Sɔntɛnde, fɔ go to dɔktɔ kin rili strɛs. E kin fil lɛk se tɛm nɔ de fɔ aks ɔl wi kwɛstyɔn ɛn tin dɛn we de mɔna wi. dis na tru spεshal we i kam pan komplεks, rare kכndishכn dεm lεk hATTR amyloidosis. So, i impɔtant fɔ mek yu pripia wan list fɔ di kwɛstyɔn dɛn we yu want fɔ aks bifo yu go to yu dɔktɔ. Dis go ɛp yu fɔ no ɔltin we yu nid fɔ no ɛn gɛt di tritmɛnt we go fayn fɔ yu.
Fɔs, lɛ wi no gud gud wan bɔt dis sik.
Fɔ ɔndastand yu sik rili impɔtant fɔ yu tritmɛnt, so nɔr shem fɔ aks dɛn kwɛstyɔn ya.
Wetin a fɔ trit fɔ mi sik dɛn?
Tɛl yu dɔktɔ bɔt ɔl di sayn dɛn we yu gɛt . Yu kin tink se sɔm pan dɛn nɔ gɛt natin fɔ du wit hATTR. Bɔt i impɔtant fɔ tɛl dɛn ɔl. Dɔn yu dɔktɔ kin tɛl yu aw fɔ trit dɛn sik ya ɛn us sayn dɛn fɔ put fɔs. Dɔn bak, if yu de tek difrɛn mɛrɛsin fɔ ɛni sik, dɛn kin ɛksplen aw di mɛrɛsin dɛn kin afɛkt dɛnsɛf (drug interactions).
Us stej mi sik de insay?
Fכ men stej dεm de fכ hATTR sik.
- Stej 0: Nɔ gɛt ɛni sayn.
- Stej I: Na smɔl sayn dɛm, bɔt yu kin waka.
- Stej II: Fɔ waka nid fɔ ɛp, ɛn mɔ prɔblɛm dɛn kin apin ɔlsay na di bɔdi .
- Stej III: I nid fɔ yuz wilchia ɔ fɔ de na bed, ɛn siriɔs prɔblɛm dɛn we kin apin to pɔsin we i de fil, in motoka, ɛn nyurolɔjik prɔblɛm dɛn kin apin ɔlsay na di bɔdi.
We di dɔktɔ no us stej yu de, dat kin mek i izi fɔ mek di dɔktɔ plan di tritmɛnt fɔ am.
Us ɔgan dɛn na mi bɔdi dis dɔn afɛkt?
hATTR na wan sik we pɔsin kin gɛt frɔm in mama ɛn papa. insay dis kכndishכn, wan protin we dεn kכl transtayrεtin de misfold εn kכlכm tכgeda fכ fכm amyloid dεposit insay כgan dεm. Tεst kin no if amyloid dεposit dεm de na yu at כ כda כgan dεm. Dis infɔmeshɔn impɔtant bikɔs di tritmɛnt we yu go gɛt go dipen bɔku tɛm pan di kayn amyloid ɛn di ɔgan dɛn we i de insay .
Yu tink se dɛn fɔ du tɛst fɔ mi famili bak?
Bikɔs dis na sik we pɔsin kin gɛt frɔm in mama ɛn papa, afta dɛn dɔn no se yu gɛt dis sik, yu kin want fɔ no if ɛni ɔda pɔsin na yu famili gɛt am. If yu gɛt pikin dɛn, yu kin tink bɔt fɔ tɛst dɛn bak fɔ di jin. Tritmεnt de mכr saksesful if dεn dεtekt hATTR εli.So, we yu no bɔt dis, dat go mek yu gɛt di chans fɔ ɛp ɔda pɔsin na yu famili.
Wetin na di sayn dɛm wae kin mek yu nid fɔ go na ɔspitul kwik kwik wan?
Pan ɔl we hATTR kin mek yu gɛt difrɛn sayn dɛm, i impɔtant fɔ no wetin fɔ du we tin apin. So, mek shɔ se yu aks yu dɔktɔ se, "Us simptom a fɔ go to di Imejɛnsi Dipatmɛnt (ETU) fɔ wantɛm wantɛm?"
Tin dɛm fɔ aks bɔt yu tritmɛnt
If yu ɔndastand di we aw dɛn de trit am klia wan, yu go avɔyd fɔ fred ɛn dawt we nɔ impɔtant.
Aw a go disayd us tritmɛnt we fayn fɔ mi?
Yu dɔktɔ go tɛl yu fɔ trit yu bay di stej we yu sik de ɛn di sayn dɛm we yu gɛt. Na mɔ, i go chɛk fɔ si if yu gɛt prɔblɛm wit yu nerv (polyneuropathy), lɛk we yu nɔ de fil fayn, yu wik, ɔ yu gɛt inflamɛns na yu tu say dɛn na yu bɔdi, ɔ yu gɛt prɔblɛm wit yu at mɔsul dɛn (cardiomyopathy). Sɔm pipul dɛn kin gɛt dɛn tu tin ya. Dis go ɛp fɔ mek wan tritmɛnt plan we go spɛshal fɔ yu. If yu dɔn ɔlrɛdi de gɛt tritmɛnt, aks, "Yu want fɔ kɔntinyu wit dis tritmɛnt ɔr yu nid fɔ mek chenj?"
Ɛni nyu mɛrɛsin de we go fayn fɔ mi?
As mɛrɛsin sayɛns de go bifo, nyu tritmɛnt dɛn de kam bak fɔ dis sik. Bɔku nyu mɛrɛsin dɛn dɔn kam na di makit insay di las sɔm ia. Difrɛn mɛrɛsin dɛn de we fayn fɔ difrɛn stej dɛm fɔ di sik. So, dipen pan di stej we yu de, aks yu dɔktɔ if nyu tin dɛn de we yu kin tray fɔ du.
Wetin a fɔ ɛkspɛkt frɔm dɛn tritmɛnt ya?
No na pawa. If yu no bifo tɛm bɔt di bad tin dɛn we kin apin to yu ɛn di prɔblɛm dɛn we di tritmɛnt we yu de kam fɔ gɛt, dat go mek yu gɛt trɛnk fɔ bia wit dɛn ɛn nɔ wɔri.
Aw lɔng dis tritmɛnt go tek?
Nɔr mɛrɛsin nɔr de fɔ hATTR, so tritmɛnt kin de fɔ ɔl yu layf. Bɔt yu dɔktɔ go ebul fɔ gi yu rough idea bɔt aw lɔng yu go nid tritmɛnt, bay di stej we yu gɛt di sik, di sayn dɛm, ɛn ɔda tin dɛm.
Wetin na di sayd ɛfɛkt dɛn we dɛn mɛrɛsin ya kin gɛt?
Dis kin difrɛn frɔm wan tritmɛnt to ɔda tritmɛnt. Fɔ ɛgzampul, wan mɛrɛsin we dɛn kɔl `inotersen (Tegsedi)` nɔ kin bi di fɔs opshɔn bikɔs i kin mek pɔsin gɛt siriɔs sayd ɛfɛkt. Bɔt dɛn nɔ sho se drɔgs lɛk `tafamidis (Vyndamax, Vyndaqel)` gɛt impɔtant sayd ifɛkt pan pasɛnt dɛn we gɛt `cardiomyopathy` insay trayal. We yu dɔktɔ gi yu wan mɛrɛsin, mek shɔ se yu aks bɔt di bad tin dɛn we kin apin to yu.
Us tɛst dɛn a fɔ dɔn du tumara bambay?
Dis sik kin go bifo as tɛm de go, mɔ if dɛn nɔ trit am. So yu go nid fɔ du tɛst ɔltɛm fɔ no aw di sik de go bifo. Fɛn ɔl di tɛst dɛn we yu fɔ du ɛn ustɛm yu fɔ du.
Aw a go no if dis tritmɛnt dɔn wok fayn?
Di mɛdikal tim we de trit yu go si yu ɔltɛm. Dɛn go yuz tɛst fɔ wach di sik, ɛn dɛn go aks yu fɔ tɛl dɛn bɔt yu sayn dɛm fɔ si if di tritmɛnt de woke.
Aw yu kin kɔdinɛt spɛshal dɔktɔ dɛn ɛn ɔda tin dɛn?
Bikɔs dis sik kin afɛkt bɔku ɔgan dɛn na di bɔdi, yu go nid fɔ go to bɔku spɛshal pipul dɛn.
| Spɛshal dɔktɔ | Eria we di inflɔwɛns de |
|---|---|
| Wan dɔktɔ we de mɛn di at | Prɔblɛm dɛn we gɛt fɔ du wit at |
| Wan dɔktɔ we de mɛn blɔd | Prɔblɛm dɛn we gɛt fɔ du wit blɔd |
| Nyurolɔjis | Prɔblɛm dɛn na di bren ɛn di nerv dɛn |
| Gastroenterɔlɔjis we de mɛn di bɔdi | Dijestiv trakt ɛn liva prɔblɛm |
| Wan dɔktɔ we de mɛn kansa | Bikɔs amyloidosis kin gɛt fɔ du wit kansa kɔndishɔn |
| Jɛnɛtik Kɔnsɔla | Fɔ advays bɔt di jenɛtik inflɔwɛns we dɛn kin pas tru jɛnɛreshɔn ɛn di prɔblɛm dɛn we kin apin to di famili |
Aw dɛn kin kɔdin di tritmɛnt bitwin dɛn dɔktɔ ya?
Bikɔs yu go de si bɔku difrɛn dɔktɔ dɛn, i impɔtant fɔ mek dɛn ɔl wok as wan tim, fɔ sheb infɔmeshɔn wit dɛnsɛf. Yu kin ebul fɔ gɛt tritmɛnt na wan amyloidosis sɛnta, usay ɔl dɛn spɛshal pipul ya de na di sem ɔspitul. If nɔto so, mek shɔ se yu aks, "Aw dɛn go sheb infɔmeshɔn bitwin dɛn dɔktɔ ya? Dɛn go sheb mi tɛst rizɔlt bitwin ɔlman, ɛn dɛn go disayd wetin bɛtɛ fɔ mi?"
Udat a fɔ aks bɔt mi mɔni ɛn inshɔrans?
Yu kin nid bɔku mɛrɛsin fɔ dis. So, aks yu dɔktɔ, nɔs, ɔ ɔspitul administreta, "Mi inshɔrans go kɔba dɛn kɔst ya? Udat a fɔ tɔk to bɔt dis?" If yu nid mɔni fɔ ɛp yu, aks bɔt pipul dɛn we go ɛp yu wit dis.
Mɛsej we dɛn kin kɛr go na os
- Bifo yu go to dɔktɔ, mek wan list fɔ di kwɛstyɔn dɛn we yu want fɔ aks. Dis go rili ɛp yu.
- Tɛl yu dɔktɔ ɔnɛs wan bɔt ivin di smɔl smɔl sayn we yu de gɛt, ɛn nɔ ayd am.
- No klia wan di stej we yu sik de ɛn us ɔgan dɛn de afɛkt.
- Tɔk bɔt if ɔda pipul dɛn na di famili sɛf nid fɔ tɛst dɛn jɛnɛtiks.
- Aks gud wan bɔt di we aw dɛn de trit am, di bad tin dɛn we dɛn kin du, ɛn aw fɔ no if di tritmɛnt dɔn wok fayn.
- Aks aw yu tritmɛnt go kɔdinɛt bitwin difrɛn spɛshal pipul dɛm.
- Nɔ ɛva fred fɔ tɔk bɔt di kɔst fɔ tritmɛnt ɛn fɔ ɛp yu wit mɔni.
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