Ède dzesii kpɔ be viwò ƒe afɔ ɖeka didi vie wu eveliaa? Alo ɖe wòdzena abe woƒe mo ƒe akpa ɖeka lolo wu evelia enea? Ɣeaɖewoɣi la, nusiawo ate ŋu asɔ. Gake nɔnɔme aɖe si mebɔ o ate ŋu anɔ ɖevi aɖewo ŋu si me woƒe ŋutilã ƒe akpa aɖewo lolo le mɔ si mesɔ o nu. Egbea míele nu ƒom tso nɔnɔme sia tɔgbe ƒe VIÐEWO ŋu. Mègavɔ̃ be yeakpɔ esia o, nu vevitɔe nye be nàse egɔme.
Kpuie ko la, nukawoe nye NUNYA siawo?
PROS ate ŋu aɖi nya sesẽ vie. Eƒe ŋkɔ bliboae nye
PIK3CA-Related Overgrowth Spectrum . Kpuie ko la, PROS menye dɔléle ɖeka ko o. Enye nɔnɔme siwo mebɔ o, siwo do ƒome kple wo nɔewo ƒe ƒuƒoƒo si nana ŋutilã ƒe akpa aɖewo tsina akpa alo tsina le mɔ si mesɔ o nu. Abe alesi amadede geɖe le dziŋgɔli me ene la, nɔnɔme vovovo geɖewo le PROS ƒe akɔtakpoxɔnu te. Nu ɖeka si sɔ kple nɔnɔme siawo katã enye be domenyiŋusẽfianu si woyɔna be `PIK3CA` ƒe tɔtrɔ le ŋutilã me gbɔe wotso. Esia
menye ame aɖe ƒe vodada o . Esia nye domenyiŋusẽfianu ƒe tɔtrɔ le vome si dzɔna le vidzĩa ƒe fufɔfɔ megbe le vidzidɔa me.
Nu vevitɔe nye be amesiame si si PROS le la to vovo. Ðewohĩ ɖevi ɖeka ƒe dzesiwo masɔ kple bubu tɔ o. Eyata viwòa ƒe nɔnɔmea le etɔxɛ.
Nɔnɔme geɖe li siwo bɔ siwo wokpɔna zi geɖe le PROS nɔnɔmewo me. Na míalé ŋku ɖe nusiwo wonye ŋu.
| Dzesi si dzena | Numeɖeɖe bɔbɔe aɖe |
|---|
| Ŋutilã ƒe akpa aɖewo ƒe lolome | Ŋutilã ƒe akpa ɖeka alo esi wu nenema, abe alɔ, afɔ, alo asibidɛ ene ƒe lolome si mesɔ o. |
| Ahɔhɔ̃ ƒe tɔtrɔ | Ðevi aɖewo ƒe ahɔhɔ̃ alo ahɔhɔ̃ ƒe afã lolo. |
| Ami ƒe ƒuƒoƒo | Ami ƒe wɔwɔme le ŋutilã ƒe akpa vovovowo, vevietɔ le teƒewo abe ƒodo ene. |
| Tɔtrɔ siwo vaa ƒuwo me | Nɔnɔmewo abe ƒu ƒe dɔmawɔmawɔ nyuie kple ƒumeŋuɖui ene. |
| Tɔtrɔ siwo vaa asibidɛwo me | Asibidɛ alo afɔbidɛ siwo didi, siwo lolo, alo esiwo wotsɔ tsaka le mɔ si mesɔ o nu. |
| Ŋutilã ƒe teƒeteƒewo | Teƒe dovivitiwo le ŋutigbalẽa ŋu alo teƒe siwo le ƒuƒlu le teƒe aɖewo. |
| Ʋukawo me kuxiwo | Ʋukawo ƒe tsitsi si mesɔ o (ʋukawo ƒe dɔmawɔmawɔ nyuie), si ate ŋu ana ʋu ƒe sisi ƒe afɔkua nadzi ɖe edzi. |
| Nɔnɔme bubuwo | Lãmetsiwo ƒe ɖiɖi, alɔ̃madɔmadɔ, kple nusɔsrɔ̃ alo susu ƒe tsitsi ƒe megbetsitsi. |
PROS ƒomevi vovovowo kple woƒe nɔnɔmewo
Ðɔktawo nɔa te ɖe dzesi siwo ɖevia ɖena fiana dzi daa PROS nɔnɔmewo ɖe hatsotsowo me. Mina míalé ŋku ɖe ƒomevi vevi aɖewo kple woƒe nɔnɔmewo ŋu.
CLOVES ƒe dɔlélea
Ðevi siwo ŋu dɔléle sia le ate ŋu akpɔ ʋukawo ƒe tɔtrɔ si adze abe teƒe ɣiwo ene le ŋutigbalẽ ŋu kple asibidɛ siwo mesɔ o le wo dzidzi me.
CLOVES ƒe dɔlélea ƒe dzesi bubuwo
| Nuku siwo me ami le | Dɔdzẽ siwo wotsɔ ami wɔe ƒe wɔwɔme le ŋutilã me. |
| Ŋutilã ƒe tɔtrɔ | Ŋutilã ƒe teƒeteƒewo alo ŋutigbalẽ ƒe tsitsi. |
| Ƒuwo trɔna | Nɔnɔmewo abe scoliosis ene. |
| Tɔtrɔ siwo vaa abɔ kple afɔwo me | Asibidɛ siwo lolo, abɔwo ƒe tsitsi si mesɔ o. |
| Ayiku me kuxiwo | Ayiku ɖeka bu alo le sue. |
Nɔnɔme sia gblẽa nu le ahɔhɔ̃a kple ŋutilã ƒe akpa bubu geɖewo ŋu. Wodzia ɖevi geɖe siwo ŋu MCAP le kple ta gã si mebɔ o. Ta la te ŋu tsina kabakaba le eƒe agbenɔƒe gbãtɔ me.
MCAP ƒe dɔlélea ƒe dzesiwo
| Ahɔhɔ̃ ƒe lolome | Ahɔhɔ̃ bliboa alo ahɔhɔ̃a ƒe afã ɖeka ƒe lolome. |
| Mo ƒe tɔtrɔ | Ŋgonu kple nuyiwo yɔ fũ. |
| Ŋutilã ƒe amadede ƒe tɔtrɔ | Tɔtrɔ siwo vaa ŋutigbalẽa ƒe dzedzeme me (vevietɔ le mo) le tɔtrɔ siwo vaa ʋuka suewo (capillaries) me ta. |
| Lãmetsiwo ƒe gbɔdzɔgbɔdzɔ | Ŋutilã ƒe lãmekawo ƒe sesẽ dzi ɖe kpɔtɔ. |
| Nɔnɔme bubuwo | Alɔ̃madɔmadɔ, susu ƒe dɔmawɔmawɔ nyuie, nuƒoƒo ƒe megbetsitsi, asibidɛwo ƒoƒo alo asibidɛ bubuwo ƒe amesinɔnɔ, ƒunukpeƒewo ƒe bɔbɔ fũ akpa, kple dzi ƒe tɔtrɔ. |
Hemimegalencephaly ƒe dɔléle
Ahɔhɔ̃a ƒe akpa ɖeka koŋue nɔnɔme sia gblẽa nu le. Ate ŋu adzɔ le eɖokui si alo kple dɔléle bubuwo.
Dzesi veviwo: tɔtrɔ le ahɔhɔ̃a ƒe akpa ɖeka, ta si lolo eye mesɔ o, alɔ̃madɔmadɔ , ŋutilã ƒe akpa ɖeka ƒe lãmetutudɔ, kple tsitsi ƒe megbetsitsi.
Lipomatosis si gena ɖe mo me
Nusi koŋ ɖe dzesi le esia ŋue nye be mo ƒe akpa ɖeka lolo wu evelia.
Dzesi bubuwo: dɔdzẽ siwo menye kansa o siwo dzɔna le lãmekawo me (vevietɔ le aɖe alo nuyiwo dzi), aɖe si lolo, mo ƒe ƒuwo lolo , kple aɖu siwo nɔa anyi ɖaa ƒe dodo kaba.
Aleke woawɔ akpɔ nɔnɔme sia gbɔe?
NUSIWO nyo wu ate ŋu agblẽ ɖe edzi le ɣeyiɣi aɖe megbe. Le ŋutilã ƒe akpa siwo ŋu wògblẽ nu le nu la, azɔlizɔzɔ kple gbesiagbedɔwo wɔwɔ ate ŋu asesẽ na viwòa. Gake
nya nyuiae nye be atikewɔmɔnu aɖewo li siwo ate ŋu akpe ɖe viwòa ŋu wòakpɔ dɔlélea gbɔ eye wòana viwòa ƒe agbenɔnɔ nanɔ bɔbɔe. Esia menye nusi gbɔ wòle be wò ɖeka nànɔ te ɖo o. Ele vevie be nàwɔ dɔ kple viwò ƒe
ɖɔkta kple eŋutinunyala bibi bubuwo (le kpɔɖeŋu me, ƒuŋutinunyala bibi, ahɔhɔ̃ŋutinunyala) be nàdzro atikewɔmɔnu siwo nyo na viwòa me ahase wo gɔme. Ɣeaɖewoɣi la, woate ŋu akpɔ dzesiawo gbɔ to nuwo abe amekoko, atikewo zazã, alo ŋutilãmedɔdada ene me.
Gbedasi si Wotsɔ Yi Aƒeme
- PROS menye dɔléle ɖeka ko o, ke boŋ enye nɔnɔme geɖe siwo mebɔ o siwo me ŋutilã ƒe akpa aɖewo tsina le mɔ si mesɔ o nu la ƒe ƒuƒoƒo.
- Nɔnɔme sia dzɔna le domenyiŋusẽfianu ƒe tɔtrɔ gbɔ, ke menye to dzilawo ƒe vodada aɖeke me o.
- Ðevi ɖesiaɖe si ŋu PROS le la to vovo. Dzesiawo ate ŋu ato vovo ŋutɔ tso ɖevi ɖeka gbɔ yi bubu gbɔ.
- Ne ède dzesii be viwòa ƒe ŋutilã ƒe akpa aɖe mesɔ o, tsitsi si mesɔ o, alo nu bubu aɖe si ŋu ɖikeke le la, ƒo nu kple wò ɖɔkta enumake .
- Togbɔ be womate ŋu ada dɔléle sia keŋkeŋ o hã la, atikewɔmɔnu aɖewo li siwo ate ŋu akpe ɖe ɖevia ŋu wòaɖu dzesiawo dzi eye wòana ɖevia ƒe agbenɔnɔ nanyo ɖe edzi .
PROS, PIK3CA, tsitsi fũ ƒe dɔléle, CLOVES ƒe dɔléle, MCAP, ɖeviwo ƒe dɔlélewo, domenyiŋusẽfianu ƒe dɔlélewo
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