Lɛ wi lan bɔt di Alglucosidase alfa vaysin fɔ Pompe Disease?

Wi bɔdi na, fɔ tɔk di kɔrɛkt tin, wan mashin we rili kɔmpleks, we wɔndaful. fכ mek כltin we de insay dis mashin wok fayn fayn wan, wan spεshal kayn protin we dεn kכl ‘εnzym' implεnt. Imajin, sɔmtɛm bikɔs ɔf di jɛnɛtik rizin, wan patikyula ɛnzaym nɔ kin kɔmɔt na pɔsin in bɔdi ɔ i kin mek smɔl. Pompe Disease na wan sik wae nɔr kin bɔrku bɔt wae kin siriɔs wae kin apun dis kayn wae. Tide wi go tɔk bɔt wan spɛshal tritmɛnt we dɛn kin gi fɔ kɔntrol dis sik, dat na wan vaysin we dɛn kɔl Alglucosidase alfa.

Wetin na Alglucosidase alfa?

Fɔ tɔk am simpul wan, Alglucosidase alfa na ɛksternal injɛkshɔn fɔ di ɛnzaym we nɔ de na di bɔdi fɔ pɔsin we gɛt Pompe sik. Dis tan lɛk fɔ briŋ pɔsin we de na do fɔ du wan patikyula wok we pɔsin we de wok fɔ am nɔ de. Dɛn kɔl dis tritmɛnt we dɛn kɔl Enzyme Replacement Therapy (ERT) insay mɛdikal sayɛns.

De tin wae impɔtant pas ɔl fɔ mɛmba ya na dat dis nɔr de mɛn dis sik. Bɔt dis tritmɛnt kin kɔntrol di sik dɛn, i kin mek di mɔsul dɛn wik, ɛn i kin rili ɛp di pɔsin in kwaliti fɔ liv. yu kin fכn dis dכg na di mכket כnda brand nem dεm lεk `Lumizyme` כ `Myozyme`.

Tin dɛm wae yu fɔ tɛl yu dɔktɔ bifo yu tek dis mɛrɛsin

Bifo yu bigin ɛni patikyula tritmɛnt, i rili impɔtant fɔ tɛl yu dɔktɔ bɔt yu kɔmplit wɛlbɔdi istri. Di mɔ yu dɔktɔ dɔn kɔmplit yu wɛlbɔdi, na di mɔ di tritmɛnt go sef ɛn go wok fayn. So, if ɛni wan pan dɛn tin ya apin to yu, mek shɔ se yu tɔk bɔt am.

• At sik: If yu gɛt ɛni at sik ɔr prɔblɛm we gɛt fɔ du wit at.
• Respiratory distress: If yu gɛt lɔng kɔndishɔn ɔr ɛni prɔblɛm fɔ blo.
• Alɛji: If yu gɛt ɛni alɛji to ɛnitin, yu fɔ rili tɛl wi. Mɔ:
• If yu bin dɔn gɛt alɛji fɔ dis mɛrɛsin ɔ ɛni wan pan di tin dɛn we de insay am, lɛk manitol.
• If yu gɛt alɛji to hamsta ɔ rat prɔtin (dis impɔtant bikɔs dɛn kin yuz dɛn tin ya fɔ mek sɔm mɛrɛsin dɛn).
• If yu gɛt alɛji to ɛni ɔda mɛrɛsin, it, prɛzɛvɛtiv ɔ day.
• Bɛlɛ: If yu gɛt bɛlɛ naw, ɔ yu de tray fɔ gɛt bɛlɛ insay di nɛks tɛm.
• If yu na mama we de gi pikin in bɛlɛ: If yu na mama we de gi pikin in bɛlɛ.

Aw dɛn kin gi dis tritmɛnt?

Dis mɛrɛsin nɔto pil fɔ swɛla, ɛn nɔto injɛkshɔn we pɔsin kin gi na os.

Dɛn kin jɔs gi dis tritmɛnt na ɔspitul ɔ spɛshal klinik, ɛn dɔktɔ dɛn ɛn di wan dɛn we de wok na di nɔs dɛn kin wach dɛn gud gud wan . Dɛn go de wach yu at ɔltɛm, yu blɔd prɛshɔn, ɛn aw yu de blo we dɛn de du di tritmɛnt.

Yu kin gi dis to smɔl pikin dɛn?

Yɛs, dɛn kin gi dis tritmɛnt ivin fɔ pikin dɛn we yɔŋ lɛk wan mɔnt. Bɔt na dɔktɔ we de mɛn pikin dɛn nɔmɔ go disayd fɔ du dat. Speshal tin dɛn de we yu fɔ tek tɛm wit we yu de gi pikin dis tritmɛnt.

Wetin fɔ du if yu tek di mɛrɛsin pasmak?

Dɛn kin gi dis na ɔspitul, so di chans fɔ mek dis apin rili smɔl. Bɔt if yu tink se yu dɔn tek dis mɛrɛsin tumɔs, tɛl di dɔktɔ dɛn wantɛm wantɛm. If ɛnitin apin, yu kin kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Kɔlɔmbɔ Nashɔnal Ospital . Ɔ yu fɔ go na di Imejɛnsi Tritmɛnt Yunit (ETU) we de nia yu .

Wetin a go du if a mis di tritmɛnt?

I rili impɔtant fɔ atɛnd di apɔntinmɛnt we yu dɔn plan fɔ du. If fɔ sɔm rizin yu nɔ ebul fɔ atɛnd, nɔ skip am, bɔt kɔl yu dɔktɔ ɔ ɔspitul wantɛm wantɛm fɔ arenj ɔda de ɛn tɛm.

Wetin na di sayd ɛfɛkt dɛm we dɛn kin ɛkspɛkt?

Jɔs lɛk ɛni ɔda mɛrɛsin, dis tritmɛnt kin gɛt sɔm sayd ɛfɛkt dɛn. Pan ɔl we bɔku pan dɛn tin ya na smɔl smɔl tin dɛn, sɔm tin dɛn de we wi fɔ tek tɛm mɔ bɔt. Lɛ wi luk dis na tebul fɔ mek i izi fɔ ɔndastand.

Ɛni prɔblɛm de wit ɔda mɛrɛsin dɛn?

Dis mɛrɛsin kin jɔs gɛt smɔl intarakshɔn wit ɔda mɛrɛsin dɛn. Bɔt i impɔtant fɔ tɛl yu dɔktɔ bɔt ɔl di mɛrɛsin dɛn we yu de tek (inklud vaytamɛn ɛn ɛbul prɔdak dɛm), ɛn if yu de smok ɔ drink rɔm.