Sɔntɛnde, as mama ɛn papa, wi kin rili wɔri bɔt di smɔl smɔl chenj dɛn we wi pikin dɛn kin chenj, nɔto so? Imajin if yu smɔl pikin nɔ de ol in nɛk stret lɛk ɔda pikin dɛn, nɔ rol oba fayn, ɔ nɔ sidɔm, i nɔmal fɔ mek yu fil wɔri smɔl. Sɔntɛnde, di tin we kin mek dɛn tin ya kin apin na Spinal Muscular Atrophy , ɔ SMA fɔ shɔt tɛm. Tide wi de tɔk bɔt Spinraza, wan mɛrɛsin we dɛn kin yuz ɔlsay na di wɔl as tritmɛnt fɔ dis SMA sik.
Fɔ tɔk am simpul wan, wetin na Spinal Muscular Atrophy (SMA)?
Spinal Muscular Atrophy (SMA) na wan sik we pɔsin kin gɛt frɔm in jɛnɛtiks . I min se dɛn kin pas am frɔm wan jɛnɛreshɔn to ɔda jɛnɛreshɔn. Wetin kin apin pan dis na we di mɔsul dɛn na wi bɔdi, dat na di mɔsul dɛn kin wik smɔl smɔl. Dis wikɛd tin kin mek i nɔ izi fɔ pikin fɔ kip in nɛk stret, sidɔm fɔ insɛf, waka, ɛn insay sɔm bad bad tin dɛn, ivin simpul tin dɛn lɛk fɔ swɛla ɛn blo.
Bɔku kayn dis sik de, dɛn kin sheb am akɔdin to di ej we di sayn dɛn kin bigin fɔ sho.
- Infantile-onset SMA: We di simptom dεm de sho pan pikin we rili yכng (bifo 6 mכnt).
- Juvenile/Leta-onset SMA: If di simptom dεm de sho we i pikin (afta 6 mכnt).
- SMA we kin bigin frɔm big pipul: If di sayn dɛn kin apin afta pɔsin dɔn big.
We i kam pan dis sik, Spinraza na rili impɔtant tritmɛnt fɔ dis. Lɛ wi tɔk bɔt am ditayli naw.
Aw dɛn kin gi Spinraza (Nusinersen) tritmɛnt?
Spinraza nɔ de gi as rɛgyula shot. Dɛn kin gi am as injɛkshɔn we dɛn kin put insay di bɔdi . Fɔ tɔk am simpul wan, dɛn kin put am dairekt insay di spɛshal wata we de insay yu spayna. Na dɔktɔ dɛn nɔmɔ we gɛt spɛshal trenin fɔ du dis. So, dɛn kin du dis tritmɛnt na spɛshal tritmɛnt sɛnta na ɔspitul. Dis prɔses kin tek sɔm awa.
we di tritmεnt bigin, dεn kin gi fכ doz dεm, we dεn kכl "loading doses," na klos intaval.
1. Dɛn kin gi di fɔs tri dos dɛn ɛvri 14 dez.
2. Dɛn kin gi di nɔmba 4 doz 30 dez afta di tɔd doz.
Afta dɛn 4 dos dɛn de, dɛn kin kɔntinyu fɔ trit dɛn wit wan doz ɛvri 4 mɔnt .
Sɔmtɛm dɛn kin du yu blɔd ɛn urine tɛst bifo dɛn gi yu dis mɛrɛsin.Yu dɔktɔ kin gi yu sɔm doz dɛn. Dis na fɔ si if di mɛrɛsin de du ɛnitin. Bɔt na yu dɔktɔ nɔmɔ go disayd ɔmɔs tɛm dɛn go gi yu di tritmɛnt, wetin na di doz, ɛn us tɛst yu nid fɔ du.
Di tin we impɔtant pas ɔl na fɔ nɔ ɛva mis di tritmɛnt ɛn tɛst we yu bin dɔn plan fɔ du lɛk aw yu dɔktɔ tɛl yu fɔ du.
Wetin na di tin dɛn we kin kɔmɔt frɔm dis mɛrɛsin?
Dɛn dɔn du tu big stɔdi fɔ no aw di Spinraza drɔg de wok fayn: wan pan pikin dɛn we rili yɔŋ (infantile-onset), ɛn di ɔda wan pan big pikin dɛn (leta-onset).
Insay dɛn stɔdi ya , dɛn bin gi sɔm pan di pikin dɛn di mɛrɛsin we dɛn kɔl Spinraza. Dɛn bin gi di ɔda grup wan lay lay we fɔ du tin . Dis min se dɛn nɔ bin rili injɛkt dɛn wit di drɔg, bɔt dɛn bin jɔs chuk dɛn wit smɔl nidul. Dɛn kin du dis fɔ no di tru tin we di mɛrɛsin de du.
Di tin dɛn we kin apin kin rili ɛnkɔrej wi.
- Insay wan stɔdi we dɛn du pan yɔŋ bebi dɛn: Klose to af pan di pikin dɛn we gɛt Spinraza sho se dɛn dɔn impɔtant pan di maylston dɛn we dɛn kin muv, we nɔbɔdi pan di pikin dɛn we gɛt di plasɛbo nɔ sho ɛni impɔtant tin.
- Insay di big pikin dɛn stɔdi: Afta 15 mɔnt, 57% pan di pikin dɛn we bin gɛt Spinraza bin gɛt bɛtɛ mɔsul wok, we yu kɔmpia am wit 26% nɔmɔ pan di wan dɛn we bin gɛt di plasɛbo.
Dis de sho aw bɔku difrɛns dis tritmɛnt kin mek na di layf fɔ di wan dɛn we gɛt SMA. Bɔt mɛmba se dɛn tin ya na tin dɛn we dɛn dɔn du fɔ du risach, ɛn di tin dɛn we yu pikin kin du kin difrɛn. Yu dɔktɔ na di bɛst pɔsin fɔ ɔndastand dis.
Spinraza sayd ɛfɛkt ɛn siriɔs risk dɛn
Lɛk ɛni mɛrɛsin, Spinraza kin mek yu gɛt sayd ɛfɛkt. Dɛn tin ya kin difrɛn smɔl fɔ di ej we di sik bigin.
| Tɛm we di sayn dɛn kin bigin | Kɔmɔn sayd ɛfɛkt dɛn |
|---|---|
| Infantil-onset | infεkshכn dεm we de na di lכw rεspiretכri trakt (e.g. lכng infεkshכn) εn kכnstipeshכn. |
| Leta-we i bigin | Fiva, ed pen, vɔmit ɛn bak pen. |
Tips fɔ manej di kɔmɔn sayd ɛfɛkt dɛm
- Fɔ ed we de at: Slip fayn, it di rayt tɛm, ɛn drink bɔku wata.
- Fɔ mek yu gɛt kɔnstipɛshɔn: It mɔ frut, vɛjitebul, ɛn it dɛn we gɛt fayv, ɛn drink bɔku wata.
- Fɔ mek yu nɔ gɛt di sik: Was yu an ɔltɛm ɛn nɔ tɔch yu fes.
Pan ɔl we dɛn tin ya na kɔmɔn sayd ɛfɛkt, if dɛn kɔntinyu ɔ i tan lɛk se dɛn bad, mek shɔ se yu tɛl yu dɔktɔ.
Tek tɛm bad bad wan, siriɔs risk dɛn!
Yu fɔ no bɔt tu prɔblɛm dɛn we rili rare, bɔt we rili siriɔs, we gɛt fɔ du wit Spinraza.
| Denja | Simptom dɛm fɔ wach fɔ |
|---|---|
| Risk fɔ mek yu blɔd kɔmɔt (Blɔd Risk - Lɔw Plɛtlɛt) |
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| Kidni dɛn we dɔn pwɛl (Kidni Damej) . |
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I rili impɔtant:If yu ɔ yu pikin gɛt ɛni wan pan di siriɔs sayn dɛn we wi dɔn tɔk bɔt, tɛl yu dɔktɔ wantɛm wantɛm ɔ go to di ɔspitul we de nia yu in Imejɛnsi Dipatmɛnt (ETU). Dis nɔto sɔntin we wi fɔ delay.
Mɛsej we dɛn kin kɛr go na os
- Spinal Muscular Atrophy (SMA) na wan sik we de kam wit jεnεtiks we de mek di mכsul dεm wik.
- Spinraza (Nusinersen) na tritmɛnt wae dɛn kin yuse fɔ dis sik wae kin ɛp fɔ mek di mɔsul dɛn wok fayn fayn wan.
- Dis tritmɛnt na spɛshal dɔktɔ de gi am, tru wan injɛkshɔn insay di spɛshal wata.
- Kɔmɔn sayd ɛfɛkt lɛk ed pen ɛn fiva kin apin. Bɔt, fɔ no ɔltɛm bɔt siriɔs sayn dɛm lɛk fɔ blɔd pasmak ɔ fɔ pwɛl yu kidni.
- Fɔ fala yu dɔktɔ in instrɔkshɔn dɛn di rayt we. Nɔ mis di apɔntinmɛnt we dɛn dɔn sɛtul fɔ gɛt tritmɛnt ɛn tɛst.
- Tɔk bɔt ɛni kwɛstyɔn we yu gɛt bɔt di tritmɛnt, di sayd ɛfɛkt dɛm, ɛn di kɔst dɛm wit yu spɛshal pɔsin we de trit yu.
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