Sɔntɛm yu nɔ bin dɔn yɛri bɔt Fabry Disease bifo. Na wan sik wae kin pasmak, as na wan kayn sik wae nɔr kin bɔrku pan jɛnɛtiks. Bɔt if dɛn dɔn no se yu ɔ sɔmbɔdi na yu famili gɛt dis sik, i go fayn fɔ mek yu fil se yu at pwɛl. Bɔt mɛmba se pan ɔl we no mɛrɛsin nɔ de fɔ dis sik, bɔku gud tritmɛnt dɛn de tide we go ɛp yu fɔ liv nɔmal layf as yu ebul. Lɛ wi tɔk bɔt dɛn tritmɛnt ya tide.
Men tritmɛnt we dɛn kin yuz: Ɛnzaym Tɛrapi
Fɔ tɔk am simpul wan, Fabry sik kin kam bikɔs wan ɛnzaym we impɔtant fɔ wi bɔdi nɔ de wok fayn ɔ nɔ de wok fayn. So di men gol fɔ tritmɛnt na fɔ sɔlv dis prɔblɛm. Tu men we dɛn de fɔ du dis.
1. Ɛnzaym Riplesmɛnt Tɛrapi (ERT) .
dis involv fכ riples di εnzym `alpha-galactosidase A (alpha-Gal A)` we nכ de na yu bכdi. I tan lɛk se yu de ad ɔyl to motoka we ɔyl nɔ de bɔku. dis tritmεnt de gi tru wan vein (wan `IV` infushכn). Bɔku tɛm i kin apin ɛvri tu wik . di men dכg we dεn apruv naw fכ dis na `agalsidase beta (Fabrazyme)`.
Ɛspɛshali if dɛn no se man gɛt dis sik, di dɔktɔ kin tɛl am fɔ bigin dis tritmɛnt wantɛm wantɛm, ilɛksɛf i nɔ gɛt ɛni sayn fɔ am. Di rizin fɔ dis na bikɔs ivin if yu nɔ fil ɛni prɔblɛm, di ɔgan dɛn we de insay lɛk di kidni ɛn di at kin dɔn bigin fɔ pwɛl. So if yu bigin tritmɛnt kwik kwik wan i go mek dɛn ɔgan dɛn de nɔ pwɛl .
Bɔku tɛm, uman dɛn nɔ kin gɛt Fabry sik. So yu dɔktɔ kin wet te yu bigin fɔ sho di sik ɔ te di tɛst sho se yu ɔgan dɛn dɔn pwɛl. Sɔm pipul dɛn kin gɛt kol ɛn fiva we dɛn de tek dis tritmɛnt. Bɔt nɔ wɔri, yu dɔktɔ go gi yu wan antihistamine fɔ ɛp fɔ mek dis nɔ apin.
2. Mɛrɛsin we dɛn kin tek bay mɔt
Dis na nyu tritmɛnt. di pill dεn kכl am `Migalastat (Galafold).` I de wok bay we i de εp yu bכdi in כwn εnzym `alpha-Gal A`, we nכ de wok fayn, fכ wok bεtεh. I izi fɔ tek pil pas fɔ mek dɛn injɛkt am na vein.
Bɔt i nɔ de wok fɔ ɔlman. Dis drɔg de wok pan less dan haf pan pipul dɛm wae gɛt Fabry sik. If i wok ɔ nɔ wok, i dipen pan sɔm chenj dɛn (jin muteshɔn) na yu jin dɛn. So bifo yu bigin dis tritmɛnt, yu dɔktɔ go du wan jenɛtik tɛst.
Aw fɔ kɔntrol di sayn dɛn we pɔsin kin gɛt?
Fabry sik kin mek yu gɛt difrɛn prɔblɛm dɛn. Di wan dɛn we kin bɔku pas ɔl na inflamɛns na di an ɛn fut, at sik, ɛn kidni sik. So apat frɔm di ɛnzaym tritmɛnt, yu dɔktɔ go mɔs gi yu ɔda mɛrɛsin fɔ ɛp fɔ kɔntrol dɛn sik ya.
| Simptom/Prɔblɛm | Di tritmɛnt we dɛn kin gi |
|---|---|
| Bɔrku inflamɛns ɛn pen na di an ɛn fut | Dɛn kin gi mɛrɛsin lɛk carbamazepine, gabapentin, ɔ phenytoin, we dɛn kin gi fɔ epilepsy fɔ kɔntrol pen. |
| Kidni de pwɛl ɛn i gɛt ay blɔd prɛshɔn | Dɛn kin gi yu blɔd prɛshɔn mɛrɛsin lɛk ACE inhibitor . Dɛn tin ya kin ɛp fɔ protɛkt di kidni dɛn we dɛn de kɔntrol di blɔd prɛshɔn. |
| Di at bit we nɔ de bit ɔltɛm | Dɛn kin nid ɔda mɛrɛsin dɛn fɔ di at fɔ mek di at wok fayn fayn wan. |
| Prɔblɛm dɛn we de na di dijestiv sistɛm (vomit, dayarɛa, bɛlɛ pen) . | Di dɔktɔ go gi yu di rayt mɛrɛsin bay we i de si dɛn sayn ya. |
| Prɔblɛm na di skin (smɔl smɔl blɔd vesel dɛn de apia) . | Wan dɔktɔ we de mɛn dɛn bɔdi kin pul dɛn tin ya wit simpul tritmɛnt dɛn. |
| Prɔblɛm fɔ yɛri (ring na yu yes, diziz, yu nɔ de yɛri) . | Yu kin avɔyd dɛn prɔblɛm ya if yu yuz tin dɛn fɔ ɛp yu fɔ yɛri . |
Test dɛm wae de monitar di sik stetmɛnt
Bikɔs Fabry sik kin afɛkt yu ɔl bɔdi, di sayn dɛm kin wɔs as yu de ol. I impɔtant fɔ de pan tap pan yu wɛlbɔdi biznɛs. Dis inklud fɔ chɛk-ap ɔltɛm fɔ di dɔktɔ dɛn .
- Blɔd tɛst: Dɛn tin ya kin ɛp fɔ chɛk yu rɛd ɛn wayt blɔd sɛl dɛn, di ilɛktrɔlayt lɛvɛl, ɛn aw yu kidni ɛn liva de wok.
- Yurin tɛst: Chɛk fɔ si if i gɛt prɔtin ɔ blɔd na di urine. Dis kin bi wan fɔs sayn fɔ sik na di kidni.
- ECG (Electrocardiogram): Dis de rεkכd di ilektrikal signal dεm na di at εn de chεk fכ di at bit we nכ de bit.
- Echocardiogram: Dɛn kin tek pikchɔ fɔ di at bay we dɛn de yuz sawnd wev. dis kin yus fכ chεk fכ prכblεm wit di at in valv dεm εn chεmba dεm.
- Tɛst fɔ yɛri: I fayn fɔ mek dɛn du dis tɛst wan tɛm insay di ia.
- Bren imej: Dis tɛst we dɛn kin du lɛk ɛvri tu ia, kin luk fɔ chenj dɛn na di blɔd vesel dɛn na di bren. Dis kin ɛp fɔ no di fɔs sayn dɛm fɔ strok.
Di mɛdikal tim we de ɛp yu
Insay dis kayn sik, nɔto yu famili dɔktɔ nɔmɔ go trit yu. Wan tim we gɛt spɛshal pipul dɛn we sabi du difrɛn tin dɛn go ɛp yu. Dipen pan yu sayn dɛm, yu kin nid fɔ go to dɛn spɛshal pipul ya wan tɛm insay di ia.
- Nyurolɔjis: Fɔ prɔblɛm dɛn we gɛt fɔ du wit di bren ɛn di nervɔs sistɛm.
- Cardiologist: Fɔ prɔblɛm dɛn we gɛt fɔ du wit at.
- Nefrɔlɔjis: Fɔ prɔblɛm dɛn we gɛt fɔ du wit di kidni.
- Ɔftalmɔlɔjis: Fɔ prɔblɛm dɛn we gɛt fɔ du wit yay.
Mɛsej we dɛn kin kɛr go na os
- Pan ɔl we dɛn nɔ kin ebul fɔ mɛn Fabry Disease ɔltogɛda, dɛn kin ebul fɔ mɛn am fayn fayn wan wit di tritmɛnt dɛm wae de naw ɛn pipul dɛm kin liv nɔrmal layf.
- Tu men tritmɛnt dɛn de: intravenɔs ɛnzaym tɛrapi (ERT) ɛn ɔral tablɛt (Migalastat). Yu dɔktɔ go disayd uswan go fayn fɔ yu.
- Fɔ kɔntrol di sayn dɛm lɛk pen, at sik, ɛn kidni sik rili impɔtant fɔ mek yu gɛt bɛtɛ layf.
- I impɔtant fɔ mek dɛn du mɛdikal ɛgzamɛn di rayt tɛm ɛn kɔntinyu fɔ tɔk to di spɛshal mɛdikal tim ɔltɛm.
- Tɔk to yu dɔktɔ opin wan ɛn ɔnɛs wan bɔt yu sik, di tritmɛnt we yu go gɛt, ɛn ɛnitin we de mɔna yu. Nɔ fred, dɛn rɛdi fɔ ɛp yu ɔltɛm.
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