Yu dɔktɔ dɔn tɛl yu ɔ yu pikin bɔt dis mɛrɛsin we dɛn kɔl Casimersen? Ɔ sɔntɛm yu dɔn yɛri dis nem sɔnsay, bɔt yu nɔ no gud gud wan wetin i bi, wetin i de fɔ, ɛn aw i de wok? Fɔ tru, dis nɔto mɛrɛsin we dɛn kin tɔk bɔt bɔku tɛm na wi kɔntri. So i rili nɔmal fɔ gɛt kwɛstyɔn bɔt am, fɔ fil fred smɔl. So nɔ fred. Tide, wi go tɔk bɔt dis mɛrɛsin we dɛn kɔl Casimersen, fɔ fɛn ansa to ɔl di kwɛstyɔn dɛn we yu gɛt na yu maynd, simpul wan, insay Sinhala we yu ɔndastand.
Fɔ tɔk am simpul wan, wetin na Kasimersen?
Casimersen na wan patikyula mɛrɛsin we dɛn kin yuz fɔ mɛn wan sik we dɛn kɔl Duchenne muscular dystrophy (DMD) . Dɛn kin kɔl am bak wit di brand nem AMONDYS 45.
Naw yu kin de wɔnda, wetin na Duchenne Muscular Dystrophy (DMD)? Na jεnεtik kכndishכn, we min se i de de we dεn bכn am. I kin mek di mɔsul dɛn na di bɔdi wik smɔl smɔl ɛn atrofi. Dis sik kin afɛkt bɔy pikin dɛn mɔ.
Tink bɔt di mɔsul dɛn na wi bɔdi lɛk se dɛn tan lɛk brik wɔl. Dɛn brik dɛn de nid wan layt simen fɔ mek dɛn ebul fɔ ol dɛn togɛda ɛn fɔ mek dɛn strɔng. Semweso, wan spɛshal prɔtin we dɛn kɔl distrofin impɔtant fɔ mek di sɛl dɛn na wi mɔsul dɛn strɔng ɛn gɛt wɛlbɔdi. pan pɔsin we gɛt DMD, di bɔdi nɔ de mek dis distrofin protin, ɔ i de mek smɔl pan am. So, lɛk wɔl we nɔ gɛt siment, di mɔsul dɛn kin bigin fɔ wik smɔl smɔl.
dis na di say we wan dכg we dεn kכl Casimersen de kam in. Wetin dis dכg de du na, i de go insay di bכdi, i de wok na di jεnεtik lεvεl, εn i de εp fכ mek di dystrophin protin we nכ de. we di distrofin we de na di bכdi de go כp, di rεt we di mכsul dεm de wik de slo, εn dεn trεnk kin bכku to sכm tεm.
Di impɔtant tin na dat dis nɔto mɛrɛsin fɔ DMD. Bɔt i kin ɛp fɔ kɔntrol di damej we di sik kin mek di mɔsul dɛn kin pwɛl ɛn mek di pɔsin in layf bɛtɛ.
Tin dɛm wae yu fɔ tɛl yu dɔktɔ bifo yu tek dis mɛrɛsin
Jɔs lɛk ɛni mɛrɛsin, i impɔtant fɔ tɛl yu dɔktɔ bɔt yu kɔmplit wɛlbɔdi istri bifo yu bigin fɔ trit Casimersen. Dis na bikɔs di dɔktɔ go yuz di infɔmeshɔn we yu gi fɔ disayd if dis mɛrɛsin fayn fɔ yu ɛn if i nɔ bad. Mek shɔ se yu tɛl dɛn bɔt dɛn tin ya mɔ.
- Kidni sik: If yu gɛt ɛni sik na yu kidni, mek shɔ se yu tɛl yu dɔktɔ bɔt am. Dis mɛrɛsin de kɔmɔt na di bɔdi tru di kidni dɛm. So, if yu kidni dɛn nɔ de wok fayn, yu fɔ tek tɛm mɔ.
- Alɛji: Tɛl wi if yu dɔn ɛva gɛt alɛji to Casimersen, ɛni ɔda mɛrɛsin, it, ɔ sɔm day. I impɔtant fɔ tɛl wi bɔt ɛni alɛji, ivin smɔl wan we kin apin.
- Bɛlɛ: If yu gɛt bɛlɛ ɔ yu de tray fɔ gɛt bɛlɛ, tɔk to yu dɔktɔ bɔt am.
- If yu na mama we de gi pikin in bɛlɛ: If yu na mama we de gi pikin in bɛlɛ, mek shɔ se yu tɛl yu dɔktɔ.
Nɔ ayd dɛn tin ya. Di sakses fɔ di tritmɛnt ɛn yu sef de dipen pan aw yu de tɔk to di dɔktɔ opin wan.
Aw dɛn kin gi dis mɛrɛsin to di bɔdi?
Casimersen nɔto mɛrɛsin we dɛn kin tek as pil. Dɛn kin gi am to di bɔdi bay we dɛn inj am na wan vein . Dɛn kin kɔl dis bak `Intravenous infusion`.
Dis nɔto sɔntin we yu go ebul fɔ du na os. Dɛn kin jɔs gi dis tritmɛnt na ɔspitul ɔ klinik, ɔnda di dairekt sɔpɔt fɔ dɔktɔ, nɔs, ɔ tren wɛlbɔdi pɔsin. So natin nɔ de fɔ wɔri bɔt. Dɛn go mek shɔ se dɛn gi di bɔdi di rayt doz fɔ di rayt tɛm.
We yu de gi pikin dɛn dis mɛrɛsin
Bikɔs DMD na sik we dɛn kin no we dɛn smɔl, bɔku tɛm dɛn kin gi dis tritmɛnt to pikin dɛn. So sɔm tin dɛn de we yu fɔ tek tɛm wit mɔ we yu de gi pikin dis mɛrɛsin. So bifo yu bigin dis tritmɛnt fɔ yu pikin, aks yu dɔktɔ ɔl di kwɛstyɔn dɛn we yu gɛt bɔt am.
Wetin a go du if a tek bɔku mɛrɛsin?
Bikɔs dɛn kin gi dis na ɔspitul, di chans fɔ mek dis apin rili smɔl. Bɔt lɛ wi tek am se sɔm kayn we, mɔ pan dis mɛrɛsin dɔn go insay di bɔdi pas aw i nid. If dat apin, dɛn fɔ du sɔntin wantɛm wantɛm.
If ɛnitin apin, kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Kɔlɔmbɔ Nashɔnal Ospital wantɛm wantɛm . If nɔto dat, kɛr di pɔsin go na di ɔspitul Imejɛnsi Tritmɛnt Yunit (ETU) we de nia yu ɛn nɔ de te.
Impɔtant notis: Mɛmba se dis mɛrɛsin na fɔ di pɔsin nɔmɔ. Nɔ sheb ɔ gi dis mɛrɛsin to ɛni ɔda pɔsin fɔ ɛni rizin.
Wetin fɔ du if yu mis wan doz?
Fɔ gɛt di bɛst rizɔlt frɔm dis tritmɛnt, i rili impɔtant fɔ tek yu dos dɛn di de dɛn we dɛn dɔn sɛtul ɛn di tɛm dɛn we dɛn dɔn sɛtul. Yu dɔktɔ go dɔn gi yu di de dɛn fɔ kam tek yu mɛrɛsin. Mek shɔ se yu go pan dɛn de dɛn de.
If yu nɔ ebul fɔ atɛnd yu apɔntinmɛnt we yu dɔn sɛtul bikɔs ɔf wan rizin we yu nɔ go ebul fɔ avɔyd, duya kɔntak yu dɔktɔ ɔ di klinik usay dɛn de trit yu wantɛm wantɛm.Dɛn go advays yu bɔt wetin fɔ du nɛks. Nɔ ɛva disayd fɔ yusɛf ɛn skip di apɔntinmɛnt fɔ tek mɛrɛsin.
Ɛni bad bad tin dɛn de we kin apin to am?
Lɛk ɛni mɛrɛsin, Casimersen kin mek sɔm sayd ɛfɛkt dɛn. Bɔt nɔto ɔlman go gɛt ɔl dɛn bad bad tin ya. Sɔm pipul dɛn nɔ kin gɛt ɛni sayd ɛfɛkt atɔl. De impɔtant tin na fɔ no wetin na dɛn sayd ɛfɛkt ya ɛn uswan dɛn siriɔs.
Fɔ mek i izi fɔ ɔndastand, lɛ wi sheb dɛn sayd ɛfɛkt ya to tu kategori.
| Sayd ɛfɛkt we pɔsin kin gɛt | Diskripshɔn ɛn wetin fɔ du |
|---|---|
| Siriɔs sayd ɛfɛkt dɛm we dɛn fɔ ripɔt to di dɔktɔ wantɛm wantɛm | |
| Alɛji we pɔsin kin gɛt | Dɛn tin ya kin apin kwik kwik wan. If yu gɛt ɛni wan pan dɛn tin ya, lɛk we yu gɛt rɛd skin rɔsh, it ɔlsay na yu bɔdi, yu fes, yu lip, yu tɔŋ ɔ yu trot we de swel, ɔ we i nɔ izi fɔ blo, go to dɔktɔ wantɛm wantɛm . |
| Kidni injury | If yu notis ɛni sayn lɛk we di urine we yu de mek go dɔŋ wantɛm wantɛm, yu anklɛ, an, ɔ fut we de swel, tɛl yu dɔktɔ wantɛm wantɛm. Bɔku tɛm yu dɔktɔ go chɛk fɔ dis bay we i de du blɔd ɛn urine tɛst. |
| Sayd ɛfɛkt dɛm wae nɔr kin bi natin fɔ wɔri bɔt, bɔt yu fɔ ripɔt to yu dɔktɔ if dɛn kɔntinyu | |
| Kɔf ɛn trot we de at | Nɔmal kɔf ɔ yu trot kin at smɔl. |
| Fiva | Yu kin fil smɔl fiva. |
| Ed pen ɛn jɔyn pen | Yu kin gɛt ed we de at ɔ yu jɔyn pen. |
| Simptom dɛm we tan lɛk kol | Yu kin gɛt sɔm sayn dɛm fɔ kol, lɛk fɔ rɔn na yu nos ɛn yu nos kin rɔtin. |
Dis list nɔ kin gɛt ɔl di sayd ɛfɛkt dɛn. If yu gɛt ɛni sayn we nɔ kɔmɔn ɔ we de mɔna yu, nɔ shem fɔ tɔk to yu dɔktɔ bɔt am.
Ɛni intarakshɔn de wit ɔda mɛrɛsin dɛn?
As wi no naw, dɛn nɔ ripɔt se Casimersen kin mek big big intarakshɔn wit ɔda mɛrɛsin dɛn.
Bɔt fɔ mek yu de na di say we sef, tɛl yu dɔktɔ bɔt ɔl di mɛrɛsin dɛn we yu de tek (inklud di mɛrɛsin dɛn we yu de tek, vaytamɛn dɛn, ɛbul mɛrɛsin dɛn, Ayurveda mɛrɛsin dɛn, ɛn sɔpɔtmɛnt dɛn). I impɔtant bak fɔ tɛl yu dɔktɔ if yu de smok ɔ drink rɔm.
Aw fɔ kip di mɛrɛsin?
Dis nɔto sɔntin we yu fɔ tink bɔt. Bikɔs yu nɔ go ebul fɔ kɛr dis mɛrɛsin go na os. Bikɔs na ɔspitul ɔ klinik nɔmɔ dɛn kin gi am, dɛnsɛf kin kip am fayn fayn wan na di rayt tɛmpracha.
Mɛsej we dɛn kin kɛr go na os
- Casimersen na wan patikyula mɛrɛsin we de trit wan jenɛtik kɔndishɔn we dɛn kɔl Duchenne Muscular Dystrophy (DMD).
- dis de wok bay we i de mek wan protin we dεn kכl distrofin, we nכ de na di bכdi, εn i de kכntrכl di mכsul dεm we wik.
- Dɛn kin gi dis bay we dɛn injɛkshɔn insay wan vein, ɛn na ɔspitul ɔ klinik nɔmɔ dɛn kin du am, ɔnda dɔktɔ in sɔpɔtishɔn.
- Bifo yu bigin fɔ trit yu, tɛl yu dɔktɔ ɔl yu wɛlbɔdi infɔmeshɔn (espɛshali kidni sik ɛn alɛji).
- If yu notis ɛni sayn fɔ se yu gɛt siriɔs alɛji (di skin de rɔsh, yu de swel) ɔ yu de afɛkt di kidni dɛn (we yu nɔ de pis bɛtɛ, yu de swel), tɛl yu dɔktɔ wantɛm wantɛm .
- Tek yu mɛrɛsin di de ɛn tɛm we yu dɔktɔ tɛl yu fɔ tek. If yu gɛt ɛni prɔblɛm, duya tɛl wi bifo tɛm.
- Tɔk opin wan wit yu dɔktɔ bɔt ɛni kwɛstyɔn ɔ tin we yu de fred.
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