Sɔntɛnde, yu kin fil lɛk se yu nɔ gɛt trɛnk, ɛn yu mɔsul dɛn kin wik bad bad wan? Ɛspɛshali if wan ɔ ɔl tu di aylid dɛn drɔp, yu fes chenj, ɔ i nɔ izi fɔ yu fɔ tɔk ɔ swɛla? Dɛn tin ya kin bi sayn fɔ wan sik we dɛn kɔl Myasthenia Gravis . Pan ɔl we dis na sik we de mek pɔsin fred, naw dɛn gɛt bɔku fayn tritmɛnt dɛn fɔ am. Tide wi de tɔk bɔt wan pan dɛn kayn nyu tritmɛnt ya we dɔn wok fayn.
Wetin rili na Myasthenia Gravis?
Fɔ tɔk am simpul wan, dis na tin we yu yon bɔdi in imyun sistɛm de atak yu yon mɔsul dɛn. Wi kin kɔl dis ɔtoimyun kɔndishɔn.
Wan mɔsul kin gɛt signal frɔm wi bren na di say we wan nɛv ɛn wan mɔsul sɛl kin mit. dis pכynt fכ kכntakt dεn kכl am di nyuromכskul jכnkshכn. na ya, wan nyurotransmitta we dεn kכl asetilkolin de sεnd di signal to di mכsul, se, "Okay, naw du am."
כltu, bכku pipul dεm we gεt myasthenia gravis de divεlכp antibodi dεm we de atak di rεsεpכta dεm we de gεt dis asetilkolin signal. dεn kכ l dεn antibodi dεm ya anti- asetilkolin rεsεptכr (AChR) antibodi dεm . biכs fכ dεn antibodi dεm ya, di mכsul dεm nכ de gεt di signal frכm di bren fayn fayn wan. Di tin we kin apin na we di mɔsul dɛn kin wik.
| Di kɔmɔn simptom dɛm fɔ myasthenia gravis | |
|---|---|
| Aylid dɛn we de drɔp | Wan ɔ ɔl tu di yay dɛn we de drɔp we dɛn nɔ ebul fɔ kɔntrol. |
| Fes chenj | Di chenj we yu de luk we yu de smayl ɔ tɔk bikɔs di mɔsul dɛn na yu fes, yu mɔt, ɔ yu jaw wik. |
| Wiknɛs na di limb dɛn | Yu nɔ gɛt trɛnk na yu an, yu fut, ɛn yu finga dɛn. I nɔ izi fɔ es wet ɛn waka. |
| I nɔ izi fɔ swɛla | I nɔ izi fɔ swɛla it ɔ drink, chok ɔltɛm. |
| I nɔ izi fɔ tɔk | Voys de chenj ɛn slɔr wɔd dɛn we yu de tɔk. |
De impɔtant tin na dat nɔr to ɔl pɔrsin wae gɛt dis sik go gɛt ɔl dɛn kayn sik ya. Di sayn dɛm kin difrɛn difrɛn wan bay aw di sik tranga.
Aw Ultomiris (Ravulizumab) de wok?
No mɛrɛsin nɔ de fɔ mɛn myasthenia gravis yet. Bɔt bɔku fayn tritmɛnt dɛn de we kin ɛp fɔ kɔntrol di sik dɛn ɛn liv nɔmal layf. Ultomiris na wan pan dɛn nyu tritmɛnt dɛn de.
Ultomiris na spεshal antibodi we de blכk wan protin na wi imyun sistεm we dεn kכl C5 . dis C5 protin na in de εp fכ damej di mכsul. So we Ultomiris stɔp am, yu imyun sistɛm kin stɔp fɔ pwɛl di mɔsul sɛl dɛn. Dat min se dis mɛrɛsin de wok bay we i de go rayt to di rut fɔ di sik.
Aw dɛn kin gi dis tritmɛnt?
Dɛn kin gi yu dis mɛrɛsin as infushɔn we dɛn kin put insay yu bɛlɛ (IV infushɔn) lɛk salin. Na dɔktɔ ɔ tren wɛlbɔdi wokman na ɔspitul ɔ klinik kin gi yu dis.
Bɔku tɛm, dɛn go gi yu di fɔs doz, dɔn dɛn go gi yu ɔda doz tu wiks afta dat. Afta dat, yu go nid fɔ kɔntinyu fɔ tek dis tritmɛnt ɛvri et wik . Bɔt yu dɔktɔ go disayd aw lɔng yu go nid fɔ tek am ɛn us doz (bɔku tɛm na bay yu bɔdi wet) yu go nid fɔ tek am fɔ .
I rili impɔtant fɔ tek yu mɛrɛsin di rayt tɛm. If yu mis wan doz, kɔl yu dɔktɔ bifo tɛm .
Aw yu go no if di mɛrɛsin de wok?
Yu go bigin fɔ fil se yu mɔsul dɛn de strɔng smɔl smɔl. Yu go ebul fɔ du di tin dɛn we yu de du ɛvride wit izi. Insay klinik stɔdi, dɛn dɔn si sɔm impɔtant tin dɛn we kin apin to di sik insay smɔl wik.
Bɔt if yu nɔ fil ɛni difrɛns, ɔ if i tan lɛk se yu sik de wɔs, mek shɔ se yu tɔk to yu dɔktɔ . I kin ebulChenj di doz, gi am ɔda mɛrɛsin, ɔ chenj to ɔda tritmɛnt.
Wetin na di bad tin dɛn we kin apin to pɔsin?
Lɛk ɛni mɛrɛsin, i kin mek pɔsin gɛt smɔl smɔl sayd ɛfɛkt dɛn. Di sayd ɛfɛkt dɛm we kin apin pas ɔl na:
- Blɔt (dayarɛa) .
- Nos ɔ trot infɛkshɔn
- Trot de at
- Kɔmɔn kol simptom dɛm
Fɔ kɔntrol di we aw yu bɛlɛ de pwɛl, it layt it dɛn lɛk rays, banana, ɛn bred. Drink bɔku wata. Ridyus yu drink dɛn we gɛt kafinɛ lɛk kɔfi. If dɛn tin ya nɔ ɛp, ɔ if di sayn dɛn lɛk we yu trot de at ɔ yu nos we de rɔn de kɔntinyu, tɔk to yu dɔktɔ . Na in go disayd di bɛst tritmɛnt fɔ yu.
Wetin na di spɛshal tin dɛn we wi fɔ no? (REMS Program)
Dis rili impɔtant!
Ultomiris na mɛrɛsin we dɛn kin gi ɔnda spɛshal risk mɛnejɛmɛnt program (Risk Evaluation and Mitigation Strategy - REMS). Dis na bikɔs i rili smɔl bɔt siriɔs risk de fɔ mek yu gɛt baktriyal infɛkshɔn we dɛn kɔl meningococcal, mɔ di meningitis, we kin afɛkt di bren ɛn di spaynal kɔd.
Fɔ dis rizin, yu dɔktɔ go gi yu spɛshal kad fɔ sef di pɔsin we sik .
- I de sho klia wan di sayn dɛm fɔ dɛn infɛkshɔn ya (e.g. fiva we de kam wantɛm wantɛm, ed we de at, stif nɛk, nɔs, vɔmit, ɛn fɔ fil lɛk layt).
- Dɛn tɔk bak se if dɛn kayn sik ya apin, pɔsin fɔ go na di Imejɛnsi Tritmɛnt Yunit (ETU) wantɛm wantɛm.
- I impɔtant fɔ kip dis kad wit yu ɔltɛm — ɔl tu di tɛm we dɛn de trit yu ɛn fɔ te 8 mɔnt afta di tritmɛnt dɔn stɔp.
Apat frɔm dat, bifo yu bigin fɔ trit yu, yu dɔktɔ go aks yu if dɛn dɔn gi yu vaysin fɔ mek yu nɔ gɛt di sik we dɛn kɔl meningococcal disease. If nɔto so, dɛn go advays yu fɔ gɛt di vaysin at le tu wiks bifo yu bigin tritmɛnt.
Prɔblɛm wit ɔda mɛrɛsin dɛn
I rili impɔtant fɔ tɛl yu dɔktɔ if yu de tek ɛni ɔda tritmɛnt, mɔ:
- Tritmɛnt we de pul plasma na di blɔd (plasma exchange ɔ plasmapheresis) .
- Intravenɔs imyunoglobulin (IVIg) tritmɛnt
- Nionatal Fc risεptor (FcRn) blכk dכg fכ myasthenia gravis
Tin dɛm lɛk dis kin mek Ultomiris nɔ wok fayn. So tɛl yu dɔktɔ bɔt ɔl di mɛrɛsin dɛn we yu de tek, ivin di vaytamɛn dɛn.
Mɛsej we dɛn kin kɛr go na os
- Ultomiris (Ravulizumab) na wan mɔdan, saksesful tritmɛnt fɔ pasɛnt dɛn we gɛt myasthenia gravis (wit AChR antibodies).
- Dis kin mek di bɔdi in imyun sistɛm nɔ atak in yon mɔsul dɛn.
- Dis na tritmɛnt we dɛn kin gi insay di bɛlɛ ɛvri et wik (afta di fɔs dos dɛm).
- Bikɔs risk de fɔ gɛt meningococcal infection we yu de tek dis mɛrɛsin, i fɔ gɛt vaysin ɛn kip yu pesin sefty kad wit yu.
- Tɔk wit yu dɔktɔ opin wan bɔt ɛni bad bad tin we go apin to yu, di sayn dɛn we de mek yu sik de wɔs, ɔr fɔ yuz ɔda mɛrɛsin. Gud kɔmyunikeshɔn bitwin yu ɛn yu dɔktɔ rili impɔtant fɔ mek yu tritmɛnt go bifo.
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