Sɔntɛnde, yu an ɛn fut dɛn kin swɛ? Yu kin gɛt bɛlɛ pen ɔ yu kin gɛt diziz we yu tinap? Pan ɔl we dɛn tin ya kin tan lɛk nɔmal tin, sɔmtɛm, wetin kin ayd biɛn dis kin bi wan sik we nɔ kin apin so ɔltɛm we bɔku pipul dɛn nɔ ivin yɛri bɔt, ɛn we kin pas fɔ lɔng lɔng tɛm. Tide wi go tɔk bɔt wan pan dɛn kayn sik ya, we na hATTR amyloidosis . Pan ɔl we dis na tɔpik we kɔmpleks smɔl, lɛ wi ɔndastand am simpul wan.
Wetin na hATTR Amyloidosis?
Fɔ tɔk am simpul wan, hATTR (Hereditary Transthyretin Amyloidosis) na wan sik we nɔ kin apin so ɔltɛm we kin pas frɔm wan jɛnɛreshɔn to ɔda jɛnɛreshɔn ɛn i kin wɔs smɔl smɔl as tɛm de go. Di tin we kin mek wi du dis na we wi jin dɛn chenj, we dɛn kɔl muteshon.
Imajin se na jin dɛn de kɔntrol ɔltin na wi bɔdi. Wan jin de we dɛn kɔl TTR na wi liva. we mכtεshכn de insay dis jin, di protin we dεn kכl ‘transthyretin’ we i de mek de tek wan abnכmal, rכng shep bak.
dis protin dεm we nכ shep fayn kin kכlכm tכgeda εn fכm dεposit dεm we dεn kכl ‘ amyloid ’ insay wi bכdi in nεv dεm εn difrεn כgan dεm. Jɔs lɛk aw dɔti ɛn rɔst kin lɔk wata paip, dɛn amilɔyd dɛn ya kin pwɛl dɛn ɔgan dɛn de.
Dis sik kin mek pɔsin gɛt polyneuropathy, we na damej pan di nerve dɛm we de rɔn frɔm di bren to ɔda pat dɛm na di bɔdi. Pan ɔl we dis na siriɔs sik, if dɛn trit am fayn, dɛn kin kɔntrol di sayn dɛm ɛn kɔntinyu fɔ liv.
Wetin na di sayn dɛm fɔ hATTR sik?
Bikɔs hATTR sik kin afɛkt bɔku ɔgan dɛm na di bɔdi, di sayn dɛm kin rili difrɛn. Sɔmtɛm dɛn kayn sik ya kin tan lɛk ɔda sik dɛn we kin kam, so i kin tranga fɔ no di sik.
Si di tebul dɔŋ ya fɔ no wetin na dɛn sayn ya.
| Sistem/ɔgan we dɛn afɛkt | Sɔm sayn dɛn we kin apin |
|---|---|
| Nɛvɔs Sistɛm | Yu nɔ de fil fayn, yu de swɛt, yu de fil pen, ɛn afta dat yu nɔ de fil fayn na yu an ɛn fut. Di sik we dɛn kɔl Carpal Tunnel Syndrome. I nɔ izi fɔ waka. |
| At & Sakyuleshɔn | At nɔ de bit ɔltɛm, at de big, at atak. Lɔw blɔd prɛshɔn ɛn fɔdɔm we yu tinap. |
| Dijestiv Sistɛm | Alternating dayarɛa ɛn kɔnstipɛshɔn fɔ natin. Fɔ fil ful ivin afta yu dɔn it smɔl. We yu de lɔs yu wet. |
| Kidni & Yurinari Sistɛm | I nɔ kin izi fɔ yu fɔ pis. Di kidni nɔ de wok fayn. |
| Yay | Dray yay, inkris ay prɛshɔn (glaukoma), blurred vishɔn. |
Mɛmba se bɔku pan dɛn sik ya kin mek pɔsin in layf de pan denja, mɔ we i kin gɛt prɔblɛm wit in at. So if yu gɛt ɛni wan pan dɛn sayn ya, mɔ if pɔsin na yu famili dɔn gɛt dis sik, go to dɔktɔ wantɛm wantɛm.
Aw dɛn kin no bɔt hATTR sik?
Bikɔs dis sik nɔ kin bɔku ɛn di sayn dɛm kin tan lɛk ɔda sik dɛm, i kin tranga smɔl fɔ no. Bɔt di dɔktɔ de pe atɛnshɔn pan sɔm tin dɛn.
- Famili mɛdikal histri : Aks if ɛnibɔdi na yu famili dɔn gɛt at atak, at mɔsul dɛn tik, ɔ ɔda nyurolɔjik prɔblɛm.
- Kwɛshɔn bɔt di sayn dɛm: Aks if yu gɛt di sayn dɛm wae wi bin dɔn tɔk bɔt.
- Jεnεtik Tεst: dεn de tεst blכd sεmpl כ skin sεl sεmpl fכ si if mכtεshכn de na di TTR jin. Dis na di mכst definitiv we fכ kכnfכm di sik.
- Tissue Biopsy : Dɛn kin tek smɔl fat we de ɔnda di skin na di bɛlɛ wit smɔl nidul ɛn chɛk am ɔnda maykroskɔp fɔ si if ɛni amyloid deposit. Nɔ wɔri, dis nɔto big ɔpreshɔn ɛn dɛn kin du am kwik kwik wan.
- Ɔda tɛst dɛn:Dɛn kin du blɔd ɛn urine tɛst, nerve function test, ɛn test lɛk ECG ɛn Echo fɔ chɛk aw at de wok bak.
Wetin na di tritmɛnt dɛm fɔ hATTR?
Tu men gol de fɔ trit hATTR sik. Wan na fɔ kɔntrol di sayn dɛm, ɛn di ɔda wan na fɔ ridyus ɔ stɔp di prodakshɔn ɛn dipɔzishɔn fɔ di fɔlt protin na di bɔdi.
Tritmɛnt fɔ di sayn dɛm
- Dɛn kin gi mɛrɛsin fɔ at prɔblɛm ɛn fɔ mek wata gɛda na di bɔdi .
- Dɛn kin gi mɛrɛsin fɔ prɔblɛm dɛn we gɛt fɔ du wit di dijestiv sistɛm lɛk dayarɛa ɛn kɔnstipɛshɔn.
- Dɛn kin yuz mɛrɛsin fɔ kɔntrol di pen na di nerve.
Tritmɛnt we dɛn aim fɔ di kɔz fɔ di sik
Dis na de men tritmɛnt wae kin chenj aw de sik de go.
- Gene Silencer Drugs: Dɛn drɔgs ya de wok bay we dɛn de stɔp di TTR jin na di liva fɔ mek di rɔng protin. `Inotersen`, `Patisiran`, `Vutrisiran` na sɔm pan dɛn drɔgs ya. Sɔm pan dɛn kin de as injɛkshɔn ɛvri wik, we dɛn kin gi ɔda wan dɛn insay di bɛlɛ ɛvri 3 wik.
- Jin Stabiliza Drug dεm: dεn dכg ya de wok bay we dεn de mek di TTR protin we dεn fold fayn fכ kכlכp tכgeda εn fכm amyloid dεposit dεm. `Tafamidis` ɛn `Diflunisal` na drɔgs na dis klas.
- Liva Transplant: Bikɔs di prɔtin we nɔ fayn de kɔmɔt na di liva, we pɔsin transplant liva kin kɔntrol di sik we de prɛd bɔku pan am. Bɔt dis na big ɔpreshɔn. Ɛn i kin jɔs kɔmɔt fayn na di fɔs tɛm we di sik de.
Di mɛdikal tim we de ɛp yu
Bikɔs dis sik kin afɛkt bɔku pat dɛn na yu bɔdi, yu go nid bɔku spɛshal pipul dɛn fɔ ɛp yu.
| Spɛshal dɔktɔ | Di ɛp we dɛn kin gɛt |
|---|---|
| Nyurolɔjis | Fɔ manej di nerve damej ɛn pen. |
| Wan dɔktɔ we de mɛn di at | Fɔ wach di ifɛkt dɛm pan di at ɛn gi tritmɛnt we nid. |
| Nefrɔlɔjis we de mɛn pipul dɛn | Fɔ chɛk aw di kidni de wok ɛn ɛp fɔ protɛkt am. |
| Jɛnɛtik Kɔnsɔla | Ɛksplen aw dis sik kin afɛkt yu ɛn yu famili. |
| Fizik Tɛrapist | Fɔ gi ɛksesaiz fɔ mek i izi fɔ waka ɛn fɔ mek yu bɔdi muv. |
Mɛsej we dɛn kin kɛr go na os
- hATTR na siriɔs jɛnɛtik sik we kin wɔs as tɛm de go.
- If yu gɛt sɔm sayn dɛm lɛk wae yu an ɛn fut nɔr de fil fayn, at sik, ɔr yu bɛlɛ at, mɔr lɛk if pɔrsin na yu famili dɔn gɛt dis sik, nɔr tek am natin.
- Di kwik we dɛn no dis sik, na di mɔ di tritmɛnt go bɛtɛ.
- Naw, mɛrɛsin ɛn tritmɛnt dɛn de we rili fayn fɔ kɔntrol dis sik. So nid nɔ de fɔ fred.
- If yu gɛt ɛni kwɛstyɔn bɔt dis sik, nɔr frayd fɔ tɔk to yu dɔktɔ.
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