Sɔm sik dɛn nɔ kin bɔku. Ɛn fɔ liv wit dɛn na big prɔblɛm. Mucopolysaccharidosis VI, ɔ MPS VI ɔ Maroteaux-Lamy syndrome, na wan pan dɛn kayn sik ya we nɔ kin bɔku, we kin kɔmɔt frɔm dɛn jɛnɛtiks. Galsulfase na spɛshal tritmɛnt we de briŋ rilif to di wan dɛn we de sɔfa wit dis sik. Tide wi de tɔk bɔt dis rili impɔtant tritmɛnt. If dɛn dɔn gi yu, yu pikin ɔ pɔsin we yu sabi dis tritmɛnt, dis atikul go rili fayn fɔ yu.
Wetin na Galsulfase?
Fɔ tɔk am simpul wan, Galsulfase na wan tritmɛnt we de tek di ɛnzaym in ples. Naw lɛ wi si wetin dat min.
Tink bɔt wi bɔdi lɛk big faktri. Dis faktri gɛt spɛshal wokman dɛn fɔ du difrɛn wok dɛn. Dɛn wokman ya na wetin wi kɔl ɛnzaym . insay MPS VI, wan spεshal εnzym we nid fכ brok dכn kכmpleks shuga dεm na wi bכdi, di bכdi nכ de prodyuz am we dεn bכn am כ i nכ de prodyuz bכku bכku wan.
So we dis ɛnzaym dɔn lɔs, dɛn shuga dɛn de kin bigin fɔ gɛda insay di bɔdi in sɛl dɛn. Dis na wae mek difrεn כgan dεm lεk bon, at, lכng, εn yay kin pwεl εn di sayn dεm kin sho.
Dis mɛrɛsin we dɛn kɔl Galsulfase de wok bay we i de gi di bɔdi da ɛnzaym we nɔ de kɔmɔt na do. We dis mɛrɛsin go insay di bɔdi, i kin brok di shuga dɛn we dɔn gɛda ɛn ɛp fɔ kɔntrol di sayn dɛm. Di brand nem fɔ dis mɛrɛsin na Naglazyme.
Impɔtant: Dis nɔto mɛrɛsin fɔ di sik. Bɔt i kin gi bɔku rilif bay we i de kɔntrol di sayn dɛm ɛn mek in layf bɛtɛ.
Tin dɛm wae yu fɔ tɛl yu dɔktɔ bifo yu bigin tritmɛnt
Bifo yu bigin dis tritmɛnt, i rili impɔtant fɔ tɛl yu dɔktɔ bɔt yu kɔmplit wɛlbɔdi istri. Mek shɔ se yu tɛl dɛn mɔ bɔt dɛn tin ya:
| Infɔmeshɔn we yu nid fɔ gi | Wetin mek dat impɔtant? |
|---|---|
| Alɛji dɛn we pɔsin kin gɛt | Tɛl yu dɔktɔ if yu gɛt ɛni alɛji fɔ gliklazayd, ɔda mɛrɛsin, it, ɔ hamsta prɔtin. Dis impɔtant bikɔs dɛn kin yuz dɛn tin ya fɔ mek sɔm mɛrɛsin dɛn. |
| Snor ɔ slip apnɛa | Sɔm pipul dɛm wae gɛt MPS VI kin gɛt slip apnea. Dis mɛrɛsin kin chenj dis sik, so yu dɔktɔ fɔ no bɔt dis. |
| Fiva ɔ infekshɔn | If yu gɛt infekshɔn naw, lɛk kol ɔ flu, duya tɛl wi bɔt am bifo yu gɛt tritmɛnt. |
| Bɛlɛ ɔ we yu de gi pikin in bɛlɛ | If yu gɛt bɛlɛ, yu de tray fɔ gɛt bɛlɛ, ɔ yu de gi pikin in bɛlɛ, mek shɔ se yu tɛl yu dɔktɔ bifo yu gɛt tritmɛnt. |
Aw dɛn kin gi dis tritmɛnt?
Dis nɔto mɛrɛsin we yu kin kɛr go na os.
- Injεkshכn insay vein: Dis na tritmεnt we dεn kin gi insay vein, lεk salin. Insay mɛrɛsin, wi kin kɔl dis infushɔn we dɛn kin put insay di bɛlɛ .
- Na ɔspitul ɔ klinik: Na dɔktɔ ɔ nɔs we gɛt trenin kin gi dis tritmɛnt na ɔspitul ɔ spɛshal klinik.
- Aw fɔ tek am: Dis tritmɛnt kin tek sɔm awa fɔ gi yu, ɛn insay da tɛm de dɛn go kip yu ɔnda dɔktɔ.
Dis fayn fɔ pikin dɛn?
Yɛs, dɛn kin gi dis tritmɛnt bak to pikin dɛn we dɔn pas 5 ia. Bɔt dɛn kin no di doz wit spɛshal kia, we dɛn tink bɔt tin dɛn lɛk di pikin in kɔndishɔn ɛn in wet. So, if yu de gi yu pikin dis tritmɛnt, tɔk to yu dɔktɔ we de mɛn pikin dɛn bɔt am.
Wetin fɔ du if yu mis wan doz?
I rili impɔtant fɔ gɛt dis tritmɛnt di de ɛn tɛm we dɛn dɔn sɛtul fɔ mek dis tritmɛnt go bifo. If fɔ sɔm rizin yu nɔ ebul fɔ kam fɔ di tritmɛnt di de we dɛn dɔn sɛtul, nɔ skip am. Kɔl yu dɔktɔ ɔ ɔspitul kwik kwik wan ɛn arenj ɔda de.
Wetin fɔ du if di doz fɔ di mɛrɛsin go ɔp (ɔvados)?
Bikɔs dɛn kin gi dis na ɔspitul, ɔnda dɔktɔ in sɔpɔtishɔn, di chans fɔ mek dɛn tek am pasmak kin rili smɔl. Bɔt if yu tink se dis dɔn apin, tɛl di dɔktɔ dɛn wantɛm wantɛm. If nid de, dɛn go kɔntak di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Kɔlɔmbɔ Nashɔnal Ospital fɔ advays, ɔ rifer yu to di Imejɛnsi Tritmɛnt Yunit (ETU) .
Wetin na di sayd ɛfɛkt dɛn we di mɛrɛsin kin gɛt?
Jɔs lɛk ɛni mɛrɛsin, sɔm sayd ɛfɛkt kin apin wit galsulfase. Sɔm pan dɛn tin ya kin siriɔs, so i impɔtant fɔ no bɔt dɛn.
| Sayd ɛfɛkt dɛn we dɛn fɔ ripɔt to di dɔktɔ wantɛm wantɛm | |
|---|---|
| 🔴 Alɛji riakshɔn | Skin rash, it, swel na di fes, lip ɔ tong. |
| 🔴 Prɔblɛm fɔ blo | I nɔ izi fɔ blo, i de swɛt. |
| 🔴 Chɛst de pen | Fɔ fil se yu chɛst tayt ɔ yu de fil pen. |
| 🔴 Ɔda siriɔs sayn dɛm | Vishɔn chenj, yes pen ɔ infekshɔn, diziz, fiva ɔ kol, ay blɔd prɛshɔn. |
| Bɔku tɛm i nɔ kin siriɔs (bɔt tɛl yu dɔktɔ if i kɔntinyu fɔ de) . | |
| 🟢 Bɔdi pen (Aches ɛn pen) . | Pen na di mɔsul ɛn jɔyn dɛn. |
| 🟢 Prɔblɛm dɛn we de na di dijestiv sistɛm | Bɛlɛ de at, nɔs, vɔmit, dayarɛa. |
| 🟢 Ɔda smɔl smɔl tin dɛn | Ɛd we de at, we pɔsin taya. |
Dis list nɔ de inklud ɔl di sayd ɛfɛkt dɛn we pɔsin kin gɛt. If yu gɛt ɛni ɔda sayn, duya tɛl yu dɔktɔ.
Ɔda mɛrɛsin dɛm wae kin miks wit dis mɛrɛsin
Sɔm mɛrɛsin kin miks wit gliclazide. Fɔ ɛgzampul:
- Klorokin we dɛn kɔl
- Jɛntamisin we dɛn kɔl
- Haydroksiklɔrokin we dɛn kɔl
Dis nɔto wan kɔmplit list. So, tɛl yu dɔktɔ bɔt ɔl di mɛrɛsin dɛn we yu de tek (dɛn prɛskrib, ɔva-di-kɔnta, vaytamɛn, tradishɔnal mɛrɛsin, Ayurveda mɛrɛsin). Dɔn bak, tɛl am if yu de smok ɔ drink rɔm.
Wi no se fɔ liv wit dis kayn sik we nɔ kin apin so ɔltɛm nɔ kin izi. Bɔt di tritmɛnt dɛm wae de naw lɛk dis kin ɛp yu fɔ kɔntrol yu sik dɛm ɛn liv bɛtɛ layf. Di tin we impɔtant pas ɔl na fɔ kɔntinyu fɔ gɛt padi biznɛs wit yu dɔktɔ ɔltɛm ɛn fala dɛn advays kɔrɛkt wan.
Mɛsej we dɛn kin kɛr go na os
- Galsulfase na wan ɛnzaym riplesmɛnt tɛrapi we de kɔntrol di sayn dɛm fɔ wan sik we nɔ kin bɔku we dɛn kɔl MPS VI. I nɔ de mɛn di sik ɔltogɛda.
- Dɛn kin gi dis tritmɛnt na ɔspitul ɔ klinik, tru wan vein. Dɛn nɔ go ebul fɔ kɛr am go na os ɛn yuz am.
- Bifo yu bigin fɔ trit yu, i impɔtant fɔ tɛl yu dɔktɔ bɔt ɔl di alɛji dɛn we yu gɛt, ɔda mɛrɛsin dɛn, ɛn ɔl di mɛrɛsin dɛn we yu de tek.
- If yu gɛt siriɔs alɛji lɛk fɔ blo ɛn yu fes de swel, go to dɔktɔ wantɛm wantɛm.
- Nɔ mis di de we yu dɔn plan fɔ trit yu. If yu du dat, kɔl yu dɔktɔ wantɛm wantɛm.
💬 Comments (0)
No kɔmɛnt nɔ de yet. Ad yu kɔmɛnt ya fɔ di fɔs tɛm.
Ad yu kɔmɛnt