Ðe viwò ƒe lãmekawo gbɔdzɔa? - Srɔ̃ nu tso Lãmetsiŋusẽ ƒe Dɔléle ŋu

Ðe viwòa dzea anyi enuenua? Alo ɖe wòsesẽna nɛ be wòafɔ, alia atrakpui, aƒu du, alo ati kpoa? Ɣeaɖewoɣi la, nusiawo nyea nusiwo sɔ siwo dzɔna ɖe ɖevi suewo dzi ne wole tsitsim. Gake ɣeaɖewoɣi la, kuxi aɖe ate ŋu anɔ lãmeka siwo le megbe na wo ŋu si hiã be woalé ŋku ɖe wo ŋu. Esia tae míele nu ƒom tso dɔlélewo ƒe ƒuƒoƒo aɖe si nana lãmekawo gbɔdzɔna vivivi ŋu.

Nukae Nye Lãmetsiŋusẽ ƒe Dɔléle?

Kpuie ko la, lãmekawo ƒe dɔmawɔmawɔ nyuie nye ŋkɔ si wozãna na dɔlélewo ƒe ƒuƒoƒo aɖe si gbɔdzɔa míaƒe ŋutilã ƒe lãmekawo le ɣeyiɣi aɖe megbe eye wòɖea woƒe asitɔtrɔ le nɔnɔmewo ŋu dzi kpɔtɔna. Nusi koŋ gbɔ esia tsonae nye domenyiŋusẽfianu siwo kpena ɖe míaƒe lãmekawo ŋu be woanɔ lãmesẽ me ƒe gbɔdzɔgbɔdzɔ .

Ame aɖewo ate ŋu axɔ dɔlélea le woƒe ɖevime, gake ame bubuwo ya maɖe dzesi aɖeke afia o vaseɖe esime woxɔ ƒe ewo alo wuiatɔ̃, alo va ɖo tsitsime gɔ̃ hã.

Alesi dɔléle sia gblẽa nu le ame ɖesiaɖe ŋu la to vovo. Enɔ te ɖe dɔlélea ƒomevi dzi. Le ame geɖe gome la, nɔnɔmea ate ŋu agblẽ ɖe edzi vivivi le ɣeyiɣi aɖe megbe. Ame aɖewo gɔ̃ hã ate ŋu abu azɔlizɔzɔ alo nuƒoƒo ƒe ŋutete. Gake esia medzɔna ɖe amesiame dzi o . Ame aɖewo nɔa agbe si sɔ ƒe geɖe eye dzesi siwo nu mesẽna o nɔa wo ŋu. Eyata mehiã be nàtsi dzodzodzoe do ŋgɔ o.

Nukawoe nye esia ƒomevi veviwo?

Lãmetsiŋusẽ ƒe dɔmawɔmawɔ nyuie ƒomevi siwo wu 30 ye li. Gake ƒomevi vevi 9 li siwo míekpɔna zi geɖe. Ƒomevi ɖesiaɖe to vovo le domenyiŋusẽfianu si hea dɔlélea vɛ, lãmeka siwo ŋu dɔlélea le, ƒe si me dzesiawo dzea egɔme tsoe, kple alesi dɔlélea le ŋgɔ yim kabakabae gome.

Nukatae dɔléle sia ƒomevi dzɔna? (Nu siwo gbɔ wòtso) .

Woate ŋu anyi dɔléle sia ƒe dome, alo ate ŋu adze wò alo viwòa dzi gbã evɔ wò ƒomea me tɔ aɖeke maxɔe o. Domenyiŋusẽfianu ƒe gbɔdzɔgbɔdzɔ aɖe gbɔe esia tsona .

Bu eŋu kpɔ, domenyiŋusẽfianu siawo fiaa mɔ lãmenugbagbevi siwo le míaƒe ŋutilã me be woawɔ protein siwo hiã be woatsɔ awɔ dɔ vovovowoe. Ele abe nuɖuɖu ƒe nuɖaɖa ene. Ne domenyiŋusẽfianu aɖe gblẽ la, lãmenugbagbeviawo ate ŋu awɔ protein si mesɔ o, protein si mesɔ gbɔ o wu esi hiã, alo protein si gblẽ.

Domenyiŋusẽfianu siwo wɔa protein siwo nana lãmekawo nɔa lãmesẽ me hesẽa ŋu la gblẽna le amesiwo ŋu lãmekawo ƒe dɔmawɔmawɔ nyuie le ŋu. Le kpɔɖeŋu me, le Duchenne kple Becker gome la, protein si woyɔna be dystrophin la , womewɔa nu boo aɖeke kura o. Dystrophin protein sia doa ŋusẽ lãmekawo eye wòkpɔa wo ta tso nusiwo agblẽ le wo ŋu me. Ne protein sia bu la, lãmekawo gblẽna bɔbɔe eye wogbɔdzɔna.

Aleke woawɔ ade dzesii? (Dɔléle dzesi)

Nɔnɔmea ƒomevi geɖe ƒe dzesiwo dzea egɔme dzena le ɖevime alo ƒewuiwo me. Zi geɖe la, ɖevi si ŋu dɔléle sia le ate ŋu aɖe dzesi siwo gbɔna afia:

• Anyidzedze enuenu
• Gbɔdzɔgbɔdzɔ ƒe seselelãme le lãmekawo me
• Lãmetsiwo ƒe ʋuʋu
• Esesẽna be woafɔ tso anyinɔƒe, atrakpui lialia, duƒuƒu, alo titri
• Azɔlizɔzɔ le afɔkpodzi alo afɔdzidede

Tsɔ kpe ɖe eŋu la, ame aɖewo hã ate ŋu akpɔ dzesiwo abe:

• Scoliosis ƒe dɔléle
• Ŋku ƒe ʋuʋudedi si le gegem ɖe anyi
• Dzi ƒe kuxiwo
• Gbɔgbɔ alo nuɖuɖu mimi sesẽ
• Nukpɔkpɔ ƒe kuxiwo
• Mo ƒe lãmekawo ƒe gbɔdzɔgbɔdzɔ

Aleke ɖɔktaa ɖo kpe esia dzii? (Dɔléle ƒe dzesi) .

Ðɔktaa awɔ dodokpɔ geɖe atsɔ anya ne lãmekawo gbɔdzɔ le viwòa ŋu. Gbã la, woawɔ ŋutilãmedɔdada bliboa, abia wò ƒomea ƒe atikewɔwɔ ŋutinya, eye woabia viwòa ƒe dzesiwo hã.

Le ema megbe la, woate ŋu awɔ dodokpɔ geɖe abe esiawo ene be woaɖe nɔnɔme bubu siwo ate ŋu ana lãmekawo nagbɔdzɔ eye woakpɔ dɔlélea godoo.

Nukawoe nye atikewɔmɔnuawo?

Fifia la, womekpɔ atike aɖeke na lãmekawo ƒe dɔmawɔmawɔ nyuie o. Gake atikewɔmɔnu geɖe li siwo ate ŋu akpe ɖe viwòa ŋu wòaɖu dzesiawo dzi, ana agbea nanɔ bɔbɔe, eye wòana viwòa nakpɔ agbe nyuitɔ kekeake. Wò ɖɔkta aɖo aɖaŋu na wò be nàzã atike si sɔ wu le nɔnɔme si ƒomevi le viwòa ŋu nu.

• Lãmesẽfefewɔwɔ: Kamedede kple kekeɖenudɔwɔwɔ vovovowo kpena ɖe ame ŋu be lãmekawo nasẽ eye woate ŋu atrɔ ɖe nɔnɔmewo ŋu.
• Dɔwɔwɔ ƒe atikewɔwɔ:Wofiaa alesi wòawɔ gbesiagbedɔwo (e.g., awudodo, nuŋɔŋlɔ) ɖevia le woƒe ŋutete nu. Wofiaa alesi woazã mɔ̃wo abe bunɔkeke kple atikplɔ ene hã wo.
• Nuƒoƒo ƒe atikewɔwɔ: Ne nuƒoƒo sesẽ na wò le wò mo alo ŋɔti ƒe lãmekawo ƒe gbɔdzɔgbɔdzɔ ta la, míafia mɔ bɔbɔe siwo dzi nàto awɔe wò.
• Atikewo:
• Atike tɔxɛwo, abe `Eteplirsen (Exondys 51)`, siwo dzia dystrophin wɔwɔ ɖe edzi na DMD ƒomevi aɖewo.
• Atike siwo ɖea lãmekawo ƒe ʋuʋu dzi kpɔtɔna.
• Ʋu ƒe sisi ƒe atikewo na dzidɔ.
• Steroids abe `Prednisone` ateŋu ana lãmekawo ƒe gbegblẽ nagbɔdzɔ. Gake esiawo gblẽa nu le ame ŋu eye ɖɔkta ƒe aɖaŋuɖoɖo ko hafi wòle be woazã wo .
• Amekoko: Ðewohĩ ahiã be woawɔ dɔ na ame le kuxiwo abe aklã ƒe ʋuʋu kple dzitodzito me kuxiwo ene ta.

Nusiwo ŋu wòle be woabu ne wole ɖevi dzi kpɔm

Enye nusi sɔ be dzilawo nalé blanui ne wo vi ƒe ŋusẽ dzi ɖe kpɔtɔ vivivi eye mete ŋu ƒua du hefea fefe abe ɖevi bubuwo ene o. Gake àte ŋu akpe ɖe viwòa ŋu wòanɔ agbe le dzidzɔ me togbɔ be kuxi sia li hã.

• Na nunyiame nyui: Nuɖuɖu si da sɔ kpena ɖe viwòa ŋu be eƒe kpekpeme nanɔ lãmesẽ me. Esia ate ŋu aɖe nuwo abe gbɔgbɔtsixetsixe ene dzi akpɔtɔ.
• Nɔ dɔ dzi: Kamedede siwo mewɔa dɔ boo o abe tsiƒuƒu ene ate ŋu akpe ɖe ŋuwò nàdo ŋusẽ lãmekawo. Bia wò ŋutilãmedɔdala tso esia ŋu.
• Zã kpekpeɖeŋunu siwo akpe ɖe viwòa ŋu: De dzi ƒo na viwòa be wòazã bunɔkeke, atizɔti, kple bubuawo ne ehiã.
• Lé sesẽ: Ƒo nu kple ƒometɔwo, xɔlɔ̃wo, alo aɖaŋuɖola aɖe tso nuteɖeamedzi, blanuiléle, kple dziku si nèle sesem le ɖokuiwò me le mɔzɔzɔ sia me ŋu. Azɔ hã, kpekpeɖeŋunahawo kple ɖevi siwo ŋu dɔléle sia le dzila bubuwo ate ŋu anye ŋusẽtsoƒe gã aɖe.

Dɔléle sia medzea amesiame dzi sɔsɔe o. Ðevi aɖewo ƒe lãmekawo megasẽna kabakaba ŋutɔ. Ame bubuwo ate ŋu abui kaba wu. Eya ta ele vevie be nàƒo nu kple viwòa ƒe ɖɔkta faa tso eƒe nɔnɔmea ŋu eye nàwɔ atikewɔwɔ ƒe ɖoɖo si asɔ nɛ wu.