We di dɔktɔ tɛl yu pikin ɔ yu fambul se dɛn gɛt wan sik we dɛn kɔl Spinal Muscular Atrophy (SMA), aw i go dɔn ebi ɛn de mek pɔsin fred... Na sɔntin we rili sɛnsitiv. Bɔt nɔ wɔri. Tide, mɛrɛsin sayɛns dɔn go bifo bɔku. Nyu tritmɛnt dɛn de wae kin ɛp fɔ fɛt dɛn sik ya ɛn mek layf izi. Wan pan dɛn kayn spɛshal tritmɛnt ya we dɔn go bifo na Nusinersen. Yu go dɔn yɛri bɔt am ɔnda di brand nem Spinraza. So, tide, lɛ wi tɔk simpul ɛn pɔlitiks bɔt dis mɛrɛsin, aw dɛn de gi am, ɛn wetin yu nid fɔ no.
Fɔ tɔk am simpul wan, wetin na Nusinersen?
Nusinersen na spɛshal drɔg we dɛn mek spɛshal fɔ trit Spinal Muscular Atrophy (SMA). SMA na wan sik we pɔsin kin gɛt we i kam pan jɛnɛtiks. insay dis, di nεv sεl dεm (mכtal nyuron dεm) we de kכntro wi mכsul dεm de wik sכmtεm. Dɔn di mɔsul dɛn kin stɔp fɔ wok fayn fayn wan.
dis na di say we Nusinersen de kam in. Dis dכg de εp wi bכdi fכ mek wan imכtant protin we dεn kכl SMN (Survival of Motor Neuron). dis protin de mek di nεv sεl dεm we de kכntro di mכsul dεm gεt hεlth.
Di impɔtant tin na dat Nusinersen nɔto mɛrɛsin fɔ SMA. Bɔt i kin ɛp fɔ kɔntrol aw di sik de go bifo ɛn mek di mɔsul dɛn strɔng te to sɔm mak . Dis kin rili ɛp di pɔsin in kwaliti fɔ liv.
Tin dɛm wae yu fɔ tɛl yu dɔktɔ bifo yu bigin tritmɛnt
Bifo yu bigin fɔ tek Nusinersen tritmɛnt, i impɔtant fɔ gi yu dɔktɔ wan kɔmplit diskripshɔn bɔt yu ɔ yu pikin in wɛlbɔdi kɔndishɔn. Mek shɔ se yu tɛl dɛn mɔ bɔt dɛn tin ya:
| Wɛlbɔdi kɔndishɔn ɔ chans | Wetin mek i impɔtant to di dɔktɔ? |
|---|---|
| Kidni sik | Bikɔs di kidni dɛn de involv fɔ pul Nusinersen na di bɔdi, di dɔktɔ fɔ tek tɛm mɔ if ɛni wikɛd tin de na di kidni dɛn. |
| Prɔblɛm fɔ mek blɔd klɔt, lɛk we di pletlɛt dɛn nɔ de bɔku | Sɔntɛnde dis mɛrɛsin kin afɛkt di pletlɛt kɔnt, so if yu de pan denja fɔ blɔd, yu dɔktɔ fɔ no dis bifo tɛm. |
| If yu gɛt bɛlɛ ɔ yu de tray fɔ gɛt bɛlɛ | Na smɔl data stil de bɔt aw dis mɛrɛsin kin afɛkt yu we yu gɛt bɛlɛ, so yu fɔ tɔk to yu dɔktɔ bɔt di prɔblɛm dɛn ɛn di bɛnifit dɛn we i go gɛt bifo yu disayd fɔ du sɔntin. |
| If dɛn de gi di pikin in mama in bɛlɛ | Bikɔs i nɔ klia if di mɛrɛsin de pas to di pikin tru in mama in milk, i rili impɔtant fɔ tɔk bɔt dis wit yu dɔktɔ. |
Aw dɛn kin gi dis mɛrɛsin to di bɔdi?
Dis nɔto mɛrɛsin we dɛn kin yuz na os. Nusinersen na vaysin we spɛshal pɔsin na ɔspitul ɔ klinik kin gi.
Dis nɔ tan lɛk shot we yu go gi yu na yu an ɔ yu bɔdi. i de gi insay di wata we de rawnd di spεnal kכd, insay di spεnal kכlכm. Fɔ tɔk di kɔrɛkt tin, dɛn kɔl dis injɛkshɔn insay di bɔdi . Na wan tim we gɛt dɔktɔ dɛn we tren ɛn we gɛt ɛkspiriɛns kin du dis.
Dɛn kin gi dis tritmɛnt to pipul dɛn we gɛt SMA we gɛt ɛni ej, frɔm pikin dɛn we dɛn jɔs bɔn to big pipul dɛn. Bɔt na yu dɔktɔ kin disayd fɔ du dis afta we i dɔn tek tɛm chɛk di sikman in kɔndishɔn.
Wetin yu kin du if yu mis tritmɛnt apɔntinmɛnt?
Dɛn kin gi dis tritmɛnt pan wan patikyula schedule. So , i rili impɔtant fɔ go na ɔspitul di de we dɛn dɔn sɛtul fɔ gɛt di tritmɛnt. If fɔ sɔm imejensi rizin yu nɔ ebul fɔ go di de we dɛn dɔn sɛtul, kɔl yu dɔktɔ ɔ di ɔspitul wantɛm wantɛm ɛn tɛl dɛn. Dɛn go advays yu bɔt wetin fɔ du.
Ɛni bad bad tin dɛn de we kin apin to am?
Jɔs lɛk ɛni mɛrɛsin, sɔm sayd ɛfɛkt kin apin we dɛn de trit Nusinersen. Sɔm pan dɛn tin ya na smɔl smɔl tin dɛn, bɔt ɔda wan dɛn nid spɛshal atɛnshɔn.
| Tayp fɔ di sayd ɛfɛkt | Sayn dɛn |
|---|---|
| Tin dɛn fɔ ripɔt wantɛm wantɛm to yu dɔktɔ ɔ di ɔspitul in Imejɛnsi Tritmɛnt Yunit (ETU) . | |
| Di sayn dɛn we de sho se pɔsin de blɔd |
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| Prɔblɛm dɛn na di kidni | I nɔ izi fɔ pis ɔ chenj di we aw yu de pis. |
| Tin dɛm wae nɔr kin siriɔs, bɔt dɛn fɔ ripɔt to di dɔktɔ if dɛn kɔntinyu fɔ de | |
| Kɔmɔn sayd ɛfɛkt dɛn |
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If yu gɛt ɛni ɔda kayn sik we nɔr kɔmɔn we nɔr de ya, tɔk to yu dɔktɔ bɔt am. If yu tink se pɔsin gɛt pɔyzin wit drɔgs, yu kin kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Kɔlɔmbɔ Nashɔnal Ospital .
I kin miks wit ɔda mɛrɛsin dɛn?
Nɔr ripɔt nɔr de fɔ ɔda drɔgs wae de mek pɔrsin gɛt siriɔs intarakshɔn wit Nusinersen. Bɔt fɔ mek yu de na di say we sef, tɛl yu dɔktɔ bɔt ɔl di tin dɛn we yu de tek.
- Mɛrɛsin fɔ ɔda sik dɛn
- Drug dɛn we nɔ gɛt prɛskrishɔn
- Vitamin, ɛvbɔdi, ɔ tin dɛn we dɛn kin yuz fɔ it
- Dɔn bak, tɛl di dɔktɔ bɔt fɔ smok ɛn fɔ drink rɔm.
Yu dɔktɔ go de wach yu kɔndishɔn ɔltɛm ɔl di tɛm we yu de trit yu. Yu go nid bak fɔ mek dɛn du blɔd wok ɔltɛm fɔ chɛk yu kidni fɔ wok ɛn fɔ chɛk di pletlɛt dɛn. I rili impɔtant fɔ mek yu nɔ skip dɛn tɛst ya.
Mɛsej we dɛn kin kɛr go na os
- Nusinersen na wan patikyula tritmɛnt we de ɛp fɔ kɔntrol ɛn manej di simptom dɛm fɔ Spinal Muscular Atrophy (SMA). I nɔ de mɛn di sik.
- Wan spɛshal dɔktɔ kin gi dis mɛrɛsin na ɔspitul bay we dɛn kin inj am insay di wata we de rawnd di spɛshal kɔd.
- Bifo yu bigin fɔ tek tritmɛnt, tɛl di dɔktɔ bɔt ɔl di mɛrɛsin dɛn we yu ɔ yu pikin gɛt (espɛshali prɔblɛm wit di kidni ɛn blɔd we de klɔt) ɛn ɔl di mɛrɛsin dɛn we yu de tek.
- Go to dɔktɔ wantɛm wantɛm if yu notis siriɔs sayd ɛfɛkt, lɛk sayn dɛn we de sho se yu de blɔd ɔ yu gɛt prɔblɛm wit yu pis.
- I rili impɔtant fɔ mek yu gɛt tritmɛnt di rayt tɛm ɛn mek yu du di blɔd tɛst we di dɔktɔ tɛl yu fɔ du.
- If yu gɛt ɛni ɔda kwɛstyɔn bɔt dis tritmɛnt, duya nɔ shek fɔ aks yu dɔktɔ.
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