Yu dɔn ɛva yɛri bɔt dis sik we dɛn kɔl `AL Amyloidosis`? Sɔntɛm nɔto so, nɔto so? Dis kin rili shɔt smɔl, we min se nɔto sik we kin afɛkt ɔlman. Bɔt if i apin, i kin rili siriɔs smɔl. fכ simpul wan, na chenj na wan kayn sεl we dεn kכl ``Plasma sεl`` we wi gεt na wi bכdi, εn sכm pan di protin dεm we dεn de mek de kכntrol εn dכn dכpכt insay difrεn כgan dεm na wi bכdi, we de pwεl dεm. I tan lɛk mashin we bin de wok fayn ɛn wantɛm wantɛm bigin fɔ mek di rɔng pat dɛn. Lɛ wi tɔk bɔt dis smɔl smɔl , bikɔs i rili impɔtant fɔ no bɔt dis.
Wetin rili na `AL Amyloidosis`?
dis `AL amyloidosis` na wan kayn big grup fכ sik dεm we dεn kכl `Amyloidosis`. `Amyloidosis` na wan sik we nɔ kin apin so ɔltɛm we kin apin we chenj, ɔ `myuteshɔn`, de na di `plasma sɛl dɛn` na wi bon mɛro. dis plasma sεl dεm we chenj de mek wan kayn protin we nכ nכmal. Dɛn prɔtin ya lɛk bɔl dɛn we tan lɛk trɛd, kin gɛda togɛda, ɛn put insay wi impɔtant ɔgan ɛn tisu dɛn.
insay AL amyloidosis, di kayn protin we de mεs lεk dis na di layt chen protin. Dɛn layt chen protin ya na pat pan di antibodi dɛm we wi bɔdi de yuz fɔ fɛt sik. Na di sem plasma sɛl dɛn we a bin dɔn tɔk bɔt, de mek dɛn antibodi dɛn ya.
Bɔku tɛm, AL amyloidosis kin afɛkt wi at ɛn/ɔ kidni dɛn mɔ . Bɔt sɔntɛnde, i kin afɛkt di bɛlɛ, di intestinal, di nerv, ɛn di skin.
De bεst tin na dat if dεn no dis sik kwik kwik wan εn trit am kwik , sכmtεm dεn kin mεnεj am lεk krεse sik. Bɔt if dɛn nɔ trit am, i kin mek i gɛt siriɔs prɔblɛm dɛn we kin mek i day ɛn ivin day. So dis nɔto sɔntin we wi fɔ tek am layt.
Wetin di tu lɛta dɛn `AL` we de na dis nem min?
Difrɛn kayn amyloidosis de. Dɛn gi ɛni kayn in nem to di abnɔmal prɔtin we de mek pɔsin gɛt di sik. insay AL amyloidosis, di lεta A tinap fכ amyloidosis εn di lεta L tinap fכ di protin we dεn kכl layt chen we de mek di sik. כda kayn amyloidosis we dεn no gud gud wan na AA amyloidosis (we di sεrum amyloid A protin de kכz) εn ATTR amyloidosis (we transthyretin kכz).
Aw `AL amyloidosis` de afɛkt mi bɔdi?
Fɔ tɔk am simpul wan, AL amyloidosis na sik we di plasma sɛl dɛn gɛt. Plasma sɛl dɛn na pat pan wi imyun sistɛm. Dɛn men wok na fɔ mek antibodi fɔ fɛt infɛkshɔn. Imajin se insay wi bɔdi, bɔku bɔku klon dɛn de we gɛt plasma sɛl dɛn we de mek difrɛn kayn antibodi dɛn fɔ fɛt difrɛn sik dɛn. Wan plasma sɛl de sheb ɛn mek bɔku ɔda sɛl dɛn.
insay sik dεm we involv ‘plasma sεl dεm’, wan grup pan dεn ‘plasma sεl dεm’ de sheb we dεn nכ kכntro, we de prodyuz bכku bכku di sem kayn ‘antibodi dεm’.
insay AL amyloidosis, we dεn mek antibodi dεm, dεn de mek tu protin chen dεm we dεn kכl hεvi chen εn layt chen dεm. wetin de apin ya na di plasma sεl dεm de mek tu mכch layt chen protin dεm. Dɛn layt chen dɛn ya kin misfold ɛn dɛn kin gɛda togɛda. dεn kכl dεn kכlכmp protin dεm ya amyloid fibrils. Dɛn fibril ya kin de na wi ɔgan dɛn. Na da tɛm de siriɔs damej kin bigin fɔ apin to dɛn ɔgan dɛn de, sɔntɛnde te dɛn kin mek dɛn layf de pan denja.
Udat kin gɛt dis sik pas ɔlman?
Amyloidosis na wan sik we nɔ kin bɔku. Dɛn se i kin afɛkt bitwin 9 ɛn 14 pipul dɛn pan ɛvri milyɔn na Amɛrika ɛn bitwin 5 ɛn 12 pipul dɛn pan ɛvri milyɔn na ɔda say dɛn na di wɔl. AL amyloidosis kin kכmכn sכmtεm pan man dεm pas uman dεm. I kin afɛkt pipul dɛm bak wae dɔn pas 60. De avrej ej wae dɛn kin gɛt fɔ no bɔt dis sik na lɛk 64 ia.
Wetin na di simptom dɛm fɔ `AL amyloidosis`?
`AL amyloidosis` kin afekt nכto כnli di כgan dεm na wi bכdi, frכm di ed to di fut, bכt di limb dεm bak. Bɔrku tɛm, de sayn dɛm fɔ dis sik kin tan lɛk de sayn dɛm fɔ ɔda sik dɛm wae nɔr kin siriɔs. Dɔn bak, di sayn dɛn kin apia smɔl smɔl . So yu nɔ go notis chenj na yu bɔdi wantɛm wantɛm.
Di sayn dɛm wae gɛt fɔ du wit di ed ɛn nɛk:
- Yu kin fil diziz ɔ laythɛd (`lightheadedness`) we yu grap?
- Yu gɛt pepul kɔlɔ rash rawnd yu yay ɔ na yu yaylid?
- Yu tong de fil big pas aw i nɔmal ?
Di sayn dɛm wae gɛt fɔ du wit di an ɛn fut:
Di an dɛn kin gɛt dɛn kwaliti ya:
- Yu kin gɛt tingling, bɔn, ɔ priklin na yu an? Dis kin bi di simptom dɛm fɔ wan sik we dɛn kɔl ``Peripheral Neuropathy``.
- Yu de gɛt tingling ɛn numbness na yu finga dɛn? Dis kin bi di simptom dɛm fɔ ``Carpal Tunnel Syndrome``.
Di sayn dɛm na di leg ɛn fut kin bi:
- Yu leg ɔ yu fut dɔn swel ?
- Yu leg dɛn kin fil se yu nɔ gɛt layf ?
Apat frɔm dat, yu go notis se yu kin brus izi wan , yu kin blɔd izi wan, ɔ yu kin gɛt pepul kɔlɔ na yu skin usay wrinkles de.
Di sayn dɛm wae de sho se yu gɛt prɔblɛm wit yu at ɛn lɔng:
De sayn dɛm wae de dɔŋ ya kin bi sayn dɛm bak fɔ ɔda sik dɛm, bɔt tek tɛm:
- At palpitations: Na filin lɛk se di at de bit ɛn de rɔn.
- Short brith (dyspnea): Na filin fɔ tayt na yu chɛst, lɛk se yu nɔ ebul fɔ tek dip briz.
- Chɛst pen : Pen ɛnisay na di chɛst. Dis pen kin shap, dull, ɔr kam ɛn go. Chɛst pen kin bi sayn bak fɔ hat atak, so if yu gɛt chɛst pen we de te pas fayv minit ɛn nɔ de go wit rɛst ɔ mɛrɛsin, kɔl 911 wantɛm wantɛm ɔ mek sɔmbɔdi kɛr yu go na ɔspitul.
- Taya : Fɔ fil so taya dat yu nɔ ebul fɔ ivin du yu wok dɛn we yu de du ɛvride, lɛk se yu nɔ gɛt ɛni ɛnaji we lɛf na yu bɔdi.
Di sayn dɛm wae de sho se yu gɛt prɔblɛm wit yu bɛlɛ ɔ yu intestinal:
AL amyloidosis kin afɛkt yu it abit bak. Di sayn dɛm kin bi:
- Poor appetite : Ɔlman in apɛtit kin chenj wan wan tɛm. Bɔt if yu nɔ want fɔ it fɔ sɔm dez we yu nɔ gɛt ɛni rizin, i kin bi sayn fɔ wan prɔblɛm we gɛt fɔ du wit yu intestinal we gɛt fɔ du wit AL amyloidosis.
- Blɔt ɔ gas pasmak : Blɔt ɛn gas na tin dɛn we kin apin, bɔt sɔntɛnde i kin mek pɔsin shem. Bɔt if yu gɛt gas we de kɔntinyu fɔ de, i kin bi sayn fɔ yu bɛlɛ prɔblɛm we gɛt fɔ du wit AL amyloidosis.
- Kɔnstipɛshɔn : Kɔnstipɛshɔn na fɔ gɛt smɔl pas tri bɔdi muvmɛnt insay wan wik. If yu gɛt kɔnstipɛshɔn fɔ pas tri wik, na prɔblɛm we yu fɔ tɔk to yu dɔktɔ bɔt.
- Daya : Na stɔl we gɛt wata. If dayarɛa kɔntinyu, yu fɔ tɛl yu dɔktɔ bak.
Di sayn dɛm wae de sho se yu gɛt prɔblɛm wit yu kidni ɔ blad:
Yu kin notis se yu urine de luk chenj ɔ aw ɔltɛm yu nid fɔ pis. Dɛn sayn ya kin bi:
- Yu kin si mɔ bɔbul dɛn na yu urine pas aw yu kin si am?
- Yu de pis smɔl pas aw yu kin pis, ɔ yu fɔ grap na nɛt fɔ pis ?
Wetin kin mek pɔsin gɛt AL amyloidosis?
Wi don tok abaut dis likl bit bifo. `AL amyloidosis` de kכz fכ `plasma sεl dεm` we de mek `antibodi`, protin dεm we dεn kכl `hεvi chen` εn `layt chen`, we dεn mek dεn `layt chen` protin dεm we pasmak. dis `layt chen dεm` de misfold, kכlכp tכgeda, εn fכm `amyloid fibrils` we de afta dat de dכpכsit insay wi כgan dεm. Na da tɛm de di prɔblɛm dɛn kin bigin.
Aw dɔktɔ dɛn kin no se yu gɛt AL amyloidosis?
Dɔktɔ dɛn kin yuz sɔm tɛst fɔ no if pɔsin gɛt AL amyloidosis. Di tɛst we impɔtant pas ɔl na fɔ tek smɔl sampul pan di tisu ɔ ɔgan we dɛn tink se di sik dɔn afɛkt. Dɛn kɔl dis bayɔpsi. Dɛn kin sheb di bayɔpsi dɛn lɛk dis:
- bon mכro bayopsi : Dis involv fכ tek sכm sכm sεmpl fכ di bon mכro insay wan bon.
- Kidni bayɔpsi : Dɛn kin tek sɔm smɔl smɔl pat pan di kidni tisu.
- Hat biopsy : Dɛn kin tek sɔm smɔl smɔl pat dɛn na di at mɔsul.
- Fat pad biopsy : Dɛn kin tek smɔl pat pan di fat tisu frɔm di bɛlɛ. Dis na tɛst we nɔ rili izi fɔ du.
Ɔda tɛst dɛn we dɛn kin du
Yu dɔktɔ kin du ɔda tɛst fɔ si aw yu ɔgan dɛn de wok fayn. Dɛn tin ya kin bi:
- Blɔd tɛst : Dɛn kin du dɛn tin ya fɔ chɛk aw yu kidni, at, ɛn liva de wok, ɛn fɔ chɛk ɔmɔs layt chen dɛn de na yu blɔd.
- Urine test : Dis na 24 awa urine collection test. Yu kin gɛda yu urine na os ɛn briŋ di sampul to yu dɔktɔ. Dis tɛst de chɛk fɔ si if yu kidni dɛn gɛt amyloidosis.
- Ilɛktrokardiogram (ECG): ECG de mɛzhɔ di ilɛktrik wok we di at de du.
- Echocardiogram : Sɔntɛnde dɛn kin kɔl am ɔltra saund fɔ di at, dis kin yuz ay frikshɔn sawnd wev fɔ no aw di at de muv.
- Cardiac MRI (Cardiac Magnetic Resonance Imaging) : Dis tɛst kin tek rili klia, ditayla pikchɔ dɛn bɔt di at.
Aw dɛn kin trit AL amyloidosis?
Dɔktɔ dɛn kin trit AL amyloidosis fɔ ridyus yu simptom dɛm, kɔntrol di ɔgan dɛm we de pwɛl, ɛn slo ɔ stɔp di bild-ap fɔ abnɔmal amyloid protin dɛm.
Dɔktɔ dɛn kin trit AL amyloidosis wit kemotɛrapi, imyunotɛrapi, ɔ stɛroyd. Dɛn kin gi bɔku pipul dɛn wan ɔ tu kemotɛrapi mɛrɛsin, bɔku tɛm dɛn kin gi dɛn wit stɛroyd. Dɛn drɔgs ya kin wok togɛda fɔ pwɛl di plasma sɛl dɛn we de mek di layt chen protin dɛn.
i imכtant fכ no se pan כl we dεn dכg ya kin stכp כ slo di prכgreshכn fכ AL amyloidosis, dεn nכ kin pul di amyloid fibril dεm we dεn כlrεdi bכlכp na yu כgan dεm. Wae di tritmɛnt bigin, yu yone imyun sistɛm kin pul dɛn abnɔmal prɔtin ya smɔl smɔl. Risach pipul dεm de luk bak fכ nyu monoklonal antibodi dεm we kin pul dεn fibril dεm ya.
Yu dɔktɔ go tɔk to yu bak bɔt if yu kin bɛnifit frɔm ``bon mɛrɔ transplant`` ɔ ``stem sɛl transplant.`` Pan ɔl we dɛn tritmɛnt ya na mɔ kɔmplikɛt tritmɛnt, dɛn kin rili saksesful fɔ sɔm pipul dɛm.
di divεlכpmεnt fכ `AL amyloidosis` kin bכn?
Bɔt i sɔri fɔ no se, nɔto so. Nɔ we nɔ de fɔ mek dɛn nɔ gɛt AL amyloidosis ɔ ɛni ɔda kayn amyloidosis. AL amyloidosis de apin we wan plasma sεl de bi abnכmal εn bigin fכ divayd we dεn nכ kכntro. Dis nɔto sɔntin we wi go ebul fɔ kɔntrol.
Aw lɔŋ yu kin liv wit `AL amyloidosis`?
Naw, dɔktɔ dɛn de ɛp pipul dɛn we gɛt AL amyloidosis fɔ liv lɔng. Fɔ sɔm, AL amyloidosis na wan sik we kin te, ɔ we kin te, we dɛn kin ebul fɔ kɔntrol wit mɛrɛsin. Bɔt i impɔtant fɔ mɛmba se dis na sik we rili siriɔs ɛn i kin mek pɔsin gɛt sik dɛn we de mek pɔsin in layf de pan denja.
Bikɔs AL amyloidosis na sik we nɔ kin bɔku, i nɔ kin izi fɔ mek dɔktɔ dɛn no aw lɔng pɔsin we gɛt dis sik kin liv. If yu gɛt AL amyloidosis, aks yu dɔktɔ bɔt yu prɔgnosis afta tritmɛnt. Yu dɔktɔ kin gi yu di bɛst infɔmeshɔn bɔt wetin fɔ ɛkspɛkt.
Aw a kin kia fɔ misɛf?
If yu gɛt AL amyloidosis, yu dɔktɔ go pe atɛnshɔn mɔ fɔ trit yu sik dɛn ɛn fɔ stɔp ɔ slo di sik fɔ go bifo. Yu go nid fɔ kɔntinyu fɔ tek mɛrɛsin, ɛn dɛn tritmɛnt dɛn de kin gɛt bad bad tin dɛn. Wan we aw yu go tek kia ɔf yusɛf na fɔ lan bɔt di bad tin dɛn we de apin to yu tritmɛnt dɛn ɛn aw fɔ mɛn dɛn. Na sɔm ɔda advays dɛn ya:
- Sɔm tritmɛnt dɛn kin afɛkt di we aw yu want fɔ it.If na so, aks yu dɔktɔ bɔt aw fɔ it fayn we go ɛp yu fɔ gɛt trɛnk we yu de trit yu. Fɔ it tin dɛn we gɛt balans rili impɔtant.
- Tray fɔ rɛst bɔku tɛm . Rɛst impɔtant fɔ di bɔdi we yu de fɛt sik lɛk dis.
- Ɛksesaiz na fayn we fɔ mek yu maynd gladi ɛn ɛp yu fɔ gɛt wɛlbɔdi wet. Bɔt aks yu dɔktɔ fɔ advays yu bɔt ɛksesaiz we nɔ go mek yu bɔdi strɛs tumɔs.
- Bikɔs AL amyloidosis na sik we nɔ kin bɔku, yu kin fil se yu wangren de ɛn yu kin fil se yu nɔ de nia ɔda pipul dɛn . Ɔda pipul dɛn nɔ kin ɔndastand di sik. Aks yu dɔktɔ bɔt sɔpɔt grup ɔ program fɔ pipul dɛn we gɛt AL amyloidosis. We yu de tɔk to pipul dɛn lɛk dat, dat kin mek yu gɛt bɔku trɛnk.
Fɔ dɔn, sɔm impɔtant pɔynt dɛn (Take-Home Message) .
AL amyloidosis (Amyloid layt chen ɔ praymari amyloidosis) na sik we nɔ kin apin so ɔltɛm we di layt chen protin dɛn we nɔ de na di bɔdi de put insay di ɔgan ɛn tisu dɛn na wi bɔdi. I kin bi wan sik we rili siriɔs , sɔmtɛm dɛn kin mɛn am as sik we nɔ de mɛn, bɔt i kin mek pɔsin gɛt prɔblɛm dɛn bak we kin mek pɔsin in layf de pan denja.
Bɔt nɔ wɔri, dɔktɔ dɛn de fɛn nyu we fɔ ɛp pipul dɛn we gɛt AL amyloidosis fɔ liv lɔng ɛn bɛtɛ layf. If yu gɛt AL amyloidosis, aks yu dɔktɔ bɔt nyu klinik trial ɛn risach fɔ trit di sik. Fɔ no am kwik kwik wan ɛn fɔ trit am na di men tin. I impɔtant bak fɔ mek yu gɛt gud maynd ɛn fala yu dɔktɔ in advays.
` AL amyloidosis, praymari amyloidosis, plasma sεl dεm, layt chen protin dεm, amyloid fibrils, kidni sik, at sik
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