Ðe nèle veve sema? Ðe wò abɔwo kple afɔwo le ʋuʋum? Esia ate ŋu anye Inclusion Body Myositis (IBM)!

Ðe wòsena le ɖokuiwò me ɣeaɖewoɣi be nuwo léle, abɔta ƒoƒo, alo azɔlizɔzɔ gɔ̃ hã sesẽna na yea? Ðewohĩ ànɔ eŋu bum be, "Oo, nusi dzɔna ne ètsi koe nye esia." Gake ɣeaɖewoɣi la, nu siawo menɔa bɔbɔe nenema gbegbe o. Egbea, míele nu ƒom tso nɔnɔme aɖe si mebɔ o gake wòle vevie ŋutɔ si ŋu wòle be míanya nu tsoe ŋu. Woyɔa ema be `Inclusion Body Myositis`, si woyɔna hã be `(IBM)` kpuie.

Nukae nye `Inclusion Body Myositis (IBM)`? Mina míase egɔme bɔbɔe!

Kpuie ko la, `Inclusion Body Myositis` nye nɔnɔme si gbɔdzɔa wò lãmekawo vivivi, gake mehea vevesese boo aɖeke vɛ o. Zi geɖe la, edzea egɔme le ƒe 50 xɔxɔ megbe.Bu eŋu kpɔ, ate ŋu asesẽ na wò be `wòaƒo` nu sue aɖe, asesẽ na wò be `wòalé` nane, alo akli nu gɔ̃ hã adze anyi ne èzɔ ko. Esiawoe nye dzesi gbãtɔ siwo nàte ŋu ade dzesii.

Nɔnɔme sia, si woyɔna be `IBM`, doa mo ɖa vivivi le ƒe geɖe me. Menye nɔnɔme si ate ŋu ade ame ƒe agbe afɔku me o. Esia fia be mawu wò o. Gake le ɣeyiɣi aɖe megbe la, ate ŋu ana gbesiagbedɔwo wɔwɔ nasesẽ, si ate ŋu ana ame nazu nuwɔametɔ vaseɖe afi aɖe. Ɣeaɖewoɣi la, wò ŋutilã ƒe akpa ɖeka koe wògblẽa nu le wu. Ame siwo ŋu dɔléle sia le ƒe afã lɔƒo hã ate ŋu akpɔ `mimimi sesẽ`.

Nublanuitɔe la, womekpɔ atike aɖeke na IBM haɖe o. Gake mègatsi dzi o! Lãmesẽfefewɔwɔ ate ŋu akpe ɖe ŋuwò nàlé wò lãmekawo ƒe ŋusẽ me ɖe asi ɣeyiɣi didi si nàte ŋui.

Aleke gbegbee `IBM` ƒe nɔnɔme sia bɔe?

Nusiwo wotsɔ dea eme Ŋutilã ƒe Myositis nye nɔnɔme si le dɔléle siwo nana lãmekawo gbɔdzɔna siwo woyɔna be myopathies ƒe ƒuƒoƒo aɖe me. Myopathies nye dɔléle siwo dzea wò lãmekawo dzi eye wogbɔdzɔna. Numekukuwo ɖee fia be IBM gblẽa nu le ame tsitsi miliɔn ɖesiaɖe dometɔ 5 va ɖo 9 ŋu. Ebɔ ɖe ŋutsuwo hã me abe zi gbɔ zi etɔ̃ ene wu nyɔnuwo (3:1).

Nukae nye `Inclusion Body Myositis (IBM)` ƒe dzesiwo? Mina míakpɔe ɖa pɛpɛpɛ!

Lãmetsiwo ƒe gbɔdzɔgbɔdzɔ si IBM hena vɛ la va blewu ŋutɔ. Zi geɖe la, edzea egɔme tso abɔ kple afɔwo dzi. Àte ŋu ade dzesi gbɔdzɔgbɔdzɔ le wò afɔwo, ata, alo asiwo, asibidɛwo, alo asibidɛwo ŋu gbã. Bu eŋu ale: esesẽna na ame aɖewo be woaƒo awudziwui ƒe abɔta, alo woƒe nuŋlɔtiwo meŋlɔa nu nyuie o. Esesẽna na ame bubuwo be woali atrakpui, alo wokli nu hedze anyi esime wole zɔzɔm ko.

Ne dzesiawo le sesẽm ɖe edzi vivivi la, àte ŋu ade dzesi nuwo abe:

• Lãmetsi siwo le abɔwo, afɔwo, abɔta, akɔta, asibidɛwo, kple asibidɛwo me va nɔa gbɔdzɔgbɔdzɔm vivivi. Bu eŋu kpɔ, màte ŋu akɔ nu siwo nète ŋu kɔ bɔbɔe tsã o, eye wòsesẽna na wò be nàfɔ tso zikpui dzi.
• Lãmetsi siwo le kɔ alo nuɖuɖutome ƒe gbɔdzɔgbɔdzɔ. Esia ate ŋu ana wòasesẽ be woalé ta ɖe tsitrenu, ana nuɖuɖu mimi nasesẽ, eye ate ŋu ana nuɖuɖu natsi gɔ̃ hã.
• Lãmetsiwo ƒe gbagbã dzena nyuie. Esia fia be lãmekawo dzi ɖe kpɔtɔ eye wova le tsɛ ŋutɔ.
• Lãmetsiwo ƒe vevesese fafɛ, enuenu (`myalgia`). Ke hã, vevesese sia medzɔna ɖe ame sia ame dzi o, eye ne edzɔ hã la, mesẽna boo o.

Le kpɔɖeŋu me, tsɔe be xɔ̃wò aɖe si ŋkɔe nye Sunil le asiwò. Mete ŋu lé eƒe tiikplua nyuie o hena ɣeyiɣi aɖe fifia, enɔa ʋuʋum le esi. Ne eyi nyadzɔdzɔgbalẽa xlẽ ge la, eƒe asi se le eɖokui me abe ɖe wòle ʋuʋum ene. Gbã la, esusu be ɖeɖiteameŋu koe wònye. Gake emegbe la, ekpɔe be esia ateŋu anye `IBM` ƒe dzesi gbãtɔ.

Nukatae `Inclusion Body Myositis (IBM)` sia dzɔna? Nuka gbɔe wòtso?

Le nyateƒe me la, nɔnɔme sia si woyɔna be `Inclusion Body Myositis` nye `idiopathic`. Eyae nye be edze abe edzɔna nusi gbɔ wòtso koŋ manɔmee ene. Abe `myositis` ƒomevi bubuwo ene la, le go sia me la, lãmekawo ƒe dɔléle si nɔa anyi didi (`dɔdzẽ si nɔa anyi didi`) ye nye nu vevitɔ si gbɔ lãmekawo ƒe gbɔdzɔgbɔdzɔ tsona. Gake numekulawo menya nusita tututu dɔdzẽ sia dzɔna haɖe o. Wosusu be ate ŋu atso dɔlélenutsiŋutete ƒe kuxi aɖe gbɔ (`autoimmune disease`) . Eyae nye be lãmenugbagbevi siwo kpɔa míaƒe ŋutilã ta la dzea mía ŋutɔwo ƒe lãmekawo dzi vodadatɔe.

`Inclusion bodies` hã do ƒome kple `IBM`. Esiawo nye protein ƒe ƒuƒoƒo siwo mesɔ o siwo woda ɖe lãmekawo ƒe lãmenugbagbeviwo me. Woate ŋu atso dɔlékui aɖe ƒe dɔléle, lãmenugbagbeviwo ƒe gbegblẽ, alo domenyiŋusẽfianu ƒe tɔtrɔ gbɔ . Wokpɔa `inclusion bodies` siawo hã le ahɔhɔ̃mekawo ƒe dɔlélewo abe `ALS` ene me. Woate ŋu ado kplamatse lãmenugbagbeviwo ƒe dɔwɔwɔ nyuie.

Vovototo si le `Inclusion Body Myopathy` kple `Inclusion Body Myositis` dome

Ɣeaɖewoɣi la, wogayɔa `Inclusion Body Myositis` hã be `sporadic inclusion body myositis (sIBM)`. `Sporadic` fia be edzɔna le vome, alo nusi gbɔ wòtso koŋ manɔmee. Esia nye be woatsɔ ade vovototoe kple nɔnɔme mawo tɔgbe siwo nye domenyiŋusẽfianu. Woyɔa esiwo nye domenyiŋusẽfianu be `hereditary inclusion body myopathies (hIMB)`. Ne míegblɔ be `inclusion body myopathies` la, ƒomevi siawo evea siaa nye wo tɔ. Fifia míele nu ƒom tso `sIBM` si dzɔna le vome ŋu.

Aleke wokpɔa `Inclusion Body Myositis` dzea sii? Dodokpɔ kawoe wowɔna?

Be ɖɔkta aɖe anya ne IBM le ŋuwò la, abia wò dzesiwo gbã eye wòado wò lãmekawo kpɔ. Dzesi siwo le inclusion body myositis ŋu ate ŋu asɔ kple nɔnɔme bubuwo, abe polymyositis kple myasthenia gravis ene. Wò ɖɔkta adi nu tɔxɛ aɖewo abe:

• Lãmetsi kawoe wògblẽa nu le? (e.g., le asibidɛwo alo ata me?)
• Ðe ŋutilã ƒe akpa ɖeka koe wògblẽa nu le wua?
• Ðe lãmekawo ƒe gbagbã dzena nyuiea?
• Ƒe nenie nèxɔ esime dzesiawo dze egɔme? (Zi geɖe la, le ƒe 50 xɔxɔ vɔ megbe)

Emegbe la, woateŋu awɔ dodokpɔ geɖe be ``woaɖe`` nɔnɔme bubuwo ɖa, abe:

• Creatine Kinase (CK) dodokpɔ: Esia dzidzea enzyme tɔxɛ aɖe ƒe agbɔsɔsɔ le ʋua me. `CK` ƒe agbɔsɔsɔ sia ateŋu adzi ɖe edzi ne nu gblẽ le lãmekawo ŋu.
• Ʋudodokpɔ hena dɔlékuiwo kple dɔléle vovovo siwo dɔlélenutsiŋutete hena vɛ.
• Electromyogram (EMG): Esia dzidzea elektrikŋusẽ ƒe dɔwɔwɔ le wò lãmekawo me. Wowɔa esia to aŋe suewo dede lãmekawo me.
• Lãmetsiŋusẽ Ŋuti Numekuku (NCS): Esia dzidzea alesi elektrikŋusẽ aɖe zɔna kabakaba to lãmekawo (motor nerves) siwo kpɔa wò lãmekawo dzi la me.

Lãmetsiŋusẽ ƒe dodokpɔ

Mɔ nyuitɔ si dzi nàto aɖo kpe edzi nenye be inclusion-body myositis le ŋuwòe nye be nàɖe lãkusi sue aɖe (biopsy) tso lãmeka si ŋu dɔlélea le la me. Dɔléleŋutinunyala aɖe atsɔ nusuekpɔmɔ̃ alé ŋku ɖe lãmenugbagbeviwo ƒe kpɔɖeŋu sia ŋu. Ne IBM le asiwò la, ate ŋu akpɔ ŋutilã siwo wotsɔ dea eme (protein ƒe ƒuƒoƒo, kuɖɔ, alo vacuoles siwo mesɔ o) le kpɔɖeŋua me.

Ðe atike nyui aɖe li na `Inclusion Body Myositis`?

Nublanuitɔe la, atike nyui aɖeke meli na inclusion body myositis o. To vovo na dɔdzẽ ƒe nɔnɔme bubuwo kple dɔléle siwo dɔlélenutsiŋutete hena vɛ la, mewɔa nu ɖe ​​corticosteroids alo dɔlélenutsiŋutete ƒe atikewo ŋu o.

Gake mègana mɔkpɔkpɔ o! Lãmesẽfefewɔwɔ kple kamedede edziedzi le vevie be wò lãmekawo ƒe ŋusẽ nanɔ anyi ɣeyiɣi didi alesi nàte ŋui. Kamedede ate ŋu akpe ɖe ame ŋu be lãmekawo nagagbɔdzɔ o.

Ne dɔlélea le sesẽm ɖe edzi eye gbesiagbedɔwo wɔwɔ va le sesẽm la, ɖewohĩ ahiã be nàsrɔ̃ mɔ yeye siwo dzi nàto awɔ nuwo. Afi siae dɔwɔwɔ ƒe atikewɔwɔ ate ŋu akpe ɖe ame ŋu le. Le kpɔɖeŋu me, woate ŋu afia ale si nàzã mɔ̃ vovovowo atsɔ akpe ɖe ŋuwò nàdo awu, aɖu nu, ahaŋlɔ nu wò. Ðewohĩ ahiã be ame aɖewo hã nasrɔ̃ ale si woazã bunɔkeke. Ne nu mimi sesẽ na wò la, Nuƒoƒo Kple Gbegbɔgblɔ Ŋuti Dɔléleŋutinunyala (SLP) ate ŋu akpe ɖe ŋuwò. Woate ŋu afia alesi nàmi nu dedie eye nàwɔ nu mimi ƒe kamededewo wò.

Ne `Inclusion Body Myositis` le ŋunye la, nukae wòle be makpɔ mɔ na?

Ne `IBM` le asiwò la, adzi ɖe edzi vivivi. Abe alesi megblɔe va yi ene la, .Esia makpɔ ŋusẽ ɖe wò agbenɔƒe dzi o. Gake ate ŋu akpɔ ŋusẽ ɖe wò agbenɔnɔ ƒe nyonyome dzi. Ðewohĩ ahiã be nàɖo ŋu ɖe ame bubuwo ŋu alo asrɔ̃ nuwo wɔwɔ ƒe mɔnu yeyewo. Ame akpa gãtɔ mebua woƒe azɔlizɔzɔ ƒe ŋutete keŋkeŋ o, gake ame aɖewo ate ŋu ahiã bunɔkeke le ƒe 10-15 megbe.

Aleke malé be na ɖokuinye esime mele agbe kple inclusion-body myositis?

Ele be nànɔ agbe kple `Inclusion body myositis` ɣeyiɣi didi aɖe, eye ateŋu ava zu kuxi vie le ɣeyiɣi aɖe megbe. Mɔ nyuitɔ si dzi nàto anɔ te ɖe esia nue nye be nàwɔ ɖoɖo ɣeyiɣi didi aɖe atsɔ alé be na wò ŋutilã kple susu ƒe lãmesẽ. Ema fia be nàyi edzi anɔ numame suesuesue siwo kpena ɖe ŋuwò be nànɔ lãmesẽ me la wɔm. Le kpɔɖeŋu me:

• Yi wò kamedede ƒe ɖoɖoa dzi. Ðewohĩ èle kamedede ƒe atikewɔwɔ me, alo ɖewohĩ ètrɔ ɖe kamedede ƒe ɖoɖo aɖe si wowɔna le aƒeme ŋu. Ðoɖo sia dzi yiyi akpe ɖe ŋuwò be wò lãmekawo nasẽ ŋu alesi nàte ŋui.
• Follow a ``wellness lifestyle.'' Ne èɖua nu nyuie, mlɔa alɔ̃ nyuie, ɖua nuteɖeamedzi dzi, eye nèlé wò ƒomedodo veviwo me ɖe asi la, àse le ɖokuiwò me be yeƒe lãme sẽ le nusianu me.
• Wɔ ɖeka kple kpekpeɖeŋunahawo. Àte ŋu axɔ susu me ŋusẽ geɖe kple aɖaŋuɖoɖo nyuiwo tso ame bubu siwo to nu si me nèle la me kpɔ alo le to me tom la gbɔ. Enyo ŋutɔ hã be nàse le ɖokuiwò me be "Menye nye ɖeka koe le nusia me tom o."
• Lé ŋku ɖe tɔtrɔ ɖe nɔnɔmewo ŋu le aƒeme kple dɔwɔƒe. Kpekpeɖeŋunamɔ̃ kple kpekpeɖeŋunu geɖe li siwo ate ŋu akpe ɖe ame siwo nye ŋutilã me nuwɔametɔwo ŋu be gbesiagbedɔwo nanɔ bɔbɔe.
• Kpɔ wò ɖɔkta edziedzi. Nɔ kadodo me kple wò ɖɔkta. Gblɔe na wò ɖɔkta enumake ne ède dzesi dzesi yeye aɖewo, abe nu mimi sesẽ ene, alo ne dzesi aɖe si li xoxo la gagblẽ ɖe edzi.
• Lé ŋku ɖe dɔdamɔnu dodokpɔwo ŋu. Numekulawo le atike yeye siwo ate ŋu akpe ɖe ame ŋu le inclusion body myositis la dim ɣesiaɣi. Àte ŋu akpɔ gome le dodokpɔ siawo hã me.

Nɔnɔme sia, si woyɔna be `Inclusion body myositis`, dzɔna zi geɖe le ƒe titina, esime mɔkpɔkpɔ aɖeke meli o. Ame aɖeke mekpɔa mɔ be yeadze dɔléle si womate ŋu ada o, si le ŋgɔ yim la dzi zi ɖeka o. Ate ŋu asesẽ vie be nànɔ te ɖe amesiwo tsɔ ɖe le eme na wò nu ahaɖe eme na wo, vevietɔ ne womese dɔléle sia ŋkɔ kpɔ o.

Gake ɖo ŋku edzi be esia nye dɔléle si le tsitsim blewu ŋutɔ. Eyata, ɣeyiɣi geɖe li be woabu tɔtrɔ siwo le ŋgɔ ŋu ahawɔ asitɔtrɔwo wòasɔ ɖe wo nu. Ame aɖeke mate ŋu agblɔ alesi esia akpɔ ŋusẽ ɖe dziwòe kple kakaɖedzi o. Gake,Ne èzã mɔkpɔkpɔbuɖeame ƒe mɔnu la, nu geɖe li nàte ŋu awɔ be wò lãmesẽ bliboa kple nyonyo nanɔ anyi le ƒe siwo gbɔna me.

Nu vevitɔ kekeake siwo dzi wòle be míaɖo ŋkui (Take-Home Message) .

Enyo, eyata míeƒo nu geɖe tso `Inclusion Body Myositis (IBM)` ŋu. Mlɔeba la, nu vevitɔ kekeake siwo dzi wòle be nàɖo ŋkui lae nye esi:

• IBM nye lãmekawo ƒe gbɔdzɔgbɔdzɔ vivivi ƒe dɔléle si bɔ wu le ƒe 50 xɔxɔ vɔ megbe.Vevea nu mesẽna o, gake le ɣeyiɣi aɖe megbe la, ate ŋu akpɔ ŋusẽ ɖe gbesiagbedɔwo dzi.
• Atike aɖeke meli na esia o , gake kamedede kple kamedede ate ŋu akpe ɖe ame ŋu be lãmekawo nasẽ ŋu ɣeyiɣi didi alesi wòanya wɔe.
• Dzesiawo ate ŋu anye nuwo léle sesẽ, nukikli ne wole zɔzɔm, kple nuɖuɖu mimi sesẽ .
• Womenya nusi tututu gbɔ wòtso o (`idiopathic`), gake ateŋu anye kuxi na dɔlélenutsiŋutete.
• Lãmetsiwo me dzodzro koe ɖoa kpe dɔlélea dzi godoo.
• Esia menye nusi dea ame ƒe agbe afɔku me o , gake ate ŋu akpɔ ŋusẽ ɖe agbenɔnɔ ƒe nyonyome dzi.
• Ele vevie ŋutɔ be nànɔ susu nyui me, awɔ ɖe atikewɔlawo ƒe aɖaŋuɖoɖowo dzi, eye nàxɔ kpekpeɖeŋu si hiã.

Ne wò alo ame aɖe si nènya le dzesi siawo kpɔm la, anyo wu be nàdi atikewɔlawo ƒe aɖaŋuɖoɖo. Ðo ŋku edzi be menye wò ɖeka koe o, ame geɖewo li siwo ate ŋu akpe ɖe ŋuwò!

` Lãmetsiwo ƒe gbɔdzɔgbɔdzɔ, IBM dɔléle, kamedede, lãmekawo ƒe dɔlélewo, ame tsitsiwo ƒe lãmesẽ, nu mimi ƒe kuxiwo, ahɔhɔ̃mekawo ƒe dɔlélewo