Yu ɔ pɔsin we de nia yu gɛt wan sik we nɔ kin apin so ɔltɛm we dɛn kɔl hATTR amyloidosis ? Dɔn, sɔntɛm fɔ go to dɔktɔ na nɔmal tin na yu layf. Bɔt ɛnitɛm we wi go to dɔktɔ, i rili impɔtant fɔ mek wi yuz da visit de fayn fayn wan. Di bɛst we fɔ du dat na fɔ pripia smɔl bifo yu go to dɔktɔ. We yu go to dɔktɔ dis we, yu go fil fri ɛn i go ɛp di dɔktɔ bak fɔ disayd di tritmɛnt we go fayn fɔ yu. Lɛ wi si aw wi go rɛdi fɔ dis ɛksaktɔli?
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Fɔs, lɛ wi ɔndastand, wetin na hATTR Amyloidosis?
Fɔ tɔk am simpul wan, hATTR na sik we nɔ kin bɔku we pɔsin kin gɛt frɔm dɛn mama ɛn papa, we min se i kin pas tru di jin dɛn na famili. Fɔ tɔk tru, na wan pan di kayn sik dɛn we dɛn kɔl Transthyretin Amyloidosis (ATTR). Dis sik kin wɔs smɔl smɔl as tɛm de go, so i rili impɔtant fɔ no di sik ɛn bigin fɔ trit am kwik kwik wan .
Dis sik kin afɛkt bɔku ɔgan dɛn na wi bɔdi, so yu kin nid fɔ go to sɔm difrɛn spɛshal pipul dɛn instead fɔ go to wan. Fɔ ɛgzampul:
- Wan dɔktɔ we de mɛn di at
- Wan dɔktɔ we de mɛn blɔd
- Nyurolɔjis
Nɔto ɔl dɛn dɔktɔ ya de wok na di sem ɔspitul sistɛm. So nɔ tink se yu infɔmeshɔn we yu gi wan dɔktɔ de fɔ ɔda dɔktɔ. Sɔntɛnde, bikɔs ɔspitul dɛn kɔmpyuta sistem nɔ kɔnɛkt, dɛn nɔ kin sheb yu mɛdikal rɛkɔd . Na dat mek i impɔtant fɔ kam wit yu infɔmeshɔn to ɛvri apɔntinmɛnt.
Tin dɛn we yu fɔ rili briŋ we yu go to dɔktɔ
Ivin if yu dɔktɔ gɛt yu ol mɛdikal rɛkɔd, i go fayn fɔ mek yu kam wit di layt infɔmeshɔn we yu go gɛt fɔ ɛvri apɔntinmɛnt. I go rili izi fɔ yu fɔ mek dɛn ɔganayz dɛn tin ya ɛn rɛdi na wan fayl.
| Wetin fɔ pripia | Ditiɛl dɛn fɔ put insay |
|---|---|
| Wan list fɔ di sayn dɛn we pɔsin kin gɛt | Rayt ɔl di sayn dɛm fɔ hATTR wae yu de gɛt. Fɔ ɛgzampul, fɔ vɔmit, yu yay dray, blak spat we de flɔt bifo yu yay, we yu de lɔs yu wet, fil ful ivin afta yu it smɔl it, yu leg dɛn de swel, carpal tunnel syndrome. Dɔn bak, tɛl yu dɔktɔ bɔt ɛni sayn we nɔ kin apin so ɔltɛm lɛk ed we de at, strok, we yu nɔ de mɛmba fayn, ɔ we yu de sik. Di sayn dɛm kin chenj as tɛm de go, so tɛl yu dɔktɔ bɔt ɛni chenj. I impɔtant fɔ tɛl yu dɔktɔ if yu gɛt ɛni ɔda sayn we yu tink se nɔ gɛt natin fɔ du wit hATTR. |
| Mɛrɛsin, vaytamɛn ɛn sɔpɔtmɛnt dɛn | Rayt ɔl di mɛrɛsin, vaytamɛn, ɛn sɔpɔtmɛnt we yu de tek. Put di doz, di tɛm dɛn we yu de tek am, ɛn di famasi we de gi am. If ɛni mɛrɛsin de we spɛshal fɔ hATTR (e.g., eplontersen (Wainua) , inotersen (Tegsedi) , patisiran (Onpattro) , tafamidis (Vyndamax) ), mek shɔ se yu rayt dɛn bak. Ivin mɛrɛsin dɛn we dɛn kin bay na kɔt lɛk Panadol ɛn Vitamin C kin de na dis list. |
| Yu ɛn yu famili in mɛdikal istri | Tɛl yu dɔktɔ bɔt ɛni ɔda mɛrɛsin we yu gɛt (e.g., dayabitis, ay blɔd prɛshɔn), ɛn ɛni ɔpreshɔn we yu dɔn du. Di tin wae impɔtant pas ɔl na fɔ tɛl yu tayt fambul dɛm (mama ɛn papa, brɔda ɛn sista dɛm) bɔt ɛni mɛrɛsin wae yu gɛt. If ɛnibɔdi na yu famili gɛt hATTR, tɛl dɛn wetin na bin di men sayn dɛm. |
| Di Rizult fɔ Tɛst | Bring ɔl di tɛst rizɔlt dɛn we gɛt fɔ du wit hATTR. Dɛn tin ya na blɔd tɛst, nyurolɔjik tɛst, at tɛst (ECG, Echo), MRI skan ripɔt, ɛn bayɔpsi ripɔt. Ɛspɛshali, if yu gɛt ɛni tisu sɛmpul we dɛn tek frɔm yu bɛlɛ fat pad bayɔpsi ɔ ɔda ɔgan dɛn, mek shɔ se yu kam wit dɛn. |
| Jɛnɛtik Tɛst Rizɔlt | Dis na di ripɔt we impɔtant pas ɔl. mek shɔ se yu kam wit di ɔrijinal jenɛtik tɛst ripɔt we kɔnfyus se yu gɛt muteshon na di Transthyretin (TTR) jin. If ɛnibɔdi na yu famili (mama ɛn papa, brɔda ɛn sista, pikin) dɔn gɛt jenɛtik tɛst fɔ hATTR, i fayn fɔ kam wit dɛn ripɔt dɛn de bak. |
| Wan list we gɛt kwɛstyɔn dɛn we yu fɔ aks | Yu kin fɔgɛt wetin yu want fɔ aks di dɔktɔ. So, bifo yu go, rayt ɛni kwɛstyɔn we yu gɛt pan pepa. Dɔn bak, kam wit wan notbuk ɛn pen fɔ rayt wetin di dɔktɔ se. If yu si am se i nɔ izi fɔ du dɛn tin ya yu wan, nɔ ɛva fred fɔ kam wit yu fambul ɔ padi we yu kin abop pan fɔ ɛp yu. |
Wetin mek i rili impɔtant fɔ rɛdi dis kayn we?
Imajin, ɔl dɛn ditayli ditil ya we yu gi tan lɛk pikchɔ to di dɔktɔ. I de ɛp am fɔ ɔndastand yu wɛlbɔdi prɔblɛm gud gud wan. Na da tɛm de nɔmɔ i go tɛl yu bɔt di tritmɛnt we fit yu ɛn we kɔrɛkt pas ɔl.
As wi bin dɔn tɔk, nɔto ɔltɛm dɛn kin sheb infɔmeshɔn bitwin ɔspitul dɛn. So nɔ tink se yu dɔktɔ no yu mɛdikal istri. I bɛtɛ ɛn i sef fɔ kam wit yu yon infɔmeshɔn.
If yu tray smɔl ɛn rɛdi bifo yu go to dɔktɔ, yu go ebul fɔ gɛt di bɛst bɛnifit frɔm da apɔntinmɛnt de. I nɔ go jɔs ɛp yu, bɔt i go ɛp di dɔktɔ we de trit yu bak.
Mɛsej we dɛn kin kɛr go na os
- Ɛvri tɛm we yu go si dɔktɔ fɔ hATTR, rɛdi fɔ am bifo tɛm.
- Kip yu sayn dɛm, ɔl di mɛrɛsin dɛm wae yu de yuz, tɛst ripɔt (especially genetic test report), ɛn famili mɛdikal histri na wan fayl.
- Rayt yu kwɛstyɔn dɛn pan pepa bifo tɛm, bikɔs yu go fɔgɛt dɛn. Nɔ fred fɔ kam wit pɔsin fɔ ɛp yu.
- Di infɔmeshɔn we yu go gi go rili ɛp di dɔktɔ fɔ ɔndastand yu sik ɛn gi yu di bɛst tritmɛnt.
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