Yu an ɛn yu fut dɛn jɔs de swɛt? Ɔ yu kin fil ful ivin afta yu it smɔl it, ɔ yu kin gɛt strenj we yu bɛlɛ nɔ kin fil fayn? Sɔmtɛm wi kin tink se dɛn tin ya na nɔmal tin, bɔt biɛn dɛn tin ya kin gɛt wan sik we rili siriɔs, bɔt we nɔ kin apin so ɔltɛm we nɔbɔdi nɔ kin tɔk bɔt. Tide wi go tɔk bɔt dis kayn sik, we de pas frɔm jɛnɛreshɔn to jɛnɛreshɔn , ɛn we de wɔs smɔl smɔl. Dat na wan sik we dɛn kɔl hATTR Amyloidosis.
Fɔ tɔk am simpul wan, wetin na hATTR Amyloidosis?
Di ful nem fɔ dis na Hereditary Transthyretin Amyloidosis. Wi go kol am hATTR fo shot. Dis na sik wae nɔr kin bɔrku wae kin kam wit am, dat min se i kin pas tru di jin dɛm.
Imajin, wi bɔdi in liva de mek wan spɛshal prɔtin we dɛn kɔl transtayrɛtin (TTR) . Insay pɔsin we gɛt wɛlbɔdi, dis prɔtin de du in wok ɛn afta dat i kin lɔs. כltu, insay pכsin we gεt hATTR sik, bikoz fכ wan mכtεshכn na wan jin, dis TTR protin de prodyuz insay di rכng shep. I tan lɛk tɔys we dɛn mek fayn fayn wan we de fɔdɔm.
dis protin dεm we nכ fold fayn kin kam togεda εn mek sכm sכm sכm kכlכm dεm. Wi kin kɔl dɛn prɔtin klɔmp ya amilɔyd . dis amyloid dεm kin bigin fכ de na difrεn pat dεm na wi bכdi, spεshal wan na כgan dεm lεk nεv dεm, at, εn kidni dεm. Lɛk dɔti we kin stɔp na wata paip, dɛn prɔtin dɛn ya kin bigin fɔ pwɛl dɛn ɔgan dɛn de. Dis kin mek yu gɛt siriɔs prɔblɛm dɛn ɛn ivin mek yu layf de pan denja. Bɔt di gud nyus na dat, gud tritmɛnt dɛn de naw fɔ kɔntrol dɛn sik ya.
Yu dɔktɔ kin jɔs kɔl am "Amyloidosis," bikɔs hATTR na wan kayn grup fɔ sik dɛn we dɛn kɔl dat.
Wetin na di poshubul simptom dɛm fɔ hATTR sik?
Bikɔs dis sik kin afɛkt bɔku pat na di bɔdi, di sayn dɛm kin rili difrɛn. Sɔmtɛm dɛn sayn ya kin tan lɛk ɔda sik wae kin kam pan pɔrsin, so e kin tranga fɔ no bɔt de sik.
I kin mɔs afɛkt di nervɔs sistɛm. we dεn protin dεm ya de bכku na di nεv dεm we de kכmכt frכm di bren to di כda pat dεm na di bכdi, wi kin kכl dis kכndyush כn Polyneuropathy . So yu kin gɛt tin dɛn lɛk dis.
| Sistɛm we dɛn afɛkt | Sɔm sayn dɛn we kin apin |
|---|---|
| Nɛvɔs Sistɛm |
|
| At | |
| Dijestiv Sistɛm | |
| Ɔda tin dɛn we de apin |
Di tin we impɔtant pas ɔl na dat, di at we de mek di at big ɛn di at we nɔ de bit ɔltɛm we dis sik kin kam wit kin mek pɔsin in layf de pan denja. So, yu fɔ rili tek tɛm wit dɛn sik ya.
Aw dis sik kin kam? Udat dɛn de pan denja?
As di nem sho, dis na sik we pɔsin kin gɛt frɔm in mama ɛn papa . If yu gɛt dis sik, na bikɔs yu gɛt di jin we nɔ fayn frɔm yu mama ɔ papa (ɔ ɔl tu).
Dɛn kin tek dis as sik we nɔ kin bɔku na di wɔl. Bɔt na sɔm kɔntri dɛn, fɔ ɛgzampul, Pɔtyugal, Jepan, ɛn Brazil, pipul dɛn kin si dis sik. Pan ɔl we nɔto bɔku patikyula data de bɔt dis na Sri Lanka, dɛn biliv se bɔku pipul dɛn kin de we dɛn nɔ no di sik bikɔs di sik dɛn we dɛn kin gɛt kin fiba ɔda sik dɛn.
Di sayn dɛm kin sho pan ɛni ej, bɔrku tɛm na bitwin 30 ɛn 70. I kin afɛkt man ɛn uman ikwal.
Aw di dɔktɔ kin no bɔt dis sik?
Fɔ no dis sik kin tranga smɔl bikɔs i gɛt bɔku sayn dɛm.
Fɔ aks bɔt famili istri ɛn di sayn dɛm
Fɔs, di dɔktɔ go aks yu ɛn yu famili bɔt yu wɛlbɔdi istri.
- Ɛnibɔdi na yu famili gɛt at sik ɔ at tik?
- Yu kin fil se yu an ɛn fut dɛn de swɛ ɔ yu de bɔn?
- Yu gɛt bɛlɛ we nɔ fayn, yu gɛt dayarɛa, ɔ yu gɛt kɔnstipɛshɔn?
- Yu kin fil diziz we yu tinap?
- Yu gɛt prɔblɛm wit yu yay?
Speshal tɛst dɛn
Dipen pan di sayn dɛm we yu gɛt, yu dɔktɔ kin tɛl yu fɔ du sɔm ɔda tɛst dɛm.
- Blɔd ɛn urine tɛst: Dɛn tin ya kin ɛp fɔ chɛk fɔ si if di prɔtin nɔ de na di bɔdi we nɔ fayn.
- Tissue Biopsy: Dis na di men we fɔ kɔnfɔm di sik. Bɔku tɛm, dɛn kin pul smɔl tisu frɔm di fat pad we de ɔnda di skin na yu bɛlɛ ɔnda anestezi ɛn sɛn am na lɛbɔtri. yu kin yus am fכ si εksakכt if di amyloid protin we wi bin tכk bכt de dכn.
- Jεnεtik Tεst: wans bayopsi kכnfכm se amyloid de, dεn de du DNA tεst fכ no if na hATTR we dεn gεt hεridita כ כda kayn amyloidosis. Dis na impɔtant tin fɔ plan tritmɛnt.
- Ɔda tɛst dɛn: Dɛn kin du ECG ɛn Echo tɛst fɔ chɛk aw di at de wok, ɛn stɔdi bɔt aw di nerv dɛn de kɔndɔkt fɔ chɛk aw di nerv dɛn de wok bak.
Bikɔs dis na sik we nɔ kin apin so ɔltɛm, nɔto ɔl dɔktɔ dɛn kin gɛt bɔku ɛkspiriɛns wit am. So, i rili impɔtant fɔ aks ɔda spɛshal pɔsin fɔ gɛt sɛkɔn opinion afta dɛn dɔn kɔnfyus di sik.
Wetin na de tritmɛnt fɔ dis sik?
Di tritmɛnt fɔ hATTR dipen pan yu simptom dɛm ɛn di stej fɔ di sik. Tu men gol dɛn de fɔ tritmɛnt. Wan pan dɛn na fɔ kɔntrol di sayn dɛn we pɔsin kin gɛt. di כda wan na fכ kכntrכl di prodakshכn fכ di abnכmal TTR protin, we na di כndalayn kכz fכ di sik.
1. Tritmɛnt fɔ di sayn dɛm
- If wata gɛda na di bɔdi bikɔs ɔf at ɔ kidni prɔblɛm, dɛn kin yuz diuretik fɔ pul da ɛkstra wata de.
- Mεdisin dεm de bak fכ di dijestiv sistεm prכblεm dεm lεk dayariya εn bεlε pen.
- Speshal mɛrɛsin dɛn de bak fɔ kɔntrol di pen na di nerv.
2. Tritmɛnt dɛn we dɛn aim fɔ di kɔz fɔ di sik
Dis na de men tritmɛnt wae de mek de sik nɔr de wɔs.
| Di we aw dɛn kin trit am | Tɔk bɔt |
|---|---|
| Drɔg dɛn we de mek Jin Saylɛns | |
| Drug dɛn lɛk Inotersen, Patisiran, Vutrisiran | dis dכg dεm de wok bay we dεn de tεl di jin we de prodyuz di TTR protin na di liva fכ "tכn כf." dis de ridyus di prodakshכn fכ di abnכmal protin. Dɛn kin gi dɛn as injɛkshɔn. |
| Protein Stabilizers (Drɔg dɛn we de mek di bɔdi stebul) . | |
| Drug dɛn lɛk Tafamidis, Diflunisal | dis dכg dεm de wok bay we dεn de atak di TTR protin we dεn de prodyuz εn mek i nכ kכlכp tכgeda kכrekt wan. Dɛn kin tek dɛn tin ya as pils. |
| Liva Transplant we dɛn kin yuz | |
| Ɔpreshɔn | Bikɔs di prɔtin we nɔ fayn de kɔmɔt na di liva, wan tritmɛnt na fɔ chenj di liva wit nyu wan. Bɔt dis na ɔpreshɔn we rili big ɛn we gɛt prɔblɛm. Dɛn kin rɛkɔmɛnd am fɔ yɔŋ pipul dɛm wae gɛt di fɔs stej fɔ di sik. |
Yu dɔktɔ go disayd us tritmɛnt go fayn fɔ yu. Tɔk wit am opin wan bɔt ɔl dɛn tin ya we yu go ebul fɔ du.
Di mɛdikal tim we de ɛp yu
Bikɔs dis sik kin afɛkt bɔku ɔgan dɛn na di bɔdi, yu go nid fɔ gɛt sɔpɔt frɔm wan tim we gɛt difrɛn spɛshal wok dɛn.
- Nyurolɔjis: Fɔ prɔblɛm dɛn we gɛt fɔ du wit di nerv.
- Di dɔktɔ we de mɛn di at: Fɔ wach ɛn trit aw di at de wok.
- Nefrɔlɔjis: If di kidni dɛn afɛkt.
- Gastroenterologist: Fɔ prɔblɛm dɛn we gɛt fɔ du wit bɛlɛ.
- Ɔftalmɔlɔjis: Fɔ prɔblɛm dɛn we gɛt fɔ du wit yay.
- Jɛnɛtik Kɔnsul: Fɔ gi ɔndastandin bɔt di sik ɛn di impak we i gɛt pan ɛriti.
- Fyzikal Tɛrapist: Fɔ ɛp wit prɔblɛm dɛn we de mek pɔsin nɔ ebul fɔ waka ɛn fɔ mek di bɔdi strɔng.
Mɛsej we dɛn kin kɛr go na os
- hATTR Amyloidosis na wan sik we nɔ kin apin so ɔltɛm, we pɔsin kin gɛt frɔm in mama ɛn papa.
- If yu gɛt tin dɛn lɛk fɔ mek yu an ɛn fut dɛn nɔ de fil fayn, yu bɛlɛ de pwɛl ɔltɛm, yu at gɛt sayn dɛn we yu nɔ ebul fɔ ɛksplen, ɛn if pɔsin na yu famili dɔn gɛt dɛn kayn sik ya, nɔ tek am natin.
- If yu no di sik kwik kwik wan ɛn trit am, dat kin ɛp fɔ mek i nɔ wɔs.
- Bikɔs dis na kɔmpleks sik, i rili impɔtant fɔ go to difrɛn spɛshal pipul dɛn fɔ ɛp yu.
- If yu ɔ pɔsin we yu sabi gɛt dɛn sik ya, go to dɔktɔ we sabi du di wok wantɛm wantɛm . Nɔ fred fɔ tɔk bɔt am.
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