Fɔ fɛn dɔktɔ we rayt fɔ yu ɛn we ɔndastand yu kin at smɔl sɔntɛnde. Wi ɔl difrɛn, wi gɛt difrɛn tin dɛn we wi nid ɛn we wi lɛk. So if yu gɛt wan sik wae nɔr kin bɔrku lɛk hATTR Amyloidosis , yu kin si se i kin kɔmplikt pasmak. We yu de trit wan sik lɛk dis, i impɔtant fɔ fɛn dɔktɔ we ɔndastand di sik gud gud wan ɛn we go gi yu di lɛvul fɔ kia we yu nid. Infakt, fɔ mek yu gɛt di bɛst tritmɛnt, yu nid fɔ fɛn sɔm spɛshal pipul dɛn we sabi du difrɛn tin dɛn.
Us kayn dɔktɔ dɛn de trit hATTR?
Fɔ tɔk am simpul wan, hATTR amyloidosis na wan sik we nɔ kin apin so ɔltɛm we kin afɛkt bɔku ɔgan dɛn na yu bɔdi di sem tɛm. Dis min se yu nɔ go ebul fɔ gɛt tritmɛnt frɔm jɔs wan spɛshal pɔsin. Yu go nid di sɔpɔt fɔ wan tim we gɛt bɔku difrɛn wok dɛn.
Fɔ ɛgzampul, if dis sik dɔn afɛkt yu at, yu go nid fɔ go to dɔktɔ we de mɛn yu at. Bɔt if yu gɛt prɔblɛm wit yu nyurolɔjik, lɛk we yu leg dɛn de swɛla ɔ yu wik, yu go nid fɔ go to dɔktɔ we de mɛn yu nyurolɔjis. So, di sayn dɛm wae yu de gɛt, di ɔgan dɛm wae de afɛkt, ɛn aw di sik dɔn pwɛl, na in go sho us spɛshal pipul dɛm yu fɔ si.
Insay di tebul we de dɔŋ ya, wi go si us spɛshal pipul dɛn we dɛn nid mɔ pan hATTR sik ɛn us kayn sik dɛn kin trit.
| Speshal mɛdikal fild | Kɔmɔn simptom/kɔndishɔn dɛm wae dɛn kin trit |
|---|---|
| Wan dɔktɔ we de mɛn di at | di at fכnshכn wik (Cardiomyopathy), di at ritm we nכ de rεgulεr, difεlεns fכ brith. |
| Nyurolɔjis | di limb dεm we de sכmtεm sכmtεm, tingling, pen, εn lכs sεns na di limb dεm (Peripheral Neuropathy). |
| Gastroenterɔlɔjis we de mɛn di bɔdi | Bɛlɛ pen, dayarɛa, kɔnstipɛshɔn, we yu de lɔs, yu nɔs. |
| Nefrɔlɔjis we de mɛn pipul dɛn | we di kidni dεm afekt (e.g. protin na di urine). |
| Wan dɔktɔ we de mɛn pipul dɛn we gɛt yay | we di yay dεm afekt (e.g. di ay prεshכn we de inkrεs, blכr vishכn). |
| Jɛnɛtik Kɔnsɔla | Bikɔs dis na sik we pɔsin kin gɛt frɔm in mama ɛn papa, dɛn fɔ advays famili dɛn bɔt di prɔblɛm ɛn fɔ tɛst dɛn jɛnɛtiks. |
Yu simptom kin dipen pan di spεsifi k mכtεshכn na di Transthyretin (TTR) jin we de mek di sik. Dis go sho us kayn dɔktɔ yu nid. Yu kin nid fɔ go to ɔda spɛshal pipul dɛn bak if nyu sayn dɛn de kam as tɛm de go as di sik de go bifo.
Aw fɔ fɛn hATTR spɛshal pɔsin na Sri Lanka?
We yu de trit wan sik we nɔ kin bɔku lɛk dis, i rili impɔtant fɔ gɛt spɛshal kia. Insay Sri Lanka, di bɛst we fɔ du dis na fɔ go na wan big ɔspitul usay bɔku spɛshal pipul dɛn de wok na wan ples.
Bɔku tɛm, na big gɔvmɛnt ɔspitul dɛn lɛk Tichin Ospital ɛn Nashɔnal Ospital na Sri Lanka, spɛshal pipul dɛn we sabi du difrɛn tin dɛn kin kam togɛda fɔ trit di wan dɛn we sik. Sɔm big prayvet ɔspitul dɛn kin gɛt dis ples bak.
Yu fɔs step fɔ dis joyn fɔ bi fɔ go to yu famili dɔktɔ (GP). I kin rifer yu to di spɛshal dɔktɔ we fit yu pas ɔl ɔ ɔspitul wit wan tim fɔ spɛshal pipul dɛn, i go dipen pan di sayn dɛn we yu gɛt.
Di bɛnifit fɔ gɛt tritmɛnt na sɛnta lɛk dis na dat ɔl yuFɔ gɛt mɛdikal rɛkɔd na wan ples min se dɔktɔ dɛn kin ebul fɔ tɔk to dɛnsɛf bɔt yu sik izi wan ɛn mek di bɛst tritmɛnt plan. Yu kin lan bak bɔt nyu tritmɛnt ɔr klinik trial dɛm.
A go stil nid mi famili dɔktɔ?
Yɛs, na fɔ tru. Ivin if yu gɛt hATTR, yu praymari kia dɔktɔ rili impɔtant. Na in na di sɛnt fɔ yu wɛlbɔdi. I rili impɔtant fɔ mek yu gɛt gud kɔmyunikeshɔn bitwin yu tim fɔ spɛshal pipul dɛn ɛn yu famili dɔktɔ . Nɔ fɔgɛt fɔ tɛl yu famili dɔktɔ bɔt ɔltin we yu dɔn si, trit, tɛst, ɛn ɔda tin dɛn Dɔn bak, gi kɔpi fɔ yu spɛshal ripɔt to yu famili dɔktɔ.
Aw a go kɔdinɛt mi tritmɛnt wit bɔku dɔktɔ dɛn?
Pan ɔl we dis kin tan lɛk se i nɔ izi fɔ yu, i kin rili izi if yu plan bifo tɛm.
- Kip yu yon fayl: Kip ɔl yu tɛst ripɔt, prɛskrishɔn, ɛn instrɔkshɔn dɛn na wan fayl. Mentɛn wan klinik buk.
- Kip ɔltin no: Tɛl ɔl dɔktɔ wae yu si bɔt ɛni nyu sayn wae yu gɛt, ɔr if wan ol sayn de wɔs.
- Aks kwɛstyɔn: If sɔntin de we yu nɔ ɔndastand, nɔ fred fɔ aks yu dɔktɔ igen. I rili impɔtant fɔ mek yu ɔndastand yu sik gud gud wan ɛn aw fɔ trit yu.
Aw a go pik di rayt dɔktɔ fɔ mi?
Yu nid fɔ gɛt gud padi biznɛs wit di dɔktɔ we de trit yu, bikɔs dis na lɔng tɛm waka.
Na yu rayt fɔ pik dɔktɔ we go lisin to yu, trit yu wit rɛspɛkt, ɛn ɔndastand wetin yu de tɔk.
Yu kin lɛk dɔktɔ we na yu yon man ɔ uman. Ɔ, yu kin lɛk pɔsin we de ɛksplen tin dɛn di we we yu go ɔndastand. We yu de dil wit wan sik we yu kin gɛt frɔm yu mama ɛn papa lɛk dis, i impɔtant fɔ go to dɔktɔ we go gayd yu fɔ no aw i kin afɛkt ɔda pipul dɛn na yu famili ɛn us tɛst dɛn kin nid.
If yu nɔr fil fayn wit di fɔs dɔktɔ wae yu go si, nɔr wɔri bɔt am. Ɔda gud dɔktɔ dɛn de we go fit yu fayn ɛn ɔndastand wetin yu nid. Du sɔm risach ɛn fɛn di bɛst dɔktɔ fɔ yu.
Mɛsej we dɛn kin kɛr go na os
- hATTR amyloidosis na sik we de afɛkt bɔku ɔgan dɛn na di bɔdi, so yu go nid di sɔpɔt fɔ wan tim we gɛt dɔktɔ dɛn we sabi difrɛn tin dɛn.
- Di fɔs tin we yu fɔ du na yu joyn fɔ go to yu famili dɔktɔ (GP). I go rifer yu to di spɛshal pipul dɛn we fit fɔ yu.
- I impɔtant fɔ mek yu kɔntinyu fɔ tɔk fayn to ɔl di dɔktɔ dɛn we de trit yu. Kip ɔl yu mɛdikal rɛkɔd dɛn ɔdasay.
- Tek tɛm fɛn dɔktɔ we go lisin to yu, rɛspɛkt yu, ɛn ɛksplen tin dɛn to yu simpul wan. Fɔ go to dɔktɔ we yu fil fayn wit ɛn we yu kin trɔst, na impɔtant tin bak fɔ yu maynd wɛlbɔdi.
- Mɛmba se nɔto yu wangren de du dis waka. If di rayt mɛdikal tim de gayd yu, yu kin liv fayn fayn wan wit dis sik.
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