Yu kin wɔri bad bad wan we yu kam fɔ no se yu gɛt wan sik we nɔ kin apin so ɔltɛm we dɛn kɔl hATTR amyloidosis. Fɔ tru, na sik we nɔ kin apin so ɔltɛm. Na 50,000 pipul dɛn nɔmɔ ɔlsay na di wɔl gɛt dis sik. Na nɔmal tin fɔ mek yu fred ɛn kɔnfyus we yu yɛri bɔt am. Fɔ tɔk am simpul wan, dis sik kin kam bikɔs wan jin we dɛn kɔl TTR insay wi bɔdi chenj. dis kin mek wan abnכ mal kayn protin we dεn kכl amylכyd de put insay כgan dεm lεk wi at, kidni, nεv sεstem, εn gεstrointestinal sistεm. Dɔn dɛn ɔgan dɛn de nɔ kin ebul fɔ wok fayn. We yu go to dɔktɔ fɔ di fɔs tɛm, i go aks yu bɔku kwɛstyɔn dɛn. I rili impɔtant fɔ mek wi rɛdi bifo tɛm. Dɔn yu ɛn di dɔktɔ kin pik di bɛst tritmɛnt fɔ yu.
Aw yu kin pripia bifo yu go to dɔktɔ?
I fayn fɔ pe atɛnshɔn to dɛn pɔynt ya bifo yu go to dɔktɔ.
No yu famili mɛdikal istri kɔrɛkt wan
hATTR amyloidosis na wan sik we de mek pɔsin gɛt jɛnɛtiks. fכ mεdikal, na ``autosomal dominant`` kכndishכn. Dis min se if wan pan yu mama ɛn papa gɛt di jin muteshɔn we de mek dis sik, yu gɛt 50% chans fɔ gɛt am. If dɛn dɔn no se wan pan yu mama ɛn papa, yu brɔda ɛn sista, ɔ yu pikin gɛt dis sik, i rili impɔtant fɔ mek yu du tɛst fɔ yu jɛnɛtiks, ilɛksɛf yu nɔ gɛt ɛni sayn.
Mɛmba se, jɔs bikɔs pɔrsin na yu famili gɛt dis sik nɔr min se yu go gɛt am 100%. Bɔt fɔ no if yu gɛt di jin kin ɛp yu fɔ gɛt tritmɛnt .
Tek ɔl di tɛst ripɔt dɛn we yu dɔn du.
If yu bin dɔn du ɛni jenɛtik tɛst fɔ luk fɔ di TTR jin muteshon, tɛl yu dɔktɔ bɔt am. Dɔn bak, if yu tɛst rizɔlt sho se yu gɛt di jin, yu dɔktɔ go tɛl yu fɔ du sɔm ɔda tɛst dɛn. Dis na bikɔs hATTR sik kin afɛkt ɔda ɔgan dɛm bak, lɛk di at, di liva, ɛn di kidni dɛm. If yu jɔs dɔn du at tɛst (echocardiogram) ɔ blɔd tɛst, mek shɔ se yu kam wit ɔl dɛn ripɔt dɛn de.
Bring wan list fɔ di mɛrɛsin dɛn we yu de tek.
Yu dɔktɔ go want fɔ no bɔt ɔl di mɛrɛsin dɛn we yu de tek. Dis nɔto jɔs di wan dɛn we yu dɔktɔ tɛl yu fɔ du, bɔt ɛni ɔda tin we yu kin tek fɔ mek yu nɔ fil pen, vaytamɛn, ɛn sɔpɔtmɛnt dɛn we yu kin tek.
Kwɛstyɔn dɛn we di dɔktɔ kin aks yu
If yu rɛdi fɔ ansa yu kwɛstyɔn dɛn, dat go ɛp yu dɔktɔ fɔ disayd di bɛst tritmɛnt fɔ yu. I go gi yu tɛm bak fɔ aks ɛni kwɛstyɔn we yu gɛt.
Na smɔl tin ya bɔt wetin di dɔktɔ go aks yu.
| Di say we dɛn kin aks kwɛstyɔn | Wetin dɛn kin aks yu ɛn wetin yu fɔ no bɔt |
|---|---|
| Famili histri bɔt sik | "Eni oda pesin fo yu famili get hATTR?" dɛn kin aks. Sɔntɛm sɔmbɔdi na yu famili dɔn gɛt at sik, prɔgrɛsiv nyuropathy , carpal tunnel syndrome , ɔ intestinal prɔblɛm. Maybe dem bin geht hATTR en no bin sabi am. So sheb dis infɔmeshɔn wit dɛn. |
| Jɛnɛtik ɛn diagnostik tɛst dɛn | "Yu dɔn gɛt jenɛtik tɛst?" dɛn kin aks. hATTR kin at fɔ no bikɔs i kin afɛkt bɔku ɔgan dɛn. Yu dɔktɔ kin tɛl yu fɔ du dɛn tɛst ya: bayɔpsi (tek wan pat pan di tisu fɔ tɛst), blɔd tɛst, ɛkokadiogram ɔ kadyak MRI fɔ chɛk yu at, ɛn tɛst fɔ kɔndɔkt di nerv fɔ chɛk aw di nerv dɛn de wok. |
| Di sayn dɛm we gɛt fɔ du wit di at | "Yu gɛt sɔm sayn dɛm lɛk we yu at de bit, yu nɔ de blo fayn, yu nɔ kin ebul fɔ du ɛksɛsayz, ɔ yu leg kin swel?" hATTR kin mek dεn protin dεm ya bכku na di at, we kin mek yu at atak, at sik, כ di at mכsul tik (hypertrophic cardiomyopathy) . If yu gɛt dɛn sik ya, dɛn go sɛn yu to dɔktɔ we de mɛn yu at wantɛm wantɛm. |
| Prɔblɛm dɛn we pɔsin kin gɛt we i de si | "Yu get eni chenj fo yu vision, laik flota?" bכt 20% pan di TTR jin mכtεshכn dεm de afekt di yay dεm. Ɛni chenj we de na di we aw pɔsin de si, na dɔktɔ we de mɛn di yay fɔ chɛk am . |
| Prɔblɛm dɛn we pɔsin kin gɛt we i de waka ɛn in nerv | "Yu de get trobul fo waka?" Wan pan di fɔs ɛn kɔmɔn sayn dɛm fɔ hATTR sik na fɔ pwɛl di nerv dɛm na yu an ɛn yu leg (peripheral neuropathy) . Dis kin mek yu gɛt sɔm sayn dɛm lɛk pen, swɛt, ɛn tingling. If dɛn tin ya de afɛkt yu layf, yu go nid fɔ tink bɔt tin dɛn lɛk ɔkupeshɔnal tritmɛnt . |
| Ɔtonomik nervɔs sistɛm prɔblɛm dɛn | "Yu de swet pasmak, yu kin chenj chenj bitwin dayarɛa ɛn kɔnstipɛshɔn, ɔ yu nɔ kin ebul fɔ kɔntrol yu urine?" Dis na prɔblɛm wit di ɔtonomik nɛvɔ sistɛm, we de kɔntrol tin dɛn lɛk wi at rit, blɔd prɛshɔn, ɛn dijeshɔn we wi nɔ ebul fɔ kɔntrol. Fɔ gɛt dɛn kayn sik ya kin bi sayn fɔ sho se yu hATTR kɔndishɔn de wɔs. |
Di dɔktɔ kin tɔk bak bɔt aw fɔ trit am.
Afta yu dɔn kɔnfirm yu sik, di dɔktɔ go tɔk to yu bɔt aw fɔ trit yu.
Yu dɔn tek yu mɛrɛsin ɔlrɛdi?
Bɔku mɛrɛsin dɛn de we dɛn dɔn gri fɔ naw fɔ kɔntrol hATTR ɛn slo fɔ mek i go bifo. Ɛgzampul dɛn na ` Ɛplontersen (Wainua)`, `inotersen (Tegsedi)`, `patisiran (Onpattro)`, `vutrisiran (Amvuttra)`, `tafamidis (Vyndamax)`, ɛn `tafamidis mɛglumin (Vyndaqel)`. I impɔtant fɔ tɛl yu dɔktɔ if yu dɔn yuz ɛni wan pan dɛn mɛrɛsin ya bifo, if dɛn ɛp yu, ɔ if dɛn kɔz ɛni sayd ɛfɛkt.
Wetin yu tink bɔt liva transplant?
Fɔ bɔku bɔku ia, di bɛst tritmɛnt fɔ hATTR na fɔ transplant liva. Bɔt i kin kam wit ay risk fɔ gɛt prɔblɛm dɛn, mɔ di at prɔblɛm dɛn. Nyu risach dɔn sho se sɔm nyu mɛrɛsin dɛn kin wok lɛk fɔ transplant liva. So yu kin tɔk to yu dɔktɔ bɔt di gud ɛn bad tin dɛn we dis ɔpreshɔn ɛn ɔda tritmɛnt dɛn kin gɛt.
Yu go lɛk fɔ tek pat pan wan klinik trial?
Dɔktɔ dɛn kin ɔltɛm luk fɔ bɛtɛ we fɔ kia fɔ di wan dɛn we gɛt hATTR. Wan we fɔ du dis na fɔ du klinik trial. Dɛn dɔn tɛst ɛni mɛrɛsin we dɛn dɔn gri fɔ tide dis we. Dis na fayn chans fɔ gɛt nyu tritmɛnt bifo i kam fɔ di jenɛral pɔblik. Bɔt sɔm prɔblɛm dɛn de we kin mek pɔsin gɛt prɔblɛm. Yu kin aks yu dɔktɔ bɔt dis bak.
Mɛsej we dɛn kin kɛr go na os
- hATTR amyloidosis na wan sik we nɔ kin bɔku, we pɔsin kin gɛt frɔm in mama ɛn papa. Na nɔmal tin fɔ mek yu fil wɔri we yu lan bɔt am.
- We yu go to dɔktɔ, kam wit yu famili mɛdikal istri, tɛst rizɔlt we yu dɔn gɛt, ɛn wan list fɔ di mɛrɛsin dɛn we yu de tek.
- Tɛl yu dɔktɔ bɔt yu sik dɛn (chɛst pen, i nɔ kin izi fɔ blo, yu an ɛn fut dɛn kin swɛla, yu kin chenj na yu yay) we yu nɔ ayd ɛnitin.
- Tɔk opin wan wit yu dɔktɔ bɔt di tritmɛnt opshɔn dɛm (mɛrɛsin, ɔpreshɔn, mɛdikal risach) ɛn aks ɔl di kwɛstyɔn dɛm wae yu gɛt.
- If yu no di sik kɔrɛkt wan ɛn gɛt di rayt tritmɛnt, yu go ebul fɔ liv fayn fayn wan wit dis sik.
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