Sɔntɛnde, yu kin fil lɛk se yu yay de taya as di de de go, yu tɔŋ de slɔp we yu de tɔk, ɔ yu an ɛn fut dɛn de swɛ? Dɛn tin ya nɔ kin jɔs bi bikɔs i taya. Tide wi de tɔk bɔt wan spɛshal sik we dɛn kɔl ‘ Myasthenia Gravis ’ we kin mek pɔsin gɛt dɛn kayn sik ya ɛn wan nyu tritmɛnt we dɛn dɔn yuz fɔ am. I rili impɔtant fɔ no bɔt dis.
Wetin rili na Myasthenia Gravis?
Fɔ tɔk am simpul wan, myasthenia gravis na wan sik we nɔ de mɛn we wi bɔdi in yon difens sistɛm, we na di imyun sistɛm, kin mistek atak wi yon wɛlbɔdi sɛl dɛn. Dɛn kɔl dis sik we dɛn kɔl ɔtoimyun sik.
Imajin, wan mɛsej we de kɔmɔt na wi bren de travul tru di nɛv dɛn ɛn rich na wan mɔsul, we de du sɔntin. di nyuromכskul jכnkshכn bitwin di nεv εn di mכsul de pwεl pan dis sik. sכm antibodi dεm we wi imyun sistεm de mek de rich dis jכnkshכn εn blכk di fכ fכlכ mεsej dεm. Dis kin mek di mɔsul kin bigin fɔ wik smɔl smɔl .
di tu men kayn antibodi dεm we de mek dis prכblεm na anti- asetilkolin rεsεpכta (AChR) εn anti-mכsul spεsifi k tayrosin kinaz (MuSK) . Yu dɔktɔ go ɛksplen dɛn tin ya to yu.
Wetin na di kɔmɔn sayn dɛm fɔ dis sik?
Dɛn sayn ya kin difrɛn frɔm wan pɔrsin to ɔda pɔrsin. Dɔn bak, di mɔ yu de yuz di mɔsul, na di mɔ i de wik. De tebul wae de dɔŋ ya de sho sɔm pan de sik wae kin kam pan pɔrsin.
| Di sayn we de sho se di sik de | Tɔk bɔt |
|---|---|
| Aylid dɛn we de drɔp | Wan ɔ ɔl tu yay dɛn we nɔ de kɔntrol. Sɔm pipul dɛn kin ivin si tu. |
| Chenj we yu de chenj yu fes | We di mɔsul dɛn na di fes ɛn di jaw wik, dat kin mek tin dɛn chenj lɛk fɔ smayl ɛn fɔ sho se yu vɛks. |
| Wiknɛs na di an, di leg, ɛn di finga dɛn | I nɔ kin izi fɔ du wok dɛn we yu kin du ɛvride lɛk fɔ es sɔntin, fɔ kɔm yu ia, ɔ fɔ waka. |
| I nɔ izi fɔ swɛla | Fɔ fil lɛk se yu de chok we yu de swɛla it ɔ drink. |
| I nɔ izi fɔ tɔk | Chenj na yu vɔys we yu de tɔk, sawnd lɛk se yu de tɔk tru yu nos, ɔ tɔk we yu tay yu tɔŋ. |
Aw di nyu drɔg we dɛn kɔl Rystiggo de wok?
Rystiggo (Rozanolixizumab-noli) na nyu mɛrɛsin we dɛn dɔn gri fɔ fɔ trit myasthenia gravis. i de pan wan klas fכ dכg dεm we dεn kכl nyuonatal Fc rεsεptכr (FcRn) blכk dεm.
Naw lɛ wi si aw dis de wok. As a bin se bifo, di tin we de mek dis sik na di bad bad antibodi dɛm (AChR ɛn MuSK) we de na wi blɔd. Wetin Rystiggo de du na fɔ tɔch dɛn bad bad antibodi ya ɛn mek dɛn pul dɛn kwik kwik wan na wi bɔdi.
Fɔ tɔk am simpul wan, dis mɛrɛsin de wok lɛk filta we de klin wi blɔd ɛn ridyus di bad bad antibodi dɛn we de mek wi gɛt di sik.
we di amoun fכ dεn antibodi dεm ya dכn, di intafεreshכn wit di signal transmishכn bitwin di nεv dεm εn di mכsul dεm de dכn. Dis kin mek di mɔsul dɛn trɛnk bak ɛn dɛn kin kɔntrol di sik dɛn.
Dis mɛrɛsin gud fɔ ɔlman?
Nɔ, dɛn dɔn gri fɔ yuz Rystigmo fɔ big pipul dɛn nɔmɔ we gɛt myasthenia gravis we dɛn dɔn tɛst fɔ antibodies to AChR ɔ MuSK na dɛn blɔd. Pipul wae nɔr gɛt dɛn antibodi ya nɔr kin bɛnifit frɔm dis mɛrɛsin. So, yu dɔktɔ go disayd if dis tritmɛnt fayn fɔ yu.
Aw dɛn kin gi di tritmɛnt ɛn wetin na di sayd ɛfɛkt dɛm?
Dɛn kin gi dis mɛrɛsin as injɛkshɔn insay di tisu we de ɔnda di bɔdi na ɔspitul ɔ klinik. Dɛn kin gi dis mɔ na di say we de dɔŋ di bɛlɛ.
- Di saykl we dɛn kin gi di tritmɛnt:Dɛn kin gi dis vaysin wan tɛm insay di wik fɔ 6 wik. Dɛn kɔl dis tritmɛnt saykl. Afta dat, yu kin go witout tritmɛnt fɔ sɔm tɛm ɛn bigin nyu saykl if nid de. Na yu dɔktɔ disayd ɔl dis.
- Fɔ tek tɛm: Dɛn go kip yu ɔnda di dɔktɔ in sɔpɔtishɔn fɔ lɛk 15 minit afta di injɛkshɔn, bikɔs sɔntɛnde, alɛji kin apin.
| Risk/sayd ɛfɛkt | Wetin fɔ du ɛn wetin fɔ no |
|---|---|
| Situeshɔn dɛn we yu fɔ tɛl yu dɔktɔ wantɛm wantɛm | |
| Aktiv Infɛkshɔn dɛn | If yu gɛt sɔm sayn dɛn lɛk fiva, bɔdi we de at, kɔf, blɔd, i nɔ izi fɔ blo, ɔ yu gɛt dayarɛa, tɛl yu dɔktɔ wantɛm bifo ɔ we yu de du tritmɛnt. Dɛn kin nid fɔ put di tritmɛnt bifo te di infekshɔn klia. |
| Kɔmɔn sayd ɛfɛkt dɛn | |
| Ed de at | Bɔku tɛm, dis na smɔl tin. If i tranga ɔ i nɔ de chenj, tɛl yu dɔktɔ. |
| Nɔs ɛn dayarɛa | Dis kin kɔmɔn insay di fɔs wik dɛm wae pɔrsin gɛt tritmɛnt. Drink bɔku wata ɛn it tin dɛn we nɔ fayn (rays, banana). If i kɔntinyu fɔ de, tɛl yu dɔktɔ. |
| Riakshכn dεm na di sayt we dεn de injεkshכn | I kin rεd, it, εn swεla na di say we dεn injεkt. dis kin ridyus bay we yu chenj di say we yu injεkt pas fכ injεkt na di sem ples εvri tεm. |
Prɔblɛm kin de wit ɔda mɛrɛsin ɛn vaysin dɛn?
Yɛs, dat na tin we rili impɔtant.
- Vaysin: Dɛn nɔ kin gi sɔm vaysin bifo ɔ we dɛn de trit Rystiggo. So, tɛl yu dɔktɔ bifo tɛm bɔt ɛni vaysin we yu de gɛt.
- Ɔda mɛrɛsin dɛn: Ɔda mɛrɛsin dɛn we yu de tek, mɔ di tritmɛnt dɛn we gɛt fɔ du wit di imyun bɔdi lɛk Intravenous Immunoglobulin (IVIg) , ɛn monoclonal antibodies , kin intarakt wit Rystiggo.
So, i impɔtant fɔ tɛl yu dɔktɔ bɔt ɔl di mɛrɛsin dɛn we yu de tek (inklud vaytamɛn ɛn ɛbul prɔdak dɛm) we yu nɔ ayd ɛnitin.
Aw yu go no if di mɛrɛsin de wok?
Insay sɔm wiks we yu bigin fɔ yuz Rystiggo, yu go bigin fɔ fil se yu mɔsul dɛn de strɔng ɛn yu simptom dɛn de bɛtɛ. Bɔt ilɛksɛf yu sik dɔn bɛtɛ, nɔ ɛva stɔp fɔ tek di mɛrɛsin if yu dɔktɔ nɔ advays yu. If yu du dat, dat kin mek yu sik kam bak. Ɔltɛm tɔk to yu dɔktɔ bɔt yu sik.
Mɛsej we dɛn kin kɛr go na os
- Myasthenia Gravis na sik we wi yon imyun sistɛm de atak wi mɔsul dɛm.
- Rystigmo na nyu tritmɛnt fɔ dis sik. I de ɛp fɔ pul di bad bad antibodi dɛm we de mek di sik kɔmɔt na di bɔdi.
- Dis tritmɛnt nɔ fayn fɔ ɔlman. Yu dɔktɔ go no if dis rayt fɔ yu bay we i go chɛk if yu gɛt AChR ɔ MuSK antibodies na yu blɔd.
- If yu gɛt sɔm sayn dɛm fɔ infekshɔn lɛk fiva ɛn kɔf we yu de trit yu, tɛl yu dɔktɔ wantɛm wantɛm.
- I rili impɔtant fɔ tɛl yu dɔktɔ bɔt ɔl di ɔda mɛrɛsin dɛn we yu de tek.
- Nɔ stɔp di mɛrɛsin dɛn we dɛn gi yu we yu nɔ gɛt dɔktɔ advays fɔ ɛni rizin.
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