Yu pikin ɔ yu fambul gɛt Spinal Muscular Atrophy, ɔ SMA fɔ shɔt tɛm? If na so, yu dɔktɔ go dɔn tɛl yu bɔt wan mɛrɛsin we dɛn kɔl Risdiplam. We yu yɛri dis nem, yu kin fred smɔl. Yu kin gɛt bɔku kwɛstyɔn dɛn na yu maynd, lɛk, "Us kayn mɛrɛsin na dis, aw dɛn kin gi am, wetin go apin?" Wi go ansa ɔl dɛn kwɛstyɔn ya simpul we we yu go ɔndastand. Mek wi fain out exactly wetin na dis medicine.
Fɔ tɔk am simpul wan, wetin na Risdiplam?
Risdiplam (brand nem Evrysdi) na wan mɛrɛsin we dɛn kin yuz fɔ trit wan sik we dɛn kɔl Spinal Muscular Atrophy (SMA). I kin kam as sɔlv.
Naw lɛ wi si wetin dis rili min. Imajin se wi mɔsul dɛn nid spɛshal kayn prɔtin fɔ wok fayn ɛn fɔ mek dɛn strɔng. pan pɔsin we gɛt SMA, bikɔs ɔf di jɛnɛtik rizin, di bɔdi de mek smɔl smɔl pan dis protin. Dis na di rizin we mek di mɔsul dɛn kin wik smɔl smɔl ɛn dɛn kin atrofi.
So dis Risdiplam drɔg de du fayn fayn wok . I de ɛp wi bɔdi fɔ mek mɔ pan da spɛshal prɔtin de we nɔ de. I tan lɛk se pɔsin de ɛp faktri fɔ mek i wok fayn bak we i slo smɔl. we dis protin de prodyuz pasmak na di bכdi, i de εp fכ slo di rεt fכ di mכsul dεm we de wik εn kכntrol di sik dεm we de bכku.
Tin dɛm wae yu fɔ tɛl yu dɔktɔ bifo yu bigin fɔ tek mɛrɛsin
I rili impɔtant fɔ tɔk to yu dɔktɔ opin wan bifo yu gi yu ɔ yu pikin dis mɛrɛsin. If ɛni wan pan dɛn tin ya apin to yu, mek shɔ se yu tɔk bɔt am.
| Wetin yu nid fɔ no | Wetin mek dat impɔtant? |
|---|---|
| Alɛji we pɔsin kin gɛt | Tɛl yu dɔktɔ if yu gɛt alɛji (alɛji) to Risdiplam ɔ ɛni ɔda mɛrɛsin, it, ɔ day. |
| Bɛlɛ ɔ tray fɔ gɛt bɛlɛ | Dis mɛrɛsin kin mek di pikin gɛt siriɔs prɔblɛm wit di pikin if i tek am we i gɛt bɛlɛ. So i rili impɔtant fɔ tɔk bɔt dis.. |
| Fɔ gi pikin in mama in bɛlɛ | If yu na mama we de gi pikin in bɛlɛ, tɛl yu dɔktɔ. |
Aw ɛksaktɔli a kin yuz dis mɛrɛsin?
Dis na smɔl rispɔnsibul tin fɔ du. Bɔt nɔ wɔri, yu go yus to am afta sɔm tɛm. I bɛtɛ fɔ gi di mɛrɛsin di sem tɛm ɛvride, jɔs lɛk aw di dɔktɔ tɛl yu.
- Aw fɔ pripia: Was yu an fayn fayn wan wit sop bifo yu pripia di mɛrɛsin ɛn afta yu dɔn gi am.
- Kɔrɛkt mɛzhɔmɛnt: Yu go gɛt spɛshal ɔral sirinj wit dis mɛrɛsin. Yuz di sirinj fɔ mɛzhɔ di rayt amount we yu dɔktɔ tɛl yu fɔ tek. Nɔ yuz ɛni ɔda spun ɔ kɔp fɔ mɛzhɔ.
- If yu gi am wantɛm wantɛm: Afta yu dɔn drɔ di mɛrɛsin insay di sirinj, yu fɔ gi am to di pɔsin insay 5 minit . Nɔ lɛf am fɔ lɔng tɛm pas dat.
- Bifo ɔ afta it?: Dɛn kin gi dis wit it ɔ atɔl it. If i tan lɛk se yu bɛlɛ dɔn pwɛl, i go fayn fɔ gi am afta yu dɔn it. If yu de gi pikin in mama in bɛlɛ, yu kin gi am bifo ɔ afta yu gi yu mama in bɛlɛ.
- Nɔ miks: Nɔ ɛva miks dis mɛrɛsin wit fɔmula ɔ ɛni ɔda kayn milk.
- Gi sɔm wata: Afta yu dɔn gi di pɔsin di mɛrɛsin, gi di pɔsin sɔm wata fɔ drink. Dis go ɛp wi fɔ mek shɔ se dɛn dɔn swɛla ɔl di mɛrɛsin.
- If i kam pan yu skin ɔ yu yay: If yu aksidɛntli gɛt di mɛrɛsin na yu skin, was di say fayn fayn wan wit sop ɛn wata. If i go insay yu yay, was am fayn fayn wan wit wata nɔmɔ.
Kɔntinyu fɔ tek dis mɛrɛsin te yu dɔktɔ tɛl yu fɔ stɔp. Nɔ stɔp ɔ chenj di doz fɔ yusɛf.
We dɛn gi am to smɔl pikin dɛn
Sɔntɛnde, dɛn kin advays dis mɛrɛsin ivin fɔ pikin dɛn we dɛn jɔs bɔn. Bɔt na yu dɔktɔ nɔmɔ go disayd bɔt dis. So, yu fɔ tek tɛm mɔ we yu de gi am to yɔŋ pikin dɛn.
Wetin fɔ du if yu mis wan doz fɔ mɛrɛsin?
Wi nɔ kin mɛmba ɔltin ɔltɛm. So i pɔsibul fɔ fɔgɛt fɔ gi wan doz fɔ mɛrɛsin. If dat apin, nɔ wɔri.
Imajin se yu fɔ gi di mɛrɛsin na 8 oklɔk mɔnin. Yu fɔgɛt am.
- If i nɔ let pas 6 awa: If yu mɛmba bifo 2 oklɔk na nɛt (dat na, insay 6 awa frɔm di tɛm we dɛn dɔn sɛtul), tek di doz we yu mis jɔs lɛk aw yu mɛmba.
- If i let pas 6 awa: If yu mɛmba afta 2 oklɔk na nɛt, nɔ go da tɛm de.. Abandɔn am kpatakpata ɛn gi am di nɛks tɛm lɛk aw dɛn dɔn plan am na 8 oklɔk mɔnin di nɛks de.
Di tin we impɔtant pas ɔl: Nɔ gi tu doz mɛrɛsin wan tɛm ɔ dubl di doz jɔs bikɔs yu fɔgɛt fɔ tek am fɔ ɛni rizin. If di pikin vɔmit afta i tek di mɛrɛsin ɔ i tink se dɛn nɔ swɛla am ɔl, nɔ gi di mɛrɛsin igen di sem tɛm. Gi di nɛks doz di tɛm we dɛn dɔn sɛtul di nɛks de.
Yu tink se intarakshɔn de wit ɔda mɛrɛsin dɛn?
Yes, sɔm mɛrɛsin dɛn kin intarakt wit Risdiplam. Di men wan we dɛn dɔn no te naw na di dayabitis drɔg we dɛn kɔl Metformin .
Bɔt dis list nɔ kɔmplit. So we yu go to yu dɔktɔ, tɛl am bɔt ɛni mɛrɛsin we yu ɔ yu pikin de tek. Dat min se, .
- Mɛrɛsin dɛn we dɔktɔ dɛn kin gi pɔsin
- Mɛrɛsin dɛn we nɔ gɛt prɛskrishɔn we yu kin bay na di famasi
- Vitamin, nyutrishɔn sɔpɔtmɛnt dɛn
- Sinhala mɛrɛsin, Ayurveda mɛrɛsin
- If yu de smok ɔ drink rɔm, tɛl dɛn bak bɔt am.
Dɔn yu dɔktɔ go ebul fɔ plan di tritmɛnt sef wan.
Speshal tin dɛn we yu fɔ no bɔt we yu de tek mɛrɛsin
Bɛlɛ ɛn kɔntrol fɔ bɔn pikin
Dis rili impɔtant . Risk de fɔ mek di pikin gɛt siriɔs prɔblɛm wit di pikin if yu gɛt bɛlɛ we yu de tek dis mɛrɛsin.
- Bifo yu bigin fɔ tek di mɛrɛsin, yu fɔ tek bɛlɛ tɛst fɔ no if yu nɔ gɛt bɛlɛ.
- Yu fɔ yuz wan we we rili wok fɔ mek yu nɔ bɔn pikin di wan ol tɛm we yu de tek di pil ɛn fɔ at le wan mɔnt afta yu dɔn stɔp di pil.
- Tɔk klia wan wit yu dɔktɔ bɔt di we aw yu de kɔntrol di pikin we fayn fɔ yu.
Fɔ bɔn pikin
Sɔm pipul dɛn de wɔri se dis mɛrɛsin kin afɛkt di we aw pɔsin kin bɔn pikin. If yu gɛt ɛnitin fɔ wɔri bɔt fɔ bɔn pikin tumara bambay, nɔ shek fɔ tɔk to yu dɔktɔ bɔt dat.
Wetin na di sayd ɛfɛkt dɛn we di mɛrɛsin kin gɛt?
Lɛk ɛni mɛrɛsin, dis mɛrɛsin kin mek sɔm bad bad tin dɛn apin. Bɔt, nɔto ɔlman kin gɛt dɛn. Di tebul we de dɔŋ ya sho klia wan wetin na dɛn tin ya.
| Nature of di sayd ɛfɛkt | Di tin dɛn we dɛn de ɛkspɛkt |
|---|---|
| Tin dɛn fɔ tɛl yu dɔktɔ wantɛm wantɛm | |
| Siriɔs Alɛji Riakshɔn dɛn | Skin rash, i kin it bad bad wan, yu fes, yu lip, yu tɔŋ ɔ yu trot kin swel (i kin mek yu nɔ ebul fɔ blo). |
| If i kɔntinyu ɔ i de mɔna yu, tɛl yu dɔktɔ. | |
| Kɔmɔn sayd ɛfɛkt dɛn |
|
Dis list nɔ kin gɛt ɔl di sayd ɛfɛkt dɛn. If yu notis ɛnitin we nɔ kɔmɔn apat frɔm dɛn tin ya, tɛl yu dɔktɔ.
Aw fɔ kip di mɛrɛsin?
I rili impɔtant bak fɔ kip dis mɛrɛsin fayn fayn wan.
- Di bɛst we: I bɛtɛ fɔ kip am na frij. Bɔt nɔ ɛva de na friza. Nɔ mek i friz. Kip am insay di ɔrijinal bɔtul we i kam insay, fa frɔm layt.
- Di tɛm we dɛn fɔ kip am: Dɛn fɔ yuz di mɛrɛsin insay 64 dez frɔm di de we dɛn miks am ɛn di famasi gi am. Afta dat, trowe ɛni mɛrɛsin we lɛf.
- Rum tɛmpracha: If ɛnitin apin, lɛk we yu de travul, yu kin kip am na rum tɛmpracha (we nɔ rich 40 digri sɛlshiɔs) fɔ te 5 dez. Dɛn 5 dez de nɔ nid fɔ bi kɔnsɛkutiv. Fɔ ɛgzampul, yu lɛf am fɔ wan de tide, put am bak na frij, lɛf am fɔ ɔda de wan wik afta dat... Afta di 5 de dɔn, yu nɔ go ebul fɔ lɛf am bak.
- Kip fa frɔm pikin dɛn: Jɔs lɛk ɔl di mɛrɛsin dɛn, kip dis wan usay smɔl pikin dɛn ɛn animal dɛn we dɛn kin mɛn na os nɔ go ebul fɔ rich.
Aw yu kin trowe di mɛrɛsin we lɛf?
Nɔ jɔs trowe mɛrɛsin dɛn we dɔn pas ɔ we yu nɔ want na di dɔti ɔ was dɛn dɔŋ di tɔylɛt. Aks yu dɔktɔ fɔ advays.
Mɛsej we dɛn kin kɛr go na os
- Risdiplam na spɛshal mɛrɛsin we dɛn kin yuz fɔ kɔntrol di wikɛd we di mɔsul dɛn kin wik we dɛn kin gɛt Spinal Muscular Atrophy (SMA).
- Yuz di spɛshal sirinj we de kam wit di mɛrɛsin ɔltɛm ɛn gi di rayt mɔni we di dɔktɔ tɛl yu.
- If yu mis wan doz, skip am if i let pas 6 awa ɛn tek yu nɛks doz di tɛm we dɛn dɔn sɛtul. Nɔ ɛva dubl di doz.
- Tɛl yu dɔktɔ bɔt ɔl di ɔda mɛrɛsin dɛn, vaytamɛn dɛn, ɛn ivin di Sinhala mɛrɛsin dɛn we yu de tek.
- Nɔ gɛt bɛlɛ we yu de tek dis mɛrɛsin ɛn fɔ wan mɔnt afta yu dɔn stɔp. I impɔtant fɔ yuz di rayt we fɔ kɔntrol di pikin.
- If yu tink se yu aksidɛntli it ɔvados ɔf mɛrɛsin, kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta wantɛm wantɛm na di Kɔlɔmbɔ Nashɔnal Ospital , ɔ go na di Imejɛnsi Tritmɛnt Yunit (ETU) na di ɔspitul we de nia yu.
💬 Comments (0)
No kɔmɛnt nɔ de yet. Ad yu kɔmɛnt ya fɔ di fɔs tɛm.
Ad yu kɔmɛnt