Yu gɛt sɔm sayn dɛn lɛk fɔ taya ɔltɛm, fɔ blo shɔt we yu de waka smɔl, ɔ fɔ gɛt dak brawn urine na mɔnin? Sɔntɛnde, dɛn tin ya kin bi sayn fɔ wan blɔd sik we nɔ kin apin so ɔltɛm we dɛn kɔl Paroxysmal Nocturnal Hemoglobinuria, ɔ PNH lɛk aw wi dɔktɔ dɛn kin kɔl am. Nɔ fred we yu yɛri dis nem. Pan ɔl we i kɔmplikt smɔl, lɛ wi tɔk bɔt dis sik ɛn wan nyu tritmɛnt fɔ am we dɛn kɔl Fabhalta insay simpul ɛn ditayli wɔd dɛn.
Wetin na PNH rili?
Fɔ tɔk am simpul wan, PNH na wan sik we nɔ kin apin na di blɔd we nɔ kin apin so ɔltɛm we pɔsin gɛt prɔblɛm wit in jɛnɛtiks. Wi rεd bכdi sεl dεm (RBC) gεt wan protin we de protεkt rawnd dεm. כltu, insay PNH, dis protεktiv kכt nכ de fכm.
Tink bɔt wi rɛd blɔd sɛl dɛn lɛk sojaman dɛn we nɔ gɛt ɛnitin fɔ fɛt. If wi nɔ gɛt dis protɛkshɔn, wi bɔdi in yon imyun sistɛm kin kɔnfyus ɛn bigin fɔ atak ɛn pwɛl dɛn wɛlbɔdi rɛd blɔd sɛl ya, ɛn tink se dɛn na ɛnimi. Dis we aw di rɛd blɔd sɛl dɛn kin brok bifo tɛm na wetin wi kin kɔl ɛmolaysis we dɛn kin kɔl ɛmolaysis . dis dεstrukshכn kin apin כl tu insay di bכdi vεsul dεm (intravaskul) εn ausayd di bכdi vεsul dεm (εkstravaskul).
We dɛn pwɛl di rɛd blɔd sɛl dɛn dis kayn we, di men tin we kin sho se pɔsin nɔ gɛt bɛtɛ blɔd ɛn blɔd kin klɔt. Sɔntɛnde, dɛn blɔd ya kin mek pɔsin in layf de pan denja. Pɔsin wae gɛt PNH kin gɛt bɔrku pan dɛn kayn sik ya, ɔr dɛn kin gɛt jɔs sɔm pan dɛn.
| Kɔmɔn simptom dɛm fɔ PNH sik | |
|---|---|
| I kin taya ɔ wi kin wik ɔltɛm | I nɔ kin izi fɔ yu fɔ blo |
| Ed de at | At nɔ kin bit ɔltɛm ɔ i kin bit kwik kwik wan |
| Bɛlɛ de pen | Skin we kin brus izi wan |
| urine we gɛt dak kɔlɔ (brawn), mɔ na nɛt ɔ na mɔnin | Rɛd, pen, ɛn swel na wan patikyula say na di skin (i kin bi sayn fɔ se blɔd dɔn klɔt) . |
Di tritmɛnt fɔ PNH inklud blɔd transfyushɔn, fɔlik asid ɔ ayɛn tablɛt fɔ anemia, antikoagulant, ɛn drɔgs we de protɛkt rɛd blɔd sɛl frɔm atak frɔm di imyun sistɛm. De tritmɛnt wae yu go gɛt go dipen pan ɔmɔs sik yu gɛt ɛn aw dɛn kin tranga.
Aw di mɛrɛsin we dɛn kɔl Fabhalta de wok?
Drug dεm lεk eculizumab (Soliris) כ ravulizumab (Ultomiris) we dεn kin gi as injεkshכn fכ PNH de wok bay we dεn de blכk wan pat pan wi imyun sistεm we dεn kכl di kompliment sistεm, we dεn kכl C5. pan ɔl we dɛn tin ya kin stɔp intravaskul ɛmolaysis, sɔm pipul dɛn kin kɔntinyu fɔ gɛt anemia bikɔs ɔf ɛkstra vaskyuɛl ɛmolaysis.
Dis na di say we di fɔs mɛrɛsin we dɛn kin tek bay mɔt we dɛn kɔl Fabhalta kin bi impɔtant.
Tink bɔt wi imyun sistɛm lɛk ami we de fɛt fɔ wi kɔntri. Insay PNH, sɔm pat dɛn pan dis ami kin kɔnfyus ɛn atak wi yon wɛlbɔdi rɛd blɔd sɛl dɛn. Fabhalta de blok wan protin we dεn kכ l fכktכ B we de mek dis kכnfyushכn. Dis kin mek di imyun sistɛm nɔ atak di rɛd blɔd sɛl dɛn. Dis kin mek di rɛd blɔd sɛl dɛn we gɛt wɛlbɔdi bɔku, i kin mek di sik nɔ bɔku, ɛn i nɔ kin nid fɔ tek blɔd.
Aw a fɔ yuz dis mɛrɛsin?
Fabhalta na kapsul we dɛn kin swɛla ful wan tu tɛm insay di de, wit it ɔ atɔl. Nɔ brok, krɔs, ɔ chew di kapsul. If yu mis wan doz, tek am as yu mɛmba ɛn tek di ɔda doz dɛm lɛk aw yu kin tek am. If yu dɔn ɔlrɛdi de tek ɔda PNH mɛrɛsin (lɛk eculizumab ɔ ravulizumab), yu dɔktɔ go ɛksplen di kɔrɛkt we fɔ chenj to Fabhalta.
I rili impɔtant: I impɔtant fɔ mek yu gɛt ɔl di vaysin dɛn we yu nid fɔ gɛt at le tu wiks bifo yu bigin dis tritmɛnt. Dis inklud di nyumokɔk vaysin ɛn di mɛningaytis vaysin. If yu nɔ ebul fɔ gɛt yu vaysin ɛn yu nɔ ebul fɔ stat Fabhalta, yu dɔktɔ go gi yu di vaysin dɛn ɛn bigin yu fɔ tek wan kɔs fɔ antibayɔtik di sem tɛm.
Ivin if yu sik dɛn dɔn bɛtɛ, nɔ stɔp fɔ tek Fabhalta if yu nɔ gɛt dɔktɔ advays . If yu du dat, yu rɛd blɔd sɛl dɛn kin bigin fɔ brok kwik kwik wan bak.
Aw dɛn dɔn stɔdi bɔt di tin dɛn we dis mɛrɛsin kin du?
Tu men stεdi dεm bin kכnfכm di efεktiv εn sef fכ Fabhalta. Dɛn tu bin inklud pasɛnt dɛn we gɛt PNH ɛn di anemia we kɔmɔt frɔm am.
1. APPLY-PNH stכdi: Dis involv pipul dεm we bin gεt anemia pan כl we dεn bin de tek כda PNH mεdikeshכn dεm (eculizumab כ ravulizumab) fכ at le 6 mכnt. Dɛn sheb dɛn to tu grup, dɛn gi wan grup Fabhalta, ɛn di ɔda grup kɔntinyu fɔ tek di ol mɛrɛsin.
2. APPOINT-PNH stɔdi: Dis involv pasɛnt dɛn we nɔ bin dɔn gɛt ɛni ɔda kɔmplimɛnt mɛrɛsin fɔ PNH bifo. Dɛn bin gi dɛn ɔl Fabhalta.
Di rizulyt fɔ dɛn stɔdi ya, afta 24 wik, kin rili ɛnkɔrej wi.
| Benefit we dɛn gɛt | Rizɔlt |
|---|---|
| Di ɛmoglobin lɛvɛl we de go ɔp | Mɔ pas 82% pan di pasɛnt dɛn we tek Fabhalta bin gɛt ɛmoglobin inkris we na 2 g/dL, we yu kɔmpia am wit ɛni wan pan di wan dɛn we tek di ɔda drɔgs. |
| Fɔ avɔyd fɔ tek blɔd | 95% pan di pasɛnt dɛn we tek Fabhalta nɔ bin nid fɔ transfyushɔn na do insay di tɛm we dɛn bin de du di stɔdi, we yu kɔmpia am wit 50% nɔmɔ pan di wan dɛn we tek di ɔda drɔgs. |
Mɛmba se pan ɔl we dɛn stɔdi ya dɔn du tin, yu kin difrɛn frɔm wan pɔsin to ɔda pɔsin. I bɛtɛ fɔ mek yu tɔk to yu dɔktɔ bɔt di bɛnifit ɛn prɔblɛm dɛn we de wit di mɛrɛsin bifo yu disayd fɔ du sɔntin.
Aw yu go no if di mɛrɛsin de wok?
If Fabhalta tritmɛnt wok fayn, yu rɛd blɔd sɛl ɛn ɛmoglobin lɛvɛl go bigin fɔ go ɔp. Yu kin gɛt tin dɛn lɛk:
- I kin gɛt mɔ ɛnaji ɛn i nɔ kin taya igen
- Di dak kɔlɔ we di urine gɛt dɔn go dɔŋ
- Di apɛtit we de go ɔp ɛn di pen we de na di bɛlɛ nɔ de igen
- Fɔ ridyus di nid fɔ transfyushɔn na do
- Fɔ ebul fɔ du wok dɛn we yu kin du ɛvride izi wan
Bikɔs di tin dɛn we kin kɔmɔt frɔm di tritmɛnt kin difrɛn frɔm wan pɔsin, rayt bɔt di sik dɛn we yu gɛt ɛn tɔk bɔt am wit yu dɔktɔ ɛvri tɛm we yu si am.
Sayd ɛfɛkt ɛn aw fɔ mɛn dɛn?
Lɛk ɛni mɛrɛsin, Fabhalta kin mek yu gɛt sayd ɛfɛkt. Di wan dɛn we kin apin mɔ na ed we kin at, dayarɛa, nɔs, bɛlɛ pen, ɛn skin rɔsh. Di sayn dɛm fɔ di kɔmɔn kol ɛn ɔda baktri ɔ vayral infɛkshɔn kin apin bak.
Siriɔs infɛkshɔn dɛn we nid fɔ pe atɛnshɔn!
Bikɔs dis mɛrɛsin de stɔp pat pan di imyun sistɛm, risk de fɔ mek pɔsin gɛt siriɔs infɛkshɔn frɔm sɔm kayn baktri dɛm. εspεshali *Streptococcus pneumoniae*, *Neisseria meningitidis*, εn *Haemophilus influenzae tayp B*. Dɛn infɛkshɔn ya kin mek pɔsin in layf de pan denja if dɛn nɔ no ɛn trit dɛn kwik kwik wan.
Di bɛst we fɔ mek yu nɔ gɛt di sik na fɔ gɛt ɔl di vaysin dɛn we dɛn kin gi yu , was yu an fayn fayn wan, ɛn nɔ de nia pipul dɛn we sik. If yu gɛt ɛni wan pan dɛn sik ya, tɛl yu dɔktɔ wantɛm wantɛm ɔ go na di ɔspitul imejensi rum (ETU) we de nia yu.
| Wonin sayn dɛm fɔ se yu gɛt siriɔs infɛkshɔn | |
|---|---|
| Fiva wit ɔ atɔl phlegm, chɛst pen ɛn kɔf, at bit kwik kwik wan | Di sayn dɛm lɛk di bɔdi we de at ɛn fiva |
| Skin we gɛt klem | Bɔrku ed pen wit fiva, nɔs, ɛn vɔmit, ɔr nɛk/bak stif |
| Kɔnfyus | Vishɔn kin chenj |
If yu de wɔri bɔt ɛni bad tin we go apin to yu, tɔk to yu dɔktɔ wantɛm wantɛm. If yu tink se yu gɛt pɔyzin frɔm mɛrɛsin, yu kin kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Kɔlɔmbɔ Nashɔnal Ospital .
Us blɔd tɛst dɛn fɔ du we dɛn de trit am?
Yu dɔktɔ go du bɔku blɔd tɛst fɔ wach yu wɛlbɔdi ɛn aw yu de du di mɛrɛsin.
- Rɛd blɔd sɛl (RBC) ɛn ɛmoglobin lɛvɛl:Dɛn kin chɛk dɛn tin ya ɔltɛm na PNH. Dis kin ɛp fɔ si aw yu de du di tritmɛnt ɛn fɔ no if yu nid fɔ tek blɔd.
- Blɔd fat lɛvɛl: Fabhalta kin mek yu kɔlɔstrel ɛn triglisɛrɛyd lɛvɛl go ɔp. So, yu dɔktɔ go tɛl yu fɔ du fasting lipid profayl tɛst bifo ɛn we yu de du tritmɛnt.
Prɔblɛm kin de wit ɔda mɛrɛsin dɛn?
Yes, sɔm mɛrɛsin dɛn kin intarakt wit Fabhalta. Sɔm mɛrɛsin dɛn lɛk Rifampin kin mek Fabhalta nɔ wok fayn. I nɔ fayn fɔ tek Fabhalta wit sɔm mɛrɛsin dɛn, lɛk Gemfibrozil.
So, i rili impɔtant fɔ mek yu tɛl yu dɔktɔ bɔt ɔl di mɛrɛsin dɛn we yu de tek – lɛk di mɛrɛsin dɛn we dɛn kin gi yu, di mɛrɛsin dɛn we yu kin bay na kɔt, vaytamɛn dɛn, tradishɔnal mɛrɛsin dɛn, ɛn ivin sɔpɔtmɛnt dɛn.
Mɛsej we dɛn kin kɛr go na os
- PNH na wan sik we nɔ kin apin so ɔltɛm we di bɔdi in yon imyun sistɛm kin pwɛl di rɛd blɔd sɛl dɛn bikɔs dɛn nɔ gɛt di prɔtin layt we de protɛkt dɛn.
- Fabhalta na nyu ɔral drɔg fɔ PNH we de wok bay we i de stɔp wan malfunction na di imyun sistɛm ɛn protɛkt rɛd blɔd sɛl dɛn.
- Bifo yu bigin dis mɛrɛsin, i fɔ dɔn gɛt vaysin fɔ sik dɛn lɛk mɛningaytis ɛn nyumonia.
- If yu gɛt sayn dɛn fɔ se yu gɛt siriɔs infekshɔn we yu de trit yu, lɛk fiva, ed we de at bad bad wan, ɔ kɔnfyushɔn, go to dɔktɔ wantɛm wantɛm.
- Ivin if yu sik dɛn dɔn bɛtɛ, nɔ ɛva stɔp fɔ tek di mɛrɛsin if yu dɔktɔ nɔ advays yu.
💬 Comments (0)
No kɔmɛnt nɔ de yet. Ad yu kɔmɛnt ya fɔ di fɔs tɛm.
Ad yu kɔmɛnt