Ðe nèse le ɖokuiwò me kpɔ be viwò suea gbɔdzɔ vie wu ɖevi bubuwo, alo be esesẽna na wo be woalé woƒe kɔ dzɔdzɔea? Alo ɖewohĩ viwò tsitsitɔ le gegem ɣesiaɣi alo atrakpui liali sesẽ nɛa? Àte ŋu abu nusiawo nye nusiwo sɔ eye nàgbe wo, gake egbea míele nu ƒom tso susu vevi aɖe si ate ŋu anɔ megbe na wo ɣeaɖewoɣi ŋu. Emae nye Spinal Muscular Atrophy , alo SMA abe alesi mí ɖɔktawo míeyɔnae ene.
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Enyo, ekema nukae nye SMA sia?
Kpuie ko la, domenyiŋusẽfianu ƒe dɔlélee nye esia. Be lãmeka siwo le míaƒe ŋutilã me nate ŋu aʋuʋu ahawɔ dɔ la, ele be gbedasi aɖe natso ahɔhɔ̃a me ayi lãmeka mawo gbɔ. Lãmetsiŋusẽ ƒe lãmenugbagbevi tɔxɛwo (motor neurons) siwo le míaƒe aklã me ye tsɔa gbedasi siawo. Ne míagblɔe tututu la, lãmeka siawoe naa sedede lãmekawo be "woaɖe wo ɖokui ɖa" eye "woakeke ɖe enu."
Le SMA me la, domenyiŋusẽfianu ƒe gbɔdzɔgbɔdzɔ aɖe nana lãmeka siawo gbɔdzɔna vivivi hekuna. Bu eŋu abe ka si tsɔa elektrikŋusẽ yia elektrikmɔ̃ aɖe gbɔ va nɔa gbegblẽm vivivi, si wɔnɛ be elektrikŋusẽ si wòate ŋu atsɔ la dzi ɖena kpɔtɔna ene. Nenema ke ne lãmekawo le gbɔdzɔgbɔdzɔm la, gbedasi siwo woɖona ɖe lãmekawo hã gbɔdzɔna. Esia wɔnɛ be lãmekaawo dzi ɖena kpɔtɔna vivivi eye ŋusẽ meganɔa wo ŋu o le wo zazã manɔmee ta. Esiae nye nusi míeyɔna be lãmekawo ƒe tsɔtsrɔ̃.
Nukawoe nye SMA ƒomevi veviwo?
SMA mekpɔa ŋusẽ ɖe amesiame dzi sɔsɔe o. Womae ɖe ƒomevi vevi geɖewo me le ƒe si me dzesiawo dze egɔme tsoe kple alesi dɔlélea nu sẽe nu. Tsitsi ƒe nu vevi siwo ɖevi ɖona le eƒe tsitsime - abe eƒe kɔ léle, anyinɔƒe, kple azɔlizɔzɔ ene - le vevie ŋutɔ le hatsotso sia me.
Be gɔmesese nanɔ bɔbɔe la, mina míalé ŋku ɖe ƒomevi siawo ŋu le kplɔ̃ dzi.
| SMA ƒomevi | Ƒe si woxɔ hafi dzesiawo dzea egɔme | Nu vevi siwo le eme kple nɔnɔme si le wo ŋu |
|---|---|---|
| Ƒomevi 0 | Do ŋgɔ na vidzidzi alo le edzidzi megbe teti | Ƒomevi si nu sẽ ŋutɔ eye mebɔ o. Zi geɖe la, ewua ame. |
| Ƒomevi 1 lia | Tso edziɣi vaseɖe ɣleti 6 | Ƒomevi si bɔ wu. Mete ŋu lé kɔa ɖe dzi o. Abɔ kple afɔwo ƒoa ƒu. Mete ŋu nɔa anyi kpekpeɖeŋu manɔmee o. Gbɔgbɔ kple nu mimi sesẽ. |
| Ƒomevi 2 lia | Le ɣleti 3 va ɖo 15 dome | Ate ŋu anɔ anyi kpekpeɖeŋu manɔmee, gake mate ŋu anɔ tsitre alo azɔ o. Gbɔdzɔgbɔdzɔ mele abɔwo me boo o wu afɔwo. Yagbɔgbɔ sesẽ ate ŋu adzɔ le alɔ̃dɔdɔ me. |
| Ƒomevi 3 lia | Le ɣleti 18 megbe va ɖo sɔhɛmenɔɣi | Ete ŋu zɔna henɔa tsitrenu le eɖokui si, gake edzea anyi enuenu, esesẽna nɛ be wòali atrakpuiwo, eye esesẽna nɛ be wòado le zikpui dzi. Le ɣeyiɣi aɖe megbe la, ate ŋu ahiã be woana kpekpeɖeŋu le bunɔkeke me. |
| Ƒomevi 4 lia | Le tsitsime (ƒe 20-30) . | Ƒomevi aɖe si mebɔ o. Lãmetsiwo ƒe gbɔdzɔgbɔdzɔ fafɛ kple gbɔgbɔtsixetsixe fafɛ ate ŋu ado mo ɖa. Dzesiawo dzena vivivi ŋutɔ. Mekpɔa ŋusẽ ɖe agbenɔƒe si wokpɔ mɔ na dzi o. |
Azɔ mina míaƒo nu tso ƒomevi siawo dometɔ ɖesiaɖe ŋu tsitotsito vie.
SMA ƒomevi 1 (Werdnig-Hoffmann ƒe dɔléle) .
Esiae nye esi bɔ wu eye wòsẽ wu. Vidzĩ siawo ɖea dzesiwo fiana hafi xɔa ɣleti 6. Zi geɖe la, dzesiawo dzea egɔme tso ɣleti 3 me ke. Esia nyea vevesese gã aɖe na vidada kple vifofo. Vidzĩa sena le eɖokui me be agbe mele ye si o. Abe lãgbalẽgolo ƒe fefenu ene. Womate ŋu alé kɔa ɖe te sesĩe o. Afɔawo le xɔxlɔ̃m ɖe anyi. Esi wònye be esesẽna be woano notsi eye woami nuɖuɖu gɔ̃ hã ta la, nunyiame ƒe gbɔdzɔgbɔdzɔ ate ŋu ado mo ɖa. Azɔ hã, lãmeka siwo kpena ɖe ame ŋu le gbɔgbɔ me la gbɔdzɔna, eyata gbɔgbɔtsixe xɔxɔ ƒe afɔkua lolo ŋutɔ. Nyateƒenya wɔnublanui lae nye be ɖevi siawo dometɔ geɖe menɔa agbe ƒe 2 o.
SMA ƒomevi 2 (Dubowitz ƒe dɔléle) .
Esia nye domedome ƒe sesẽme ƒomevi aɖe. Bu eŋu kpɔ, viwòa bɔbɔ nɔ anyi nyuie hele fefem, gake medze agbagba be yeafɔ alo azɔ hafi ɣleti 6-7 naɖo o. Esiae nye nɔnɔme ƒomevi evelia. Zi geɖe la, dzesiawo dzea egɔme hafi ɖevia te ŋu tsi tre hezɔ le eɖokui si. Ðewohĩ ŋusẽ anɔ ɖevi siawo ŋu vie le woƒe abɔwo me wu woƒe afɔwo. Gake womete ŋu tsi tre hezɔ le wo ɖokui si o. Ne wole tsitsim, ɖewohĩ le woƒe ƒewuiwo me la, woate ŋu ahiã kpekpeɖeŋu hafi woate ŋu anɔ anyi. Gbɔgbɔ hã ate ŋu asesẽ na wo ne wole alɔ̃ dɔm, eyata ele be woabu esia hã ŋu. Le alesi dzesiawo nu sẽe nu la, agbenɔƒe ate ŋu anɔ kpuie wu alesi wòle dzɔdzɔmee.
SMA ƒomevi 3 (Kugelberg-Welander ƒe dɔléle) .
Esia nye ƒomevi aɖe si me mekɔ tututu o. Dzesi sia ƒomevi dzena tso ƒe 1 1/2 (ɣleti 18) va ɖo ƒewuiwo me. Ðevi siawo te ŋu zɔna henɔa tsitrenu le wo ɖokui si. Gake kuxiae nye be wodzea anyi enuenu, esesẽna na wo be woaƒu du ahati kpo, eye esesẽna na wo ŋutɔ be woafɔ tso zikpui dzi alo alia atrakpui. Esi lãmekawo le gbɔdzɔgbɔdzɔm le ɣeyiɣi aɖe megbe la, woate ŋu ahiã bunɔkeke ƒe kpekpeɖeŋu le woƒe tsitsime. Gake nya nyuiae nye be ɖevi siawo ate ŋu anɔ agbe si sɔ.
SMA ƒomevi 4 (ame tsitsiwo ƒe SMA) .
Esia nye ƒomevi aɖe si mebɔ kura o. Dzesiawo dzea egɔme le ame tsitsi me, zi geɖe le ƒe 20 alo 30-awo me. Àte ŋu akpɔ gbɔdzɔgbɔdzɔ sue aɖe le wò abɔwo kple afɔwo ŋu, eye ɣeaɖewoɣi hã la, gbɔgbɔtsixe ate ŋu anɔ ŋuwò. Dzesi siawo doa mo ɖa vivivi ale gbegbe be ame aɖewo menya gɔ̃ hã be dɔlélea le yewo ŋu o ƒe geɖe. Mekpɔa ŋusẽ ɖe agbenɔƒe dzi o.
Ðo ŋku edzi be le nɔnɔme siawo tɔgbe me la, nu vevitɔ kekeakee nye be nànya dɔlélea kaba ale si nàte ŋui eye nàdi atikewɔlawo ƒe aɖaŋuɖoɖo nyuitɔ.
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Check Availability →Nukae nèwɔna ne èkpɔ dzesi siawo tɔgbe?
Ne èsusu be dzesi siwo woŋlɔ ɖe nyati sia me dometɔ aɖe le viwòa ŋu la, taflatse mègatsi dzodzodzoe o eye nàyi ɖɔkta bibi aɖe gbɔ enumake, vevietɔ ɖeviwo ƒe dɔdala. Mègadze agbagba be yeanɔ te ɖe internet alo nya siwo nèse dzi akpɔ dɔlélea le ye ɖokui ŋu o. Esia ate ŋu anye afɔku. Ðɔktaa ado viwòa kpɔ eye ne ehiã la, aɖo wò ɖe domenyiŋusẽfianu ƒe dodokpɔwo wɔwɔ be woatsɔ aɖo kpe nɔnɔmea ƒe nɔnɔme tututu dzi. Ne woɖo kpe dɔlélea dzi la, woana nànya nu tso edzikpɔkpɔ ƒomevi tɔxɛa, lãmesẽnyawo gbɔ kpɔkpɔ, kple atikewɔmɔnu yeyewo kple esiwo le dodom ŋu.
Gbedasi si Wotsɔ Yi Aƒeme
- Spinal Muscular Atrophy (SMA) nye dɔléle si tsoa lãmeka siwo le aklã me ƒe gbɔdzɔgbɔdzɔ gbɔ.Enye domenyiŋusẽfianu ƒe dɔléle si nana lãmekawo gblẽna.
- Wole ƒomevi vevi vovovowo me, le ƒe si me dzesiawo dze egɔme tsoe kple alesi wòsẽe nu.
- Ne ède dzesi dzesi siwo fia be viwòa le ʋuʋum, eƒe tsitsi tsi megbe, alo wòdze anyi enuenu la, mègaŋe aɖaba ƒu edzi o.
- Ele vevie ŋutɔ be woaƒo asa na ame ŋutɔ ƒe dɔlélewo didi eye woayi ɖɔkta bibi gbɔ enumake hena aɖaŋuɖoɖo nyuitɔ.
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