Wae yu dɔktɔ tɛl yu ɔr pɔrsin wae yu lɛk se dɛn gɛt Gaucher sik, yu kin fil fɔ shɔk ɛn frayd. Dat na nɔmal tin. Bɔt de impɔtant tin na dat, bɔrku gud tritmɛnt de tide wae kin ɛp yu fɔ liv fayn layf wit dis sik. Pan ɔl we no mɛrɛsin nɔr de fɔ dis sik, di tritmɛnt dɛm wae de naw kin ɛp yu fɔ mek yu nɔr pwɛl yu ɔgan dɛm ɛn kɔntrol yu sayn dɛm so dat yu go liv wɛl layf. So nɔ wɔri, lɛ wi tɔk bɔt am ditayli.
Sɔm tritmɛnt dɛn kin fayn fɔ big pipul dɛn nɔmɔ. Dɛn mek ɔda tritmɛnt dɛn fɔ sɔm kayn Gaucher sik. Dɔn bak, if yu ɔ yu pikin gɛt sɔm kayn sik dɛn we nɔ kin izi fɔ yu, yu nɔ go nid ɛni tritmɛnt atɔl. If na so i bi, yu go nid fɔ si if yu sik dɛn de bɛtɛ ɛn jɔs bigin fɔ trit am if nid de. Na yu dɔktɔ kin disayd ɔl dis.
Men we fɔ trit: Ɛnzaym Riplesmɛnt Tɛrapi (ERT) .
Dis na di tritmɛnt we dɛn kin yuz pas ɔl ɛn we kin wok fayn. Big pipul ɛn pikin dɛm wae gɛt Tayp 1 ɛn Tayp 3 Gaucher sik kin gɛt dis tritmɛnt.
Fɔ tɔk am simpul wan, Gaucher sik na wan sik we di bɔdi in ebul fɔ mek wan patikyula ɛnzaym de ridyus. Dis kin mek sɔm fat dɛn we de na di bɔdi nɔ kin ebul fɔ brok fayn ɛn dɛn kin put am na say dɛn lɛk di liva, di splin, ɛn di bon mɛro. Enzyme Replacement Therapy (ERT) involv fכ gi di bכdi di εnzym we nכ de na do, as injεkshכn.
Dis tritmɛnt tan lɛk fɔ chenj layt bɔl we dɔn brok na wi os wit nyu wan. I de ɛp di bɔdi fɔ wok fayn bak bay we i de gi wetin nɔ de frɔm do.
Wetin na di bɛnifit dɛn we ERT tritmɛnt kin gi?
- Fɔ mek di liva ɛn splin we dɔn swɛl yɔŋ bak: Dɛn ɔgan ya we dɔn big bikɔs ɔf di sik, dɛn kin mek dɛn smɔl bak ɛn dɛn kin wok fayn.
- Ridyus Anemia: Dis kin ɛp fɔ kɔntrol anemia, we kin mek bɔku pipul dɛn taya ɛn wik.
- Fɔ mek di bon dɛn strɔng: I de mek di bon dɛn nɔ gɛt pen, i de mek dɛn strɔng, ɛn i de mek dɛn nɔ brok izi wan.
Bɔt i impɔtant fɔ mɛmba se ERT nɔ kin rili wok fɔ kɔntrol di bren ɔ di nervɔs sistɛm simptom dɛm (lɛk fɔ siz) we kin apin pan tayp 3 Gaucher sik. Dis na bikɔs di drɔg nɔ gɛt bɛtɛ pawa fɔ pas frɔm wi blɔd ɛn go insay di bren (di blɔd-bren barɛri).
Tri men kayn ERT drɔgs de we dɛn de yuz naw:
- Imigluserase (Imiglucerase - Sεrizaym) .
- Taliglucerase alfa (Taligluserase alfa - Ɛliso) .
- Velagluserase alfa (VPRIV) we de mek di bɔdi.
Dɛn kin gi dis mɛrɛsin as salin sɔlvushɔn (IV drɔg), tru wan smɔl tiub insay wan vein. Yu kin gɛt fɔ go na ɔspitul ɔ klinik ɛvri tu wik fɔ gɛt dis tritmɛnt insay 1-2 awa.
Medikeshɔn dɛn we dɛn kin yuz fɔ it
Apat frɔm di ERT tritmɛnt, dɛn gɛt bak pils dɛn we dɛn kin tek bay mɔt we dɛn kin tek. Dɛn kin gi dɛn tin ya fɔ big pipul dɛn we gɛt Tayp 1 Gaucher sik. Dɛn pils ya de wok bay we dɛn de ridyus di bɔku bɔku fat dɛn we de na di bɔdi we wi bin dɔn tɔk bɔt.
| Nem fɔ di drɔg | Diskripshɔn ɛn aw fɔ yuz am |
|---|---|
| Eliglustat (Eliglustat - Sɛrdelga) we de na di wɔl. | Dis na nyu mɛrɛsin we nɔ tu te. I nid fɔ tek am tu tɛm insay di de. Bɔt fɔ sɔm pipul dɛn we kin brok dis mɛrɛsin kwik kwik wan na dɛn bɔdi (fast metabolizers), i nɔ kin wok fayn. |
| Miglustat (Miglustat - Zaveska) we de na di wɔl. | Dɛn kin gi dis to big pipul dɛn we gɛt mild to mɔdaret tayp 1 Gaucher sik we nɔ bin dɔn ansa to ERT tritmɛnt. Wan kapsul fɔ tek tri tɛm insay di de. |
Ɔda adjuvant tritmɛnt dɛn
Bɔku ɔda tritmɛnt dɛn de fɔ kɔntrol di difrɛn prɔblɛm dɛn we kin kam wit di sik we dɛn kɔl Gaucher.
Tritmɛnt fɔ di bon dɛn we wik
Bɔn wik ɛn pen na tin we kin apin pan Gaucher sik. Dɛn kin yuz wan klas ɔf drɔgs we dɛn kɔl bisphosphonates fɔ ɛp fɔ dis sik. Dɛn tin ya kin wok bay we dɛn kin mek di bon dɛn strɔng. εgzampl dεm na alendronate (Fosamax) εn pamidronate (Aredia). Dɛn tin ya fayn fɔ pikin dɛn ɛn big pipul dɛn.
Tritmɛnt dɛn fɔ Pen
Yu kin yuse kɔmɔn pen kil fɔ tin dɛm lɛk bɔdi pen ɛn joyn pen.
- Fɔ smɔl pen: Mɛrɛsin lɛk asetaminofɛn (Tylenol) ɔ ibuprofen (Advil, Motrin).
- Fɔ siriɔs pen: Yu kin nid fɔ tek strɔng pen kil frɔm di opioid grup, lɛk aw yu dɔktɔ tɛl yu.
Apat frɔm dat, sɔntɛnde, mɛrɛsin wae de mek pɔrsin fil bad ɔr mɛrɛsin wae de mek yu mɔsul rilaks kin ɛp fɔ kɔntrol di pen.
Ɔpreshɔn
Pan ɔl we bɔku tɛm dɛn kin ebul fɔ kɔntrol di sik wit mɛrɛsin, sɔm tɛm dɛn de, dɛn kin nid fɔ du ɔpreshɔn pan am.
- Spleen Ɔpreshɔn: If di splin we dɔn swel nɔ shrink afta ERT tritmɛnt ɛn kɔntinyu fɔ mek prɔblɛm, yu dɔktɔ kin se yu fɔ ɔpreshɔn fɔ pul di splin.
- Jɔyn Riplesmɛnt Ɔpreshɔn: If di sik dɔn pwɛl di jɔyn dɛn bad bad wan (e.g. di hip jɔyn) ɛn di pen so bad dat yu nɔ go ebul fɔ waka, dɛn kin du ɔpreshɔn fɔ riples da jɔyn de wit atifishal jɔyn. Dis kin ridyus di pen ɛn alaw fɔ muv bɛtɛ bak.
Transplant fɔ Bɔn Mɛrɔ
Dis na tritmɛnt we rili risky ɛn we nɔ kin bɔku fɔ di Gaucher sik. I min se dɛn fɔ chenj di blɔd sɛl dɛn we dɔn pwɛl wit di wan dɛn we gɛt wɛlbɔdi. Bɔt stil, no klia pruf nɔ de fɔ se i sef ɛn if i wok we yu kɔmpia am wit standad tritmɛnt dɛn lɛk ERT. So, dɛn kin jɔs tink bɔt am pan rili spɛshal kes dɛn usay nɔ ɔda tritmɛnt nɔ dɔn wok.
Blɔd Transfyushɔn
Dis kin fayn fɔ pipul dɛm wae gɛt pasmak anemia wae de kam wit Gaucher sik. If yu gi blɔd, dat kin mek di rɛd blɔd sɛl dɛn bɔku, ɛn dis kin mek di bɔdi gɛt trɛnk ɛn trɛnk bak.
Di impɔtant tin bɔt layf: it ɛn ɛksesaiz
Apat frɔm we yu de gɛt tritmɛnt, i rili impɔtant bak fɔ mek yu kɔntinyu fɔ liv fayn layf ɛn gɛt wɛlbɔdi.
- Fɔ it we gɛt fayn fayn tin dɛn: I impɔtant fɔ it tin dɛn we gɛt bɔku kalsiɔm ɛn vaytamɛn D , mɔ fɔ mek yu bon dɛn strɔng. Put tin dɛn lɛk milk, yogɔt, chiz, grɛn vɛjitebul, ɛn smɔl fish insay yu it.
- Ɛksesaiz: Tɔk to yu dɔktɔ ɛn du ɛksesaiz we fayn fɔ yu ɛn we nɔ tu at fɔ yu jɔyn dɛn. Tin dɛn lɛk fɔ waka ɛn swim kin fayn.
- Sɔplɛnt: If yu dɔktɔ tink se yu nɔ de gɛt inof vaytamɛn D ɔ kalsiɔm frɔm yu it, i kin tɛl yu fɔ tek supamakit.
Fɔ dɔn, sayɛnsman ɛn dɔktɔ dɛn de du risach ɔltɛm bɔt nyu tritmɛnt fɔ di sik we dɛn kɔl Gaucher. Dɛn kɔl dɛn tin ya klinik trial . Dɛn tray ya kin mek yu ebul fɔ tray nyu tritmɛnt dɛn we nɔ de yet fɔ bɔku pipul dɛn. Tɔk to yu dɔktɔ bɔt if yu go ebul fɔ tek pat pan wan pan dɛn trial ya.
Mɛsej we dɛn kin kɛr go na os
- Gaucher Disease nɔto sik we pɔsin fɔ fred ɛn giv-ɔp pan. Sɔm tritmɛnt dɛn de tide we go ɛp yu fɔ kɔntrol di sik dɛn we yu gɛt ɛn liv gud layf.
- Di men tritmɛnt na ɛnzaym riplesmɛnt tɛrapi (ERT). Apat frɔm dat, dɛn kin yuz mɛrɛsin dɛn bak we dɛn kin tek bay mɔt, mɛrɛsin dɛn we de mek dɛn bon strɔng, ɛn mɛrɛsin dɛn we de mek pɔsin fil pen.
- Sɔntɛnde, dɛn kin jɔs du ɔpreshɔn if mɛrɛsin nɔ ebul fɔ kɔntrol di sik.
- Apat frɔm we yu de gɛt tritmɛnt, i rili impɔtant bak fɔ it gud it we gɛt bɔku kalsiɔm ɛn vaytamɛn D ɛn du ɛksɛsayz we go fayn fɔ yu.
- Di tin we impɔtant pas ɔl na fɔ de tɔk to yu dɔktɔ ɔltɛm ɛn fala wetin i tɛl yu fɔ du. Tɔk to am opin wan bɔt ɛni kwɛstyɔn, fred, ɔ dawt we yu gɛt.
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