If yu gɛt wan sik we de te, ɔ we nɔ de mɛn lɛk hereditary ATTR amyloidosis, yu nid wan big tim fɔ dɔktɔ ɛn wɛlbɔdi biznɛs pipul dɛn fɔ ɛp yu fɔ manej am. Dis na tru mɔ fɔ pipul dɛn we gɛt hATTR amyloidosis. Dis na wan sik we pɔsin kin gɛt we i kam pan jɛnɛtiks. Wetin kin apin na dat wan abnɔmal prɔtin we dɛn kɔl amyloid kin bil insay impɔtant ɔgan dɛn lɛk yu at, kidni, nervɔs sistɛm, ɛn intestinal. So, bikɔs dis kɔndishɔn de afɛkt bɔku pat dɛn na yu bɔdi, yu hATTR wɛlbɔdi tim go gɛt sɔm spɛshal pipul dɛn.
Udat de pan yu hATTR amyloidosis mɛdikal tim?
Naw, lɛ wi luk di men mɛrɛsin pɔrsin wae go ɛp yu wit yu wɛl bɔdi biznɛs. Tugɛda, dɛn go ɛp yu fɔ kɔntrol yu sik fayn fayn wan.
Nyurolɔjis
insay hATTR, wan kכndyushכn we dεn kכl pεrifεral nyuropati kin rili kכmכn. Fɔ tɔk am simpul wan, dis na damej pan di nɛv dɛn na yu an, yu fut, ɛn yu leg dɛn we de dɔŋ. Yu kin gɛt sɔm kayn sik lɛk dis:
- Pen
- Fɔ mek pɔsin nɔ ebul fɔ du natin
- Swɛl
- Wiknɛs na di an ɛn fut dɛn
- I kin tan lɛk se dɛn de chuk am lɛk stik.
As di sik de go bifo, yu mɔsul dɛn kin stif ɛn wik, ɛn dis kin mek i nɔ izi fɔ waka ɛn du ɛnitin we nid fɔ gɛt fayn fayn motoka dɛn.
Nyurolɔjis go du tɛst dɛn, lɛk tɛst fɔ kɔndɔkt di nerve, fɔ wach aw yu periferik nerve de wok fayn fayn wan. Dis go ɛp fɔ no if yu gɛt nyurolɔjik kɔndishɔn ɛn aw i bad.
Bɔrku pan di tritmɛnt dɛm wae dɛn dɔn gri fɔ hATTR kin ɛp bak fɔ trit yu nyurolɔjik kɔndishɔn. Yu dɔktɔ kin gi yu ɔda mɛrɛsin dɛn bak fɔ ɛp fɔ mek yu gɛt pen na yu nerv.
| Kategori fɔ drɔgs | Ɛgzampul dɛn bɔt drɔgs |
|---|---|
| Di tritmɛnt dɛn we dɛn dɔn gri fɔ fɔ hATTR | Eplontersen (Wainua), Inotersen (Tegsedi), Patisiran (Onpattro), Vutrisiran (Amvuttra) ɛn ɔda pipul dɛn we de na di kɔntri. |
| Mɛrɛsin fɔ mek pɔsin gɛt pen na di nerve | Amitriptilin, Dulɔksɛtin (Simbalta), Gabapɛntin (Nyurɔntin), Prɛgabalin (Lyrica) |
Wan dɔktɔ we de mɛn di at
Dis dɔktɔ de trit sik dɛn na di at ɛn di blɔd vesel dɛn. Pipul wae gɛt hATTR kin gɛt bɔrku risk fɔ gɛt at sik. dis na biכs di amyloid dεposit dεm kin bכku na di at. Dis kin mek yu gɛt dɛn tin ya:
De tin wae impɔtant pas ɔl na fɔ no bɔt dɛn sik ya ɛn go to dɔktɔ kwik kwik wan if nid de.
| Di tin dɛn we kin apin to di at | Simpul ɛksplen |
|---|---|
| Kɔnjɛstiv At Failure | di at kin wik εn wata kin gɛda na di lכng dεm εn כda tisu dεm. |
| Hypertrophic Kadiomayopati we pɔsin kin gɛt | Di at mɔsul we de tik. |
| Koronari At Sik we pɔsin kin gɛt | di blɔd vesel dɛn we de gi di at blɔk. |
| Aritmia we nɔ de wok fayn | Di at we nɔ de bit ɔltɛm. |
| Sinkɔp we dɛn kɔl Syncope | Diziz ɔ fɔdɔm. |
If dɛn no se yu gɛt hATTR, yu dɔktɔ we de mɛn yu at go du sɔm tɛst fɔ si aw yu at de wok fayn. Dɛn tin ya kin bi ɛkokardiogram , MRI skan, 6 minit tɛst fɔ waka, ɛn blɔd tɛst. If yu at wik, dɛn go gi yu mɛrɛsin fɔ kɔntrol di sik, lɛk fɔ mek yu nɔ gɛt sɔl ɛn wata, ɛn sɔntɛm dɛn go gi yu mɛrɛsin fɔ mek yu at pwɛl .
Wan dɔktɔ we de mɛn pipul dɛn we gɛt yay
If yu gɛt hATTR, i impɔtant fɔ go to ay spɛshal pɔsin ɔltɛm. bכt 20% pan di jεnεtik mכtεshכn dεm we de mek hATTR de afekt di yay dεm. Dis kin mek yu gɛt sɔm kayn sik lɛk:
- Dak flota (we yu si blak dɔt dɛn we de flɔt bifo di yay) .
- Dray yay
- Glaukoma ɔ di ay prɛshɔn we de go ɔp
- Vitreous opacity (klawd na di klia jel we de ful di aybol) .
- Ɔda vishɔn dɛn kin chenj
If nid de, yu yay dɔktɔ kin du ɔpreshɔn we dɛn kɔl trabeculectomy fɔ trit glaukoma. I kin du ɔpreshɔn bak we dɛn kɔl vitrectomy fɔ pul di jel na di yay.
Jɛnɛtik Kɔnsɔla
If yu dɔktɔ saspek se yu gɛt hATTR, i go rifer yu to pɔsin we de advays yu bɔt yu jɛnɛtiks . Dɛn kin tɛst fɔ di jin we kin chenj we kin mek pɔsin gɛt di sik. Dɔn bak, if dɛn dɔn no se pɔsin na yu fambul we de nia yu (mama ɔ papa, yu brɔda ɛn sista, ɔ pikin) gɛt hATTR, yu fɔ rili gɛt tɛst. dis na biכs di klos famili mεmba dεm gεt 50% chans fכ gεt dis jin mכtεshכn. Di jenɛtik kɔlnɔ go ɛksplen dɛn tɛst ya to yu ɛn tɔk bɔt dɛn wit yu wans di rizɔlt dɔn kam.
Ɔda impɔtant mɛmba dɛn na yu mɛdikal tim
Apat frɔm di spɛshal pipul dɛn we wi dɔn tɔk bɔt, bɔku ɔda wan dɛn de ple impɔtant pat fɔ mek yu gɛt wɛlbɔdi.
| Sabi gud gud wan | Aw dɛn go ɛp yu? |
|---|---|
| Nefrɔlɔjis we de mɛn pipul dɛn | Na lɛk wan pat pan tri pipul dɛn we gɛt hATTR kin gɛt amyloid dipɔsit na dɛn kidni. Yu nɔ go nid fɔ go to dis spɛshal pɔsin te yu gɛt sayn fɔ sik na yu kidni. Yu praymari kia dɔktɔ go chɛk yu kidni fɔ wok wit blɔd tɛst ɛvri ia (lɛk sɛrum kriaytinin ). If dɛn tɛst ya nɔrmal, dɛn go rifer yu to nefrɔlɔjis. |
| Ɔtpidik Spɛshal pɔsin | di pesin dεm we gεt hATTR de pan inkrεs risk fכ divεlכp di carpal tunnel syndrome . dis kin bi fכ di amyloid dεposit dεm na di wrist dεm. Dɛn kin se yu fɔ yuz splint na yu an ɛn ɛksesaiz we yu de slip. If tin tranga, i kin nid fɔ du ɔpreshɔn. |
| Fizik/Ɔkupeshɔn Tɛrapist | hATTR kin mek i nɔ izi fɔ waka ɛn du tin dɛn we pɔsin kin du ɛvride. Di wan dɛn we de mɛn yu bɔdi ɛn di wan dɛn we de mɛn yu wok kin ɛp yu fɔ mek dɛn wok ya izi. Stɔdi dɔn sho se if yu miks dɛn tritmɛnt ya wit ɔda tritmɛnt dɛn lɛk mɛrɛsin, dat kin mek yu gɛt gud tin fɔ du. |
| Praymari Keya Prɔvayda | Ivin if yu si bɔku spɛshal pipul dɛn, yu famili dɔktɔ ɔ praymari kia dɔktɔ na impɔtant pat pan yu tim. I kin du yu wɛl bɔdi chɛk-ap ɛvri ia, trit yu we yu sik, ɛn akt lɛk di "lida" fɔ yu wɛlbɔdi tim, fɔ tɔk to ɔl di ɔda dɔktɔ dɛm. |
Bɔrku tɛm, yu go ebul fɔ gɛt ɔl di savis dɛm wae yu nid na mɛdikal sɛnta ɔr big ɔspitul we spɛshal fɔ trit hATTR amyloidosis. Dis kin mek am izi fɔ ɔl yu dɔktɔ dɛn fɔ wok togɛda as tim. Tɔk to yu praymari kia dɔktɔ bɔt aw fɔ kɔdinɛt yu tritmɛnt.
Mɛsej we dɛn kin kɛr go na os
- hATTR amyloidosis na wan kɔmpleks sik we de afɛkt bɔku ɔgan dɛn na di bɔdi, so i nid fɔ gɛt wan tim fɔ dɔktɔ dɛn we gɛt difrɛn ɛkspɛriɛns fɔ trit am.
- Yu mɛdikal tim kin gɛt spɛshal pipul dɛn we sabi bɔt nyurolɔji, kadyolɔji, ɔftalmɔlɔji, ɛn nɛfrɔlɔji.
- Yu praymari kia dɔktɔ (famili dɔktɔ) na di men link we de kɔdinɛt dis ɔl tim.
- Tɔk opin wan wit yu mɛdikal tim bɔt yu sik, tritmɛnt, ɛn ɛnitin we de mɔna yu. Nɔ fred fɔ aks kwɛstyɔn. Yu na aktif mɛmba na yu wɛlbɔdi tim.
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