Sik dɛn de we rili kɔmɔn pan wi, ɛn bak sik dɛn we nɔ kin bɔku, dat na, we nɔ kin bɔku. Sɔntɛm yu nɔ ivin yɛri bɔt dis kayn sik. Tide wi go tɔk bɔt dis kayn sik we nɔ kin apin so ɔltɛm, bɔt we impɔtant we gɛt fɔ du wit blɔd, we impɔtant fɔ mɛn am fayn fayn wan. I nem na Paroxysmal Nocturnal Hemoglobinuria, we wi kɔl PNH fɔ shɔt.
Fɔ tɔk am simpul wan, wetin na PNH?
PNH nɔto jɛnɛtik dizayd, bɔt na sik we dɛn kin gɛt ɔ pas frɔm mama ɛn papa to pikin dɛn. I kin divɛlɔp pan ɛni ej. Fɔ tɔk am simpul wan, pɔsin we gɛt dis sik gɛt sik we
di imyun sistɛm , we de protɛkt wi frɔm sik, kin mistek atak ɛn pwɛl in yon rɛd blɔd sɛl. Tink bɔt am lɛk shild we dɛn mek wit spɛshal prɔtin we de protɛkt wi frɔm sik. sכm rεd bכdi sεl dεm na di bכdi fכ di wan dεm we gεt PNH nכ gεt dis protεktiv shild, dat na dεn spεshal protin dεm. So di imyun sistεm de no dεn sεl dεm ya we nכ gεt shild, tink se dεn na bad bad tin we de kam insay di bכdi εn dεn de pwεl dεm. Pan ɔl we dis sik kin mek yu layf de pan denja,
if yu gɛt di rayt tritmɛnt, yu kin kɔntrol de sik, nɔr kin gɛt prɔblɛm wit yu layf ɛn liv gud layf. Dis sik nɔ kin afɛkt ɔlman di sem we. Sɔm pipul dɛn kin jɔs gɛt smɔl smɔl diskɔmfɔt. Ɔda pipul dɛn kin afɛkt am mɔ.
Di men tin we kin mek pɔsin gɛt prɔblɛm na we blɔd kin klɔt. Na lɛk 30% pan di wan dɛn we gɛt PNH de pan risk fɔ gɛt blɔd klɔt at le wan tɛm insay dɛn layf.
Wetin na di rizin fɔ dis?
Di tin we kin mek pɔsin gɛt dis sik na we wan jin chenj. Bɔt dis
nɔto sɔntin we pɔsin kin gɛt frɔm dɛn gret gret granpa dɛn. Dat min se i nɔto sɔntin we yu kin gɛt frɔm yu mama ɛn papa, ɛn nɔto sɔntin we yu kin pas to yu pikin dɛn. Dis na random jenɛtik chenj we kin apin we pɔsin de liv. biכs fכ dis jin mכtεshכn, yu bon mכro de stat fכ prodyuz abnכmal rεd bכdi sεl dεm we nכ gεt dεn protin dεm we de protεkt. So bikɔs di imyun sistɛm nɔ de protɛkt dɛn sɛl dɛn ya, dɛn kin brok izi wan. Insay mɛrɛsin, wi kin kɔl dis we aw rɛd blɔd sɛl dɛn kin brok
, ɛmolaysis . Sɔm dɔktɔ dɛn biliv se PNH gɛt fɔ du wit wikɛd tin we de na di bon mɛrɔ. Na mɔtalman wae gɛt wan sik wae dɛn kɔl aplastic anemia kin gɛt PNH. Dɔn bak, pipul dɛn we gɛt PNH kin leta gɛt aplastic anemia. pan dis kכndyushכn we dεn kכl aplastic anemia, di bon mכro de stכp fכ mek nyu bכdi sεl dεm.
Wetin na di sayn dɛm fɔ PNH?
Dɛn gi dis sik in nem to wan pan di men sayn dɛm we i kin gɛt. Paroxysmal min "we de apin wantɛm wantɛm", Nocturnal min "insay di nɛt", ɛn Hemoglobinuria min "we de kɔmɔt na di urine". Ɛmoglobin na di prɔtin we de gi blɔd in rɛd kɔlɔ. So, we di rɛd blɔd sɛl dɛn brok, dis ɛmoglobin kin kɔmɔt na di urine,
ɛn di urine we dɛn kin pul na nɛt ɔ na mɔnin kin dak (lɛk kola) ɔ rɛd . Na lɛk 50% pan di pipul dɛm wae gɛt PNH kin gɛt dis sik. Di sayn dɛm kin kam mɔr fɔ tri rizin dɛm:
Di mɔ blɔd sɛl dɛn we nɔ fayn na yu bɔdi, na di mɔ yu go gɛt sɔm sayn dɛn.
Kɔmɔn simptom dɛm wae kin kam wae rεd blɔd sɛl kin brok ɛn blɔd blɔd nɔr kin gɛt bɛtɛ blɔd
| Fɔ fil se yu taya bad bad wan ɛn yu wik | Fɔ fil taya ivin afta yu dɔn du smɔl wok. |
| Ed de at | Yu ed kin at ɔltɛm. |
| I nɔ kin izi fɔ yu fɔ blo | Wiz ivin we yu de waka fɔ shɔt tɛm. |
| Di at we de blo | Fɔ fil lɛk se yu at de bit fast fast. |
| Bɛlɛ de at | Abdominal pen fɔ natin. |
| I nɔ izi fɔ swɛla | I nɔ kin izi fɔ swɛla it ɔ wata. |
| Pale ɔ yɔlɔ skin | Di skin kin yɔlɔ ɛn di yay kin wayt. |
| Brus izi wan | Ivin smɔl injuri kin mek yu gɛt big big brus. |
| Di disfɔkshɔn pan mami ɛn dadi biznɛs na man dɛn | I nɔ kin izi fɔ gɛt ɔ kip di arousal we dɛn de du mami ɛn dadi biznɛs. |
I rili impɔtant: Blɔd we de rɔtin na tin we de mek pɔsin denja ɛn i nid fɔ go to dɔktɔ kwik kwik wan. Yu fɔ no bɔt dɛn sik ya we de kam biɛn ya.
| Di say we di blɔd de klɔt | Ficha dɛn we yu fɔ luk fɔ |
|---|
| Kanda | Wan say we rɛd, we de mek pɔsin fil pen, ɔ we swel na di skin. |
| Arm ɔ Leg | Am/leg pen, fil wam, ɛn swel. |
| Bɛlɛ | I kin at bad bad wan na yu bɛlɛ, yu kin gɛt ɔlsa, ɛn yu kin gɛt blɔd. |
| Bren | Siriv ed pen wit ɔ atɔl vɔmit, siz, at fɔ muv, tɔk, ɔ si. |
| Lɔng | I nɔ izi fɔ blo, shap pen na yu chɛst lɛk nɛf, yu de kɔf blɔd, yu de swet. |
If yu gɛt smɔl saspek se yu gɛt blɔd klɔt lɛk dis, .
Tɛl yu dɔktɔ wantɛm wantɛm. Go na di ɔspitul Imejɛnsi Dipatmɛnt (ETU) we de nia yu ɛn nɔ de te, mɔ if yu gɛt prɔblɛm fɔ blo, i nɔ izi fɔ tɔk/si, yu ed de at bad bad wan wantɛm wantɛm, yu chɛst de pen, ɔ yu de sidɔm. Aw fɔ no di sik kɔrɛkt wan?
We yu go to yu dɔktɔ, i go aks yu bɔt di sik dɛn we yu gɛt ɛn di mɛrɛsin histri. Dɔn i go chɛk yu ɛn tɛl yu fɔ du sɔm blɔd tɛst. Di men tɛst we dɛn kin du fɔ dis na spɛshal blɔd tɛst we dɛn kɔl flɔ saytometri . Dis na wetin de mek shɔ se yu rɛd blɔd sɛl dɛn gɛt dɛn prɔtin dɛn ya we de protɛkt yu. Apat frɔm dat, dɛn kin chɛk yu blɔd sɛl kɔnt (ful blɔd kɔnt) ɛn di ayron lɛvɛl bak. Sɔntɛnde, dɛn kin nid fɔ tek bon mɛrɔ sɛmpul bak. Wetin na di tritmɛnt dɛm fɔ PNH?
Tu men gol de fɔ trit PNH. Wan na fɔ mek di sik nɔ kam, ɛn di ɔda wan na fɔ mek dɛn nɔ gɛt prɔblɛm dɛn we denja (espɛshali we blɔd nɔ de klɔt). De tritmɛnt wae yu go gɛt go dipen pan aw yu sik bad.- Ɔda tin dɛn we de mek pɔsin gɛt bɔdi: Dɛn kin gi fɔlik asid ɛn ayɔn sɔpɔtmɛnt fɔ kɔntrol anemia.
- Spɛshal mɛrɛsin dɛn: Mɛrɛsin dɛn de lɛk Eculizumab (Soliris) ɛn Ravulizumab (Ultomiris) we de mek di rɛd blɔd sɛl dɛn nɔ brok. Dɛn kin gi dɛn tin ya insay di bɛlɛ. Dɛn gɛt di bɛnifit fɔ kɔntrol di blɔd we nɔ gɛt bɛtɛ blɔd, i nɔ nid fɔ tek blɔd na do, ɛn i nɔ de mek di blɔd klɔt. Pegcetacoplan (Empaveli) na ɔda nyu mɛrɛsin we dɛn kin yuz fɔ dis.
- Blɔd Transfyushɔn: If anemia bad bad wan, dɛn kin gɛt blɔd fɔ sɔm tɛm we dɛn gi blɔd frɔm pɔsin we gɛt wɛlbɔdi.
- Blɔd tin dɛn: Dɛn kin gi blɔd tin fɔ pipul dɛn we gɛt bɔku risk fɔ mek blɔd klɔt.
- Bone Marrow Stem Cell Transplant : Dis na di onli we fɔ mɛn PNH kɔmplit wan . dis involv fכ pul di bon mכro we sik εn transplant stεm sεl dεm frכm hεlth pכsin (bכku tεm na bכda bכda). Bɔt bikɔs dis na rili risky ɛn kɔmplikɛt prosidur, dɛn kin rɛkɛmand am fɔ yɔŋ pipul dɛn nɔmɔ we gɛt rili siriɔs sik.
Yu dɔktɔ go disayd us tritmɛnt we go fayn fɔ yu. I rili impɔtant bak fɔ tek kia ɔf yusɛf.
We yu de liv wit PNH, i impɔtant pas ɛni ɔda tɛm fɔ tek kia ɔf yusɛf.- Gud it: It tin dɛn we gɛt fayn fayn tin dɛn fɔ it. If yu it tin dɛn we gɛt bɔku ayɔn (spinach, mit) wit sɔntin we gɛt bɔku vaytamɛn C (ɔrɛnj, tanjɛrin) i kin ɛp di bɔdi fɔ tek ayɔn bɛtɛ.
- Ɛksesaiz: We yu taya, dat kin mek i nɔ izi fɔ du ɛksasaiz. Aks yu dɔktɔ us ɛgzampul dɛn we fayn fɔ yu.
- Protɛkt yusɛf frɔm infɛkshɔn : Was yu an ɔltɛm. Nɔ go na say dɛn we pipul dɛn kin bɔku ɛn usay sik pipul dɛn de. If yu gɛt fiva, tɛl yu dɔktɔ wantɛm wantɛm.
- Mental hεlth: Na nɔrmal tin fɔ fil bad, vɛks, ɛn wɔri wae yu kam fɔ no se yu gɛt dis sik wae nɔr kin bɔrku. We yu tɔk bɔt dɛn filin ya to pɔsin we yu abop pan ɔ pɔsin we de advays yu, dat kin mek yu fil fayn.
- Bɛlɛ: If yu na uman we de plan fɔ gɛt bɛlɛ, mek shɔ se yu go to yu dɔktɔ bifo yu gɛt bɛlɛ. PNH kin mek yu ɛn yu pikin gɛt prɔblɛm we yu gɛt bɛlɛ.
Mɛsej we dɛn kin kɛr go na os
- PNH na wan sik we nɔ kin apin na di blɔd we nɔ kin apin bikɔs ɔf wan jenɛtik muteshɔn, bɔt nɔto inhɛrit.
- Di men ɛn denja kɔmplikeshɔn fɔ dis sik na we blɔd de klɔt. Ɔltɛm yu fɔ no bɔt in wɔnin sayn dɛm (bɔku ed pen, chɛst pen, at fɔ blo).
- Pan ɔl we dis kin mek pɔsin in layf de pan denja, tritmɛnt dɛn de we rili fayn tide fɔ kɔntrol di sik dɛn ɛn fɔ mek in layf bɛtɛ.
- Pan ɔl we bon mɛrɔ transplant na di wan ol tritmɛnt we go ful-ɔp fɔ mɛn PNH, i gɛt ay risk ɛn i fayn fɔ di wan dɛn nɔmɔ we dɛn dɔn pik.
- I rili impɔtant fɔ de tɔk to yu dɔktɔ ɔltɛm ɛn fala wetin i tɛl yu fɔ du.
💬 Comments (0)
No kɔmɛnt nɔ de yet. Ad yu kɔmɛnt ya fɔ di fɔs tɛm.
Ad yu kɔmɛnt