Yu dɔn ɛva notis se yu urine dak smɔl, sɔntɛm i kin ivin gɛt blɔd, na mɔnin? Yu kin tray tranga wan fɔ fil taya ɔltɛm, ɛn fil lɛk se yu nɔ gɛt bɛtɛ trɛnk? Dɛn tin ya kin bi sayn dɛm fɔ wan blɔd sik we nɔ kin apin so ɔltɛm we bɔku pipul dɛn nɔ yɛri bɔt we dɛn kɔl PNH, ɔ Paroxysmal Nocturnal Hemoglobinuria. Nɔ fred we yu yɛri dis nem. Lɛ wi tɔk bɔt ɔltin simpul wan ɛn klia wan.
Wetin na PNH rili?
Fɔ tɔk am simpul wan, PNH na we wi yon imyun sistɛm mistek atak ɛn pwɛl wi yon wɛlbɔdi rɛd blɔd sɛl dɛn. Imajin, wetin de apin ya tan lɛk ami we dɛn se de protɛkt wan kɔntri, we de atak di pipul dɛn na da kɔntri de.
dis na biכs wan jεnεtik mכtεshכn de insay sכm pan di sεl dεm na wi bon mכro. Dis kin mek di rɛd blɔd sɛl dɛn we da bon mɛro de mek kin wik smɔl. I izi fɔ no dɛn wik sɛl ya ɛn wi imyun sistɛm kin pwɛl dɛn.
- Di pwɛl pwɛl we dɛn de pwɛl di rɛd blɔd sɛl dɛn: We wi de tɔk bɔt mɛrɛsin, dɛn kɔl dis we aw di rɛd blɔd sɛl dɛn de brok, ɛmolaysis .
- di kɔlɔ we di urine kin chenj: Ɛmoglobin na wan prɔtin we de insay di rɛd blɔd sɛl dɛn we kin kɛr ɔksijɛn. We di sɛl dɛn brok, dis ɛmoglobin de kɔmɔt na di blɔd, di kidni dɛn kin filta am, ɛn pul am na di urine. Dɛn kɔl dis ɛmoglobinuria . Dis na di rizin we mek di urine kin tan lɛk dak, brawn, ɔ blɔd kɔlɔ. Bɔku tɛm dis kin klia mɔ pan mɔnin urine.
Bɔt mɛmba se di sayn dɛm fɔ PNH nɔr de di sem fɔ ɔlman. Sɔm pipul dɛn nɔ kin notis ɛni chenj na di urine kɔlɔ atɔl.
Wan ɔda siriɔs prɔblɛm we dis sik kin gɛt na we i kin mek blɔd klɔt mɔ ɛn mɔ . Sɔm pan dɛn klot ya kin mek pɔsin in layf de pan denja. Dɔn bak, dis sik nɔ kin afɛkt di rɛd blɔd sɛl dɛn nɔmɔ, bɔt i kin afɛkt di wayt blɔd sɛl dɛn we de fɛt infɛkshɔn ɛn di pletlɛt dɛn we de stɔp fɔ blɔd.
Wetin na di tritmɛnt fɔ PNH sik?
Di tritmɛnt fɔ PNH de dipen pan yu simptom dɛm ɛn aw yu sik siriɔs. Yu dɔktɔ go tɔk to yu us tritmɛnt go fayn fɔ yu. Di tebul we de dɔŋ ya de sho sɔm pan di men tritmɛnt dɛn we de naw.
| Di we aw dɛn kin trit am | Fɔ tɔk am simpul wan, wetin kin apin? |
|---|---|
| Andrɔjen tɛrapi | Dis na wan kayn man ɔmon. Dɛn kin mek di bon mɛro wok ɛn mek di rɛd blɔd sɛl dɛn bɔku. Dɛn kin ɛp fɔ ridyus di anemia. |
| Antikɔagulɛnt dɛn | Dɛn kin mek blɔd nɔ klɔt na di blɔd vesel dɛn. Dɛn tin ya kin de as injɛkshɔn ɔ pils. |
| Blɔd we dɛn kin gi pɔsin | We di rɛd blɔd sɛl ɔ pletlɛt lɛvɛl kin rili smɔl, dɛn kin kɔmpɛns di blɔd we nɔ de bay we dɛn kin gi am blɔd na do. |
| Fɔ transplant bon mɛrɔ | Dis na di onli we fɔ mɛn PNH kɔmplit wan . Bɔt i rili risky. So, na fɔ di wan dɛn nɔmɔ we rili bad. |
| Kɔmplimɛnt Inhibitɔ dɛn | Dɛn kin tɔch di pat pan di imyun sistɛm we de pwɛl di rɛd blɔd sɛl dɛn ɛn stɔp da prɔses de. Soliris ɛn Ultomiris na dɛn kayn drɔgs ya. |
| Di tin dɛn we kin mek pɔsin gro | I de ɛp fɔ mek di rɛd ɔ wayt blɔd sɛl dɛn bɔku bay we i de mek di bon mɛro wok. |
| Ɔda mɛrɛsin dɛn | Di dɔktɔ kin gi yu bak fɔlik asid, ayɛn sɔpɔtmɛnt, stɛroyd, ɛn tin dɛn we de mek yu bɔdi nɔ ebul fɔ fɛt di sik we yu nid. |
So wetin na dis Empaveli?
Empaveli na nyu ɛn ayli ifɛktiv kɔmplimɛnt inhibito drɔg we dɛn kin yuz fɔ trit PNH.
Tink bɔt wi imyun sistɛm lɛk wan chen we gɛt prɔtin dɛn we gɛt wanwɔd. wan pat pan dis chen dεn kכl am di `Kכmpliment sistεm`. insay PNH, dis sistεm de bi ova aktif εn i de pwεl di rεd bכdi sεl dεm.
Ol drog dεm (e.g. eculizumab) bin de tכk to wan sayt we dεn kכl C5 insay dis chen. Dɛn bin jɔs stɔp di pwɛl pwɛl we de insay di blɔd vesel dɛn (intravascular hemolysis).
Bɔt dis nyu mɛrɛsin we dɛn kɔl Empaveli, de tɔch wan say we dɛn bin de yuz trade, we dɛn kɔl C3. di advantej fכ dis na dat i de kכntro di damej we de insay di bכdi we de insay di bכdi, εn di damej we de insay di כgan dεm lεk di liva εn di splin (extravascular hemolysis).
So, Empaveli kin bɛnifit mɔ fɔ di wan dɛn we dɔn kɔntinyu fɔ gɛt anemia ɛn we nɔ dɔn wɛl ɔl frɔm di mɛrɛsin dɛn we dɛn bin dɔn tek trade.
Aw fɔ yuz Empaveli?
Empaveli na wan mɛrɛsin we yu kin yuz na os.
- Di we aw dɛn de du am: Dis na injɛkshɔn we dɛn kin put ɔnda di bɔdi .
- Frɛkuɛns: Dɛn kin gi am tu tɛm insay di wik .
- Doz: Yu dɔktɔ kin ajɔst yu doz bay we i de chɛk di lɛvɛl fɔ wan ɛnzaym we dɛn kɔl `Lactate Dehydrogenase (LDH)` na yu blɔd. di LDH lεvεl dεm de mכsu aw bכku rεd bכdi sεl dεm de brok dכn.
- Aw fɔ yuz am: Tu we dɛn de fɔ yuz dis. Wan na fɔ yuz smɔl pɔmp we de kɛr di mɛrɛsin go insay di bɔdi fɔ 30-60 minit. Di ɔda wan na wan tɛm injɛkta sistɛm we dɛn kin put na di bɛlɛ.
Nɔ wɔri, yu dɔktɔ ɔ nɔs we tren go tich yu fɔs aw fɔ yuz dis.
Tin dɛm fɔ no bɔt aw dis mɛrɛsin de woke ɛn sef
Di sakses we Empaveli gɛt dɔn kɔnfyus insay tu big klinik stɔdi dɛn, PEGASUS ɛn PRINCE.
Fɔ tɔk am simpul wan, insay ɔl tu di stɔdi dɛn, di wan dɛn we tek Empaveli bin gɛt bɔku bɔku ɛmoglobin lɛvɛl pas di wan dɛn we tek ɔda tritmɛnt dɛn. Dɛn nɔ bin gɛt bɛtɛ blɔd bak.
Sayd ɛfɛkt ɛn sef
Di men sayd ɛfɛkt dɛm wae dɛn kin si wit Empaveli na:
- Pen, rɛd, ɔ swel na di say we dɛn injekt: Dis na nɔmal tin. Yu kin fil fri if yu put ays pak ɔ sok am insay wam wata.
- Di risk fɔ gɛt infɛkshɔn we de go ɔp: Bikɔs dis mɛrɛsin de stɔp pat pan di imyun sistɛm, risk de fɔ mek i gɛt sɔm baktri infɛkshɔn (espɛshali baktri dɛm we dɛn put insay kapsul).
Fɔ ridyus dis risk, yu dɔktɔ go gi yu ɔl di vaysin dɛn we yu nid bifo yu bigin fɔ tek Empaveli. Yu fɔ kip wan Patient Safety Card wit yu bak we yu de tek di mɛrɛsin ɛn fɔ 2 mɔnt afta yu dɔn stɔp fɔ tek am. Dis go ɛp pipul dɛm wae de trit yu fɔ no se yu de tek dis mɛrɛsin if ɛnitin apin.
Wetin na di Empaveli REMS program?
Dis na wɔd we kɔmplikt smɔl, bɔt fɔ tɔk am simpul wan, i min spɛshal program fɔ protɛkt pɔsin . Bikɔs ɔf di risk fɔ infɛkshɔn wit drɔgs lɛk Empaveli, na gɔvmɛnt ɛjɛnshi dɛm de impruv dɛn kayn program ya.
Ɔnda dis `REMS (Risk Evalueshɔn ɛn Mitigashɔn Strateji)` program:
1. Di dɔktɔ we de gi yu mɛrɛsin fɔ rɛjista na dis program.
2. Di famasi we de gi yu di mɛrɛsin fɔ gɛt sɛtifiket bak fɔ dis.
3. Dɔktɔ, yu nid fɔ no gud gud wan bɔt di prɔblɛm dɛn we di mɛrɛsin kin gɛt ɛn di sayn dɛn we pɔsin kin gɛt we i gɛt infekshɔn (fiva, bɔdi we kin at, ed we kin at bad bad wan).
Dis kin mek shɔ se yu no gud gud wan bɔt di bɛnifit ɛn prɔblɛm dɛn we dis mɛrɛsin gɛt ɛn yu de yuz am sef wan.
Mɛsej we dɛn kin kɛr go na os
- PNH na sik we nɔ kin bɔku bɔt we yu kin ebul fɔ kɔntrol we yu yon imyun sistɛm kin pwɛl di rɛd blɔd sɛl dɛn.
- Empaveli na wan nyu tritmɛnt we rili wok, nyu tritmɛnt fɔ PNH we de stɔp di pwɛl pwɛl we di blɔd sɛl dɛn de pwɛl.
- Dis mɛrɛsin kin mek yu gɛt infekshɔn, so mek shɔ se yu gɛt di shot dɛn we yu dɔktɔ gi yu. Yu fɔ no ɛni sayn we de sho se yu gɛt di sik.
- Empaveli dεn de gi am כnda wan spεshal mεkanism fכ akshכn (REMS). Ɔltɛm kip di Patient Safety Card we yu gɛt wit yu.
- If yu gɛt ɛni kwɛstyɔn bɔt yu sik ɔ tritmɛnt, duya tɔk to yu dɔktɔ ɛn nɔ shem.
💬 Comments (0)
No kɔmɛnt nɔ de yet. Ad yu kɔmɛnt ya fɔ di fɔs tɛm.
Ad yu kɔmɛnt