Ðe nède dzesi dzigbedzesi gã aɖe si ƒe amadede nye aŋutiɖiɖi, si ƒe amadede nye wein, le viwòa ƒe ŋutilã ŋu esime wodziia? Alo, ne viwòa le tsitsim la, ɖe wòdzena abe afɔ ɖeka didi eye wòlolo wu evelia enea? Àte ŋu ade dzesii hã be ʋuka siwo le tsatsam la li. Ne dzesi siawo dometɔ ɖeka alo esi wu nenema le viwòa ŋu la, ele vevie be nànya nɔnɔme si mebɔ o si ŋu míele nu ƒom tsoe egbea si woyɔna be Klippel-Trenaunay Syndrome (KTS). Togbɔ be aɖi nya sesẽ hã la, mina míana wòanɔ bɔbɔe.
Kpuie ko la, nukae nye Klippel-Trenaunay Dɔléle (KTS)?
KTS nye dɔléle si mebɔ kura o si wodzina eye wòdzɔna le vidzidzi me. Ame siwo ade ɖeka le miliɔn ɖeka me koe wògblẽa nu le le xexeame katã. Eyata mebɔ boo o. Kuxi vevi etɔ̃ li siwo woate ŋu akpɔ le amesi ŋu dɔléle sia le ŋu.
1. Dzigbedzesi dzĩ aɖe si le ŋutigbalẽ ŋu: Wogayɔa esia be ``Port-wine stain'' elabena eɖi wein sue aɖe ƒe amadede.
2. Varicose veins: Esia nye nɔnɔme si míeyɔna be ``Varicose veins''.
3. Alɔ alo afɔ ɖeka ƒe tsitsi lolo wu evelia: Afɔ ɖeka koŋ ate ŋu adidi alo alolo wu evelia.
Tsɔ kpe ɖe dzesi vevi etɔ̃ siawo ŋu la, ame aɖewo ate ŋu akpɔ kuxiwo le ʋumenugbagbeviɣidɔ hã ŋu, si kpena ɖe ame ŋu be tsi nada sɔ le míaƒe ŋutilã me.
Ðɔktawo yɔa esia ɣeaɖewoɣi be ``CLVM.'' Esia fia be nɔnɔme sia gblẽa nu le míaƒe ŋutilã ƒe akpa geɖewo ŋu.
- C (Capillaries): Esiawoe nye ʋuka nyui ŋutɔ siwo doa ka kple míaƒe ʋukawo kple ʋukawo. Tɔtrɔ siwo va le esiawo me gbɔe dzigbedzesi dzĩ ma tsona.
- L (Lymphatic system): Ema fia be lymphatic system. Míaƒe dɔlélenutsiŋutete ƒe akpa aɖe.
- V (Veins): Ema fia veins. Ʋuka siwo tsɔa ʋu yia dzime.
- M (Malformation): Esia fia be akpa aɖe metsi le mɔ si sɔ nu o.
Franseawo ƒe ɖɔkta evee ke ɖe nɔnɔme sia ŋu zi gbãtɔ le ƒe 1900. Esia tae wotsɔ woƒe ŋkɔ na dɔléle sia ɖo.
Nukae nye amesi ŋu KTS le ƒe dzesiwo?
Mina míalé ŋku ɖe alesi nɔnɔme sia kpɔa ŋusẽ ɖe amesi ŋu KTS le ƒe ʋukawo, lãkusi falɛfalɛwo, ƒuwo, kple ʋuka siwo me ʋu sina tona dzi ŋu nyuie. Be nàse dzesi siawo gɔme nyuie la, kpɔ kplɔ̃ si le ete.
| Dzesi si dzena | Numeɖeɖe bɔbɔe aɖe |
|---|---|
| Port-wine ƒe ɖiƒoƒo | Esia ate ŋu anye KTS ƒe dzesi gbãtɔ. Ʋuka suesuesue siwo le ŋutigbalẽa te ƒe vuvu gbɔe wòtsona. Eƒe amadede ate ŋu ato vovo tso pink si me kɔ dzi va ɖo wein dzĩ si do viviti dzi. Ne èle tsitsim la, teƒe sia ate ŋu ado viviti alo anɔ keklẽm ɖe edzi. Ɣeaɖewoɣi la, ʋuʋudedi suesuesuewo dona le teƒea, si ate ŋu agbã eye ʋu nado. |
| Varicose veins (ʋuka siwo me ʋu sina tona). | Nɔnɔme sia ate ŋu adze amesiame kloe si ŋu KTS le dzi. Ne kuxi siawo do mo ɖa le ʋuka siwo le ŋutigbalẽa tame la, ʋuka siwo le afɔwo me, vevietɔ le akɔta kple akɔta, ƒe amadede zua blɔ. Ɣeaɖewoɣi la, ate ŋu agblẽ nu le ʋuka siwo le ŋutilãa me goglo hã ŋu. Ne esia dzɔ la, ʋu ƒe sisi ƒe afɔku li (Deep Vein Thrombosis - DVT). |
| Abɔ alo afɔ ƒe tsitsi si mesɔ o | Zi geɖe la, alɔ alo afɔ ɖeka koe lolona wu evelia. Esia ate ŋu adze egɔme tso vidzĩme. Zi geɖe la, edzea afɔ ɖeka dzi. Afɔ ɖeka ate ŋu adidi alo akɔ wu evelia. Esia ate ŋu ana azɔlizɔzɔ kple ʋuʋu nasesẽ. |
| Lãmetsiŋusẽ ƒe kuxiwo | Ame aɖewo ate ŋu akpɔ ʋuka siwo me ʋu sina tona wu alo esiwo ƒe nɔnɔme mesɔ o. Ne esiawo mewɔa dɔ nyuie o la, woate ŋu ana ʋuka me tsi nado, ana afɔwo navuvu, alo ana akɔta, tsinyegoe, alo dɔgbo me kuxiwo nado mo ɖa. |
| Vevesese | Veawo ate ŋu avuvu alo ave wo. Ʋu ƒe sisi ƒe kuxiwo ate ŋu ana afɔwo navuvu eye woase veve. Azɔ hã, afɔ siwo lolo la ate ŋu ase le wo ɖokui me be yewole kpekpem alo anɔ veve sem. |
Nukatae nɔnɔme sia dzɔna ŋutɔŋutɔ?
Zi geɖe la, míaƒe domenyiŋusẽfianu ɖeka ƒe tɔtrɔ gbɔe KTS tsona. Ne míagblɔe tututu la, domenyiŋusẽfianu si woyɔna be PIK3CA ƒe tɔtrɔ aɖe gbɔe wòtso.
Nu vevitɔe nye be esia menye nusi ƒe dome wonyi tso vidada gbɔ yi vi gbɔ o. Domenyiŋusẽfianu ƒe tɔtrɔ sia dzɔna ɣeaɖewoɣi, susu aɖeke manɔmee. Eya ta abe dzilawo ene la, susu aɖeke meli si ta nàlé blanui alo abu fɔ ɖokuiwò ɖe esia ta o.
Ɣeaɖewoɣi la, KTS nɔa ame siwo si tɔtrɔ aɖeke mele le PIK3CA domenyiŋusẽfianu me o hã ŋu, eyata numekulawo xɔe se be domenyiŋusẽfianu ƒe tɔtrɔ bubuwo ate ŋu gbɔe wòtso.
Kuxi bubu kawoe ate ŋu ado mo ɖa le KTS ta?
Ne womekpɔ KTS dzi nyuie o la, kuxi aɖewo ate ŋu ado mo ɖa, eye ele vevie be nànya wo.
- Ʋu ƒe sisi: Ʋu ƒe sisi (DVT) ate ŋu adzɔ le afɔawo ƒe ʋuka gogloawo me. Afɔku gãtɔe nye be ne ʋu ƒe sisi sia gbã eye wòtsi ʋuka aɖe me le lãkusi me la, ate ŋu anye dɔléle si ate ŋu ade ame ƒe agbe afɔku me (Pulmonary Embolism).
- Ŋutilã me dɔlékuiwo: Dɔlékuiwo ƒe dɔléle siwo dzɔna le ŋutigbalẽa te (cellulitis) ate ŋu adzɔ.
- Vuvu: Kuxi siwo le ʋukawo me ate ŋu ana tsi naƒo ƒu ɖe ŋutilãa me eye wòana ame navuvu (Lymphedema).
- Ʋu si le dodom le ememe: Ʋu ate ŋu ado tso dɔgbo, dɔgbo, tsinyegoe, alo le nyɔnuwo gome la, vidzidzi ƒe ɖoɖoa.
Ƒã ŋutɔ la, ame aɖewo siwo ŋu KTS le hã ate ŋu akpɔ vidzidzi ƒe gbɔdzɔgbɔdzɔ siwo ku ɖe asibidɛwo alo afɔbidɛwo ŋu.
- Asibidɛ bubuwo ƒe amesinɔnɔ (Polydactyly) .
- Syndactyly (asibidɛ siwo wotsɔ ƒo ƒu ɖekae) .
Aleke ɖɔkta awɔ anya KTS nyuie?
Ðɔkta aɖe adze si dɔlélea le gbã to ŋkuléle ɖe vidzĩa ƒe ŋutilã ƒe dzedzeme ŋu me. Ne dzesi vevi etɔ̃ siwo ŋu míeƒo nu tsoe va yi dometɔ eve ya teti (dzigbedzesiwo, akpɔkplɔ ƒe ʋukawo, kple abɔ kple afɔ siwo lolo) le eme la, ke wosusui be ate ŋu anye KTS. Esi wònye be dzesi siawo dzena le vidzidzi me zi geɖe ta la, ɣeyiɣi aɖewo li siwo me woate ŋu ade dzesii hafi vidzĩa natso kɔdzi ayi aƒeme.
Ðɔktaa ate ŋu aɖe gbe be woawɔ dodokpɔ vovovowo atsɔ aɖo kpe nɔnɔme sia dzi eye wòanya nusi tututu wògblẽna le ŋutilãa ŋu.
| Dodokpɔ | Nukae nèkpɔ le esia me? |
|---|---|
| CT-dɔdamɔnu alo MRI-dɔdamɔnu | Kpɔ alesi ŋutilãa ƒe lãkusi falɛfalɛwo kple ƒuwo le, kple alesi gbegbe wòtsi le mɔ si mesɔ o nui ɖa. |
| MRA (Magnetic Resonance Angiogram) ƒe nɔnɔmetata . | Esia nye MRI-dɔdamɔnu tɔxɛ aɖe. Ete ŋu kpɔa ʋukawo kple ʋukawo ƒe nɔnɔme nyuie ŋutɔ. |
| Doppler Ultrasound ƒe Dɔwɔnu | Lé ŋku ɖe alesi ʋu sina toa ʋukawo kple ʋukawo me ŋu, eye nàkpɔe ɖa be xe mɔ alo tsi si le sisim ɖe megbe le afi aɖe hã. |
Nukawoe nye atike siwo wozãna na KTS?
Atike aɖeke meli na KTS o. Gake atikewɔwɔ geɖe li siwo ate ŋu akpe ɖe amewo ŋu woakpɔ woƒe dzesiwo kple kuxiwo gbɔ ahanɔ agbe si sɔ. Atikewɔwɔ nɔ te ɖe amea ƒe dzesiwo dzi.
| Atikewɔwɔ ƒe mɔnu | Nukae dzɔna ɖe edzi? |
|---|---|
| Ʋu ƒe ʋuʋu (Anticoagulants) . | Atike sia kpena ɖe ame ŋu be ʋu ƒe sisi ƒe afɔkua dzi ɖena kpɔtɔna. |
| Atike si nye Sirolimus | Atike sia nana ʋuka siwo mesɔ o ƒe tsitsi dzi ɖena kpɔtɔna alo tɔa wo, si wɔnɛ be dzesiwo kple kuxiwo dzi ɖena kpɔtɔna. |
| Nutete ƒe Stockings | Esiawo kpena ɖe ame ŋu be afɔwo ƒe vuvu kple vevesese dzi ɖena kpɔtɔna, eye woɖea ʋu ƒe sisi ƒe afɔkua dzi kpɔtɔna. Wokpena ɖe ʋu ŋu wòtsoa afɔwo me yia dzia me. |
| Afɔkpawo kɔklɔ | Ne wò afɔwo ƒe didime mesɔ o la, akpa si kɔkɔ wu tsɔtsɔ kpe ɖe afɔkpa ɖeka ŋu ate ŋu ana azɔlizɔzɔ nanɔ bɔbɔe. Esia kpena ɖe ame ŋu hã be woaɖe afɔku si le ʋumenugbagbeviɣidɔ me dzi akpɔtɔ. |
| Laser-dɔdamɔnu | Wozãa atikewɔwɔ sia tsɔ naa ``port-wine stain'' dzigbedzesi ƒe amadede si le ŋutigbalẽa dzi la klẽna. |
| Sclerotherapy ƒe atikewɔwɔ | Wodoa tsi tɔxɛ aɖe ɖe ʋuka siwo me kuxi le la me, si wɔnɛ be womegawɔa dɔ o eye wòxea wo nu. Esia nye atike nyui aɖe na ʋuka siwo me ʋu sina tona. |
| Amekoko | Woate ŋu awɔ amekoko atsɔ aɖɔ ʋuka me kuxi gãwo ɖo, ana afɔ ƒe didime nasɔ, alo aɖe alɔ/afɔ si lolo ƒe lolome dzi akpɔtɔ to lãkusi siwo sɔ gbɔ ɖe eme ɖeɖeɖa me. |
Nukawoe nye nusiwo ŋu wòle be woaɖɔ ŋu ɖo etɔxɛe ne wole agbe kple KTS?
Ne èle agbe kple KTS la, ele vevie ŋutɔ be nàse wò ŋutilã gɔme nyuie eye nàkpɔ nu aɖewo gbɔ.
- Lé be na wò ŋutigbalẽ nyuie: Ne èna wò ŋutigbalẽ nanɔ dzadzɛ eye abi aɖeke mele eŋu o la, ate ŋu aɖe ŋutigbalẽ ƒe dɔlékuiwo xɔxɔ ƒe afɔkua dzi akpɔtɔ.
- Nɔ dɔ dzi alesi nàte ŋui: Mèganɔ nɔnɔme ɖeka me ɣeyiɣi didi akpa o. Kamedede kple azɔlizɔzɔ edziedzi ate ŋu aɖe ʋu ƒe sisi ƒe afɔkua dzi akpɔtɔ.
- Do awu siwo wotsɔna ƒoa ʋu abe alesi wò ɖɔkta gblɔe ene: Ne wò ɖɔkta gblɔe na wò la, do sox alo awu tɔxɛ siwo ɖea abi dzi kpɔtɔna ɣesiaɣi.
- Ƒo asa na mɔxexeɖefufɔfɔnu ƒe mɔnu aɖewo: Ƒo nu kple wò ɖɔkta tso alesi nàƒo asa na nuwo abe vidzidzinutsitike siwo me lãmetsi si nye estrogen le ene ŋu, elabena wodzia ʋu ƒe sisi ƒe afɔkua ɖe edzi.
- Le fufɔɣi kple do ŋgɔ na amekoko: Le ɣeyiɣi siawo me la, ate ŋu ahiã be nàno atike siwo naa ʋu nate ŋu axe mɔ na ʋu ƒe sisi o, elabena ʋu ƒe sisi ƒe afɔkua lolo wu. Ðo dze kple wò ɖɔkta tso esia ŋu eye nàxɔ aɖaŋuɖoɖo.
Ɣekaɣie wòle be makpɔ ɖɔkta? Ɣeyiɣi kawoe wòle be woayi ETU?
Ele vevie be amesi ŋu KTS le nadoe kpɔ edziedzi le eƒe agbemeŋkekewo katã me. Esiae nye ɣeyiɣi si me woate ŋu alé ŋku ɖe nɔnɔmea ŋu, woate ŋu akpɔe be atikewɔwɔa le dɔ wɔm, eye woate ŋu awɔ tɔtrɔ ɖesiaɖe si hiã.
Gake ɣeaɖewoɣi la, ahiã be nàyi kɔdzi le nɔnɔme kpata aɖe me. Nya nu tso dzesi siawo ŋu.
Esiawoe nye nɔnɔme siwo me wòhiã be nàyi ETU (Emergency Treatment Unit) kpata:
* Ne ède dzesi ʋu ƒe sisi ƒe dzesiwo: Ne kasia afɔ ɖeka va le veve sem, vuvu, biã, eye wòse le eɖokui me be exɔ dzo ne èka asi eŋu la, ate ŋu anye vein thrombosis (DVT).
* Ne ʋu ƒe sisi le lãkusi me ƒe dzesiwo le ŋuwò: Akɔtave kpata, gbɔgbɔ sesẽ, gbɔgbɔ kabakaba, alo ʋu si le ƒoƒom la, ate ŋu anye aklã me ʋu ƒe sisi. Esia nye nudzɔdzɔ kpata aɖe.
* Ne ʋu le dodom vevie: Ne ʋu si dzi womate ŋu aɖu o le dodom tso ŋutilã ƒe akpa aɖeke.
Ne èkpɔ dzesi siawo dometɔ aɖe la, mègagblẽ ɣeyiɣi o eye nàyi kɔdzi si te ɖe ŋuwò ƒe Dɔwɔƒe si Kpɔa Nudzɔdzɔ Kpatawo Gbɔ (ETU) enumake.
KTS nye nɔnɔme sesẽ aɖe, eyata nyabiase geɖe ate ŋu anɔ asiwò. Ɣesiaɣi si nàkpɔ wò ɖɔkta la, ɖo to nusianu si le susu me na wò. Mègasusu be, "Kuxi aɖe koe nye esia si mehiã be makpɔ egbɔ o." Anyo wu be nàgblɔe faa ahaɖi anukware na wò ɖɔkta.
Gbedasi si Wotsɔ Yi Aƒeme
- Klippel-Trenaunay Dɔléle (KTS) nye vidzidzi ƒe gbɔdzɔgbɔdzɔ si mebɔ o si menye dzilawo ƒe vodada aɖeke gbɔe wòtso o.
- Dzesi vevi etɔ̃awoe nye: dzigbedzesi dzĩ dzẽ (port-wine stain), ʋuka siwo me ʋu sina tona, kple alɔ alo afɔ ɖeka lolo wu evelia.
- Togbɔ be womate ŋu ada nɔnɔme sia keŋkeŋ o hã la, atikewɔmɔnu geɖewo li siwo ate ŋu akpe ɖe ŋuwò nàɖu wò dzesiwo dzi ahanɔ agbe nyui ŋutɔ.
- Kuxi vevitɔ kekeake siwo ŋu wòle be woalé ŋku ɖoe nye ʋu ƒe sisi (DVT, Pulmonary Embolism) kple ʋu si dona fũu akpa. Lé ŋku ɖe nusiawo ƒe nuxlɔ̃amedzesiwo ŋu ɣesiaɣi.
- Ele vevie ŋutɔ be nànɔ kadodo me kple wò ɖɔkta le wò agbemeŋkekewo katã me eye nànɔ dodokpɔ wɔm edziedzi.
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