Yu ɔ yu pikin gɛt MPS I? Mek wi lan bɔt di Laronidase vaysin!

Sɔntɛnde, wi kin gɛt sik dɛn we wi nɔ kin ivin imajin, nɔto so? Wan pan dɛn kayn tin ya na Mucopolysaccharidosis I, we wi kɔl MPS I fɔ shɔt tɛm. Dis na tin we nɔ kin apin so ɔltɛm. If yu ɔ yu pikin gɛt dis sik, a ɔndastand aw i kin tranga ɛn i kin mek i strɛs. Bɔt nɔr wɔri, tritmɛnt dɛn de wae kin ɛp fɔ kɔntrol dɛn sik ya. Tide wi go tɔk bɔt wan pan dɛn kayn impɔtant mɛrɛsin ya, we na wan vaysin we dɛn kɔl Laronidase. Lɛ wi si wetin i de du ɛn aw dɛn de yuz am.

Us kayn mɛrɛsin na Laronidase?

Fɔ tɔk am simpul wan, Laronidase na mɛrɛsin we de mek wan spɛshal ɛnzaym we nɔ de ɔ we nɔ de na wi bɔdi kam bak. Imajin, dɛn ɛnzaym ya de ɛp ɔltin na wi bɔdi fɔ wok fayn fayn wan. Lɛk smɔl wokman dɛn. Naw, na di bɔdi fɔ pipul dɛn we gɛt MPS I, wan patikyula ɛnzaym nɔ de ɔ i nɔ de wok fayn. Dɛn kin gi dis mɛrɛsin fɔ ful-ɔp da prɔblɛm de. Dis kin ɛp fɔ kɔntrol sɔm pan de sayn dɛm fɔ dis sik. Bɔt wan tin we wi fɔ mɛmba na dat, dis nɔto mɛrɛsin we de mɛn di sik kpatakpata. Bɔt i kin ɛp bɔku bay we i de ridyus di sayn dɛm ɛn mek layf izi smɔl.

Sɔntɛnde yu kin si dis mɛrɛsin ɔnda di brand nem Aldurazyme. Dɛn kin yuz dis mɛrɛsin bak fɔ ɔda tin dɛn. If yu gɛt ɛni kwɛstyɔn bɔt am, aks yu dɔktɔ ɔ fama .

Wetin na de tin wae yu nid fɔ tɛl yu mɛdikal tim bifo yu bigin dis mɛrɛsin?

Bifo yu bigin dis Laronidase tritmɛnt, yu fɔ rili tɛl yu mɛdikal tim, dat na, di dɔktɔ ɛn di nɔs, bɔt dɛn tin ya. Na bikɔs i rili impɔtant fɔ lɛ dɛn no dɛn tin ya so dat dɛn go ɛp yu fayn fayn wan.

• Tɛl wi if yu dɔn ɛva gɛt alɛji fɔ dis mɛrɛsin, ɛni ɔda mɛrɛsin, it, day, ɔ tin dɛn we de mek yu nɔ pwɛl.
• If yu gɛt bɛlɛ ɔ yu op fɔ gɛt bɛlɛ, tɛl dɛn so.
• If yu na mama we de gi pikin in bɛlɛ, yu fɔ tɔk bɔt dat bak.

If yu tɛl dɛn dɛn tin ya ɛn yu nɔ ayd dɛn, dɛn go ebul fɔ trit yu di we we go fayn fɔ yu. Rayt?

Aw yu kin gɛt dis mɛrɛsin?

Laronidase dεn kin gi am as infushכ n insay wan vein. Dis nɔto mɛrɛsin we yu kin tek na os fɔ yusɛf.Na pɔsin we tren fɔ mɛn pipul dɛn we de wok na ɔspitul ɔ klinik kin gi am. Dat min se dɔktɔ ɔ nɔs go gi yu am. So natin nɔ de fɔ fred, dɛn sabi du am.

Yu tink se dɛn kin gi dis mɛrɛsin to smɔl pikin dɛn?

Yes, dɛn kin gi dis mɛrɛsin to pikin dɛn we yɔŋ lɛk 6 mɔnt pan sɔm kes dɛm we dɛn dɔn pik. Bɔt sɔm tin dɛn de we wi fɔ tek tɛm wit we wi de gi am to yɔŋ pikin dɛn. So, if yu de gi yu pikin dis mɛrɛsin, i go fayn fɔ mek yu tɔk bɔt am gud gud wan wit yu dɔktɔ we de mɛn pikin dɛn ɛn fɛn ɔl di ditil dɛm.

Wetin kin apin if yu tek bɔku mɛrɛsin?

Bikɔs dɛn kin gi dis mɛrɛsin ɔnda dɔktɔ in sɔpɔtishɔn, di chans fɔ mek dɛn tek am pasmak nɔ kin bɔku. Bɔt if yu tink se yu dɔn tek di mɛrɛsin tumɔs, ɔ if yu fil ɛnitin we nɔ kɔmɔn, yu fɔ kɔl pɔyzin kɔntrol sɛnta ɔ imejensi rum wantɛm wantɛm. Bɔt, a de ripit, di chans fɔ mek dis apin smɔl, bikɔs dɛn de gi dis ɔnda mɛdikal supavayshɔn.

Impɔtant: Dis mɛrɛsin na fɔ yu nɔmɔ. Nɔ ɛva sheb am wit ɔda pipul dɛn.

Wetin fɔ du if yu mis wan doz fɔ mɛrɛsin?

I rili impɔtant fɔ tek dis mɛrɛsin di rayt tɛm. If yu nɔ ebul fɔ go na ɔspitul ɔ klinik di de ɔ tɛm we dɛn dɔn sɛtul, ɔ if yu mis wan doz, kɔl yu dɔktɔ ɔ wɛlbɔdi pɔsin wantɛm wantɛm. Dɛn go tɛl yu wetin fɔ du nɛks.

Dis mɛrɛsin kin miks wit ɔda mɛrɛsin dɛn? (Intarakshɔn dɛn)

In jɛnɛral, dɛn nɔ kin tink se dis mɛrɛsin, Laronidase, go mek big big intarakshɔn wit ɔda mɛrɛsin dɛn. Dat min se, i nɔ kin riak bɛtɛ wit ɔda mɛrɛsin dɛn.

Bɔt dis nɔ min se prɔblɛm nɔ go de. So, i go fayn fɔ mek yu tɛl yu dɔktɔ bɔt ɔl di mɛrɛsin dɛn we yu de tek, nɔto jɔs di wan dɛn we yu dɔktɔ gi yu, bɔt di wan dɛn we yu de bay na di famasi (dɛrɛg dɛn we nɔ gɛt prɛskrishɔn), tradishɔnal mɛrɛsin dɛn (ɛrb), vaytamɛn dɛn (dietary supplements ). Dɔn bak, tɛl yu dɔktɔ if yu de smok, drink rɔm, ɔ yuz ɔda drɔgs. Sɔm tin kin intarakt wit yu mɛrɛsin sɔm kayn we. Dis list nɔ de diskraib ɔl di intarakshɔn we pɔsin kin gɛt.

Wetin na di tin dɛm we yu fɔ tek tɛm wit mɔ we yu de tek dis mɛrɛsin?

We dɛn gi yu dis mɛrɛsin, Laronidase, yu dɔktɔ dɛn go de wach yu sik gud gud wan.Dat min se dɛn de luk fɔ yu ɔltɛm.

I impɔtant bak fɔ go to yu dɔktɔ ɔltɛm fɔ si if yu sik dɛn de bɛtɛ ɔr de wɔs. If yu sik nɔr de bɛtɛ ɔr tan lɛk se yu de wɔs, mek shɔ se yu tɛl yu dɔktɔ ɔr pɔrsin wae de kia fɔ yu wɛl bɔdi biznɛs.

"Wan ɔda tin, fɔ ɔndastand mɔ bɔt MPS I ɛn in tritmɛnt dɛm, spɛshal rɛjista de we de gɛda di pɔsin in infɔmeshɔn. Tɔk to yu dɔktɔ bɔt fɔ put yu nem pan dis. I go bi big ɛp bak fɔ di fiuja risach bɔt dis sik."

Wetin na di sayd ɛfɛkt dɛm we dis mɛrɛsin kin gɛt?

Lɛk ɛni mɛrɛsin, dis Laronidase vaysin kin mek sɔm pipul dɛn gɛt sayd ɛfɛkt. Bɔt nɔto ɔlman kin gɛt dɛn. Sɔm sayd ɛfɛkt dɛn de we yu fɔ tɛl yu dɔktɔ wantɛm wantɛm if yu notis dɛn. Ɔda wan dɛn de we nɔ kin rili denja. Lɛ wi si wetin dɛn bi.

Di sayd ɛfɛkt dɛm we yu fɔ ripɔt to yu dɔktɔ wantɛm wantɛm:

"If yu gɛt ɛni wan pan dɛn sik ya, yu fɔ tɛl yu dɔktɔ ɔ wɛlbɔdi biznɛs pɔsin kwik kwik wan:"

• Alɛrgik riakshɔn : Dɛn tin ya na we yu gɛt skin rɔsh, it ɔ ayv, ɛn yu fes, lip, ɔ tɔng we de swel.
• Prɔblɛm dɛn we pɔsin kin gɛt we i de blo .
• Di chenj dɛn we de apin na di we aw pɔsin de si tin .
• Chɛst pen .
• Kɔf .
• Fiva .
• Di fut ɔ an dɛn we de swel .
• Di fes we de rɛd ɔ we i de flash .
• Lɔw blɔd prɛshɔn .
• Pen, tingling, swɛt na yu an ɔ fut .
• Rɛd, pen, ɔ swel na di say we dɛn injɛkt am .
• Di yay ɔ di skin we de yɔlɔ - Dis kin bi prɔblɛm wit di liva.

Sayd ɛfɛkt dɛn we nɔ kin nid dɔktɔ advays, bɔt dɛn fɔ ripɔt to di dɔktɔ if dɛn kɔntinyu fɔ de:

"Dis tin kin apin sɔmtɛm afta yu dɔn gɛt di vaysin. Bɔku tɛm, dɛn nɔ kin siriɔs, bɔt if dɛn kɔntinyu fɔ de, ɔ if dɛn de mɔna yu, i fayn fɔ tɛl yu dɔktɔ ."

• Smɔl bɔn ɔ sɔri na di say we dɛn gi di injɛkshɔn .

Dis list nɔto ɔl di sayd ɛfɛkt dɛn we pɔsin kin gɛt. If yu notis ɛni ɔda tin we nɔ tan lɛk se i rayt, tɔk to yu dɔktɔ. Yu kin ripɔt dɛn sayd ɛfɛkt ya bak to di FDA (Food and Drug Administration) na 1-800-FDA-1088.

Usay yu kin kip dis mɛrɛsin?

Dis nɔto tin we rili impɔtant, bikɔs dis mɛrɛsin nɔto sɔntin we yu kin kɛr go na os. Na ɔspitul ɔ klinik nɔmɔ dɛn kin gi am. So yu nɔ nid fɔ wɔri fɔ kip di mɛrɛsin sef, di mɛdikal wokman dɛn go tek kia ɔf dat.

Fɔ dɔn, di tin we impɔtant pas ɔl

Okay, so a op se yu naw geht beta andastan boht di Laronidase vaysin we wi bin tok boht. Mɛmba se dis na mɛrɛsin we dɛn kin gi ɔnda spɛshal dɔktɔ in sɔpɔt fɔ ɛp fɔ kɔntrol di sayn dɛm fɔ wan sik we nɔ kin apin so ɔltɛm we dɛn kɔl MPS I.

"If yu ɔ yu pikin de gɛt dis tritmɛnt, fala di dɔktɔ in instrɔkshɔn jɔs lɛk aw i tɛl yu. If yu gɛt ɛni kwɛstyɔn ɔ dawt, nɔ kip am to yusɛf. Dɛn de fɔ ɛp yu. Pan ɔl we dis mɛrɛsin nɔ go mɛn di sik ɔltogɛda, i go mek layf izi smɔl ɛn gi yu di trɛnk fɔ fɛt di sayn dɛm. Nɔ ɛva giv ɔp op! "

Dis liflet na sɔmari nɔmɔ. Sɔntɛm i nɔ go gɛt ɔl di infɔmeshɔn. If yu gɛt ɛni ɔda kwɛstyɔn bɔt dis mɛrɛsin, duya tɔk to yu dɔktɔ, fama, ɔ pɔsin we de kia fɔ yu wɛlbɔdi biznɛs.

` Laronidase, MPS I, Mucopolysaccharidosis I, Ɛnzaym tɛrapi, Aldurazaym, Sik dɛn we nɔ kin bɔku