle be nàyi Dɔwɔƒe si Kpɔa Nudzɔdzɔ Kpatawo Gbɔ (ED) me kple wò ɖɔkta .
- Na ɖeviwo nanye ɖeviwo: Ne TSC le viwòa ŋu la, ɖo ŋku edzi be ɖevie wogakpɔtɔ nye. Na nɔnɔme si me woate ŋu aƒo fefe, asrɔ̃ nu, ahakpɔ dzidzɔ le.
- Di kpekpeɖeŋu: Gblɔ wò mɔzɔzɔa na ƒometɔwo kple xɔlɔ̃wo eye nàna woanya alesi woate ŋu ado alɔ wò nyuie wu.
- Susu ƒe nyonyo: Esɔ be ame nase le ɖokuiwò me be nu te ɖe ye dzi alo be yelé blanui ɣeaɖewoɣi. Ne èle agbagba dzem la, mègahe ɖe megbe le kpekpeɖeŋu didi tso aɖaŋuɖola alo susumedɔdala gbɔ o.
Togbɔ be womekpɔ atike aɖeke na TSC haɖe o hã la, ne wodae nyuie eye wokpɔ edzi nyuie la, ame akpa gãtɔ ate ŋu anɔ agbe si sɔ eye woanɔ agbe si me dzo le, le wo ɖokui si.
Gbedasi si Wotsɔ Yi Aƒeme
- Tuberous Sclerosis Complex (TSC) nye domenyiŋusẽfianu ƒe dɔléle si hea dɔdzẽ siwo menye kansa o vɛ le ŋutilã ƒe akpa vovovowo.
- Dzesiawo toa vovo ŋutɔ; zi geɖe la, wokpɔa ŋutigbalẽ ƒe ʋuʋu, alɔ̃madɔmadɔ, kple tsitsi ƒe megbetsitsi.
- Togbɔ be atike aɖeke meli fifia o hã la, atikewɔmɔnu nyui aɖewo li egbea siwo kpena ɖe ame ŋu wòɖua dzesiwo dzi, woɖea dɔdzẽwo dzi kpɔtɔna, eye wònana ame nɔa agbe si sɔ.
- Ne ède dzesi tɔtrɔ aɖewo siwo mebɔ o le wò ŋutilã alo viwò ƒe ŋutilã me la, yi ɖɔkta gbɔ enumake.
- Ne wokpɔ atikewɔnyawo gbɔ nyuie eye wokpɔ wo dzi nyuie la, amesiwo ŋu TSC le ƒe akpa gãtɔ ate ŋu anɔ agbe si me dzo le, le wo ɖokui si, eye woakpɔ dzidzeme.
Tuberous Sclerosis Complex, TSC, domenyiŋusẽfianu ƒe dɔléle, ahɔhɔ̃ me dɔdzẽ, alɔ̃madɔmadɔ, ŋutigbalẽ ƒe ʋuʋudedi, ayikudɔ, TSC ƒe wɔwɔfia, TSC ƒe dzesiwo
