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Yu don eva yehri boht "Porphyria"? Lɛ wi tɔk bɔt dis sik we nɔ bɔku!

Yu don eva yehri boht "Porphyria"? Lɛ wi tɔk bɔt dis sik we nɔ bɔku!

wan rili komplex εn amazing prכsεs we de apin insay yu bכdi na di prodyushכn fכ sכmtin we dεn kכl "Heme". Dis Heme impɔtant fɔ mek di Ɛmoglobin we de mek wi blɔd gɛt rɛd kɔlɔ ɛn i de kɛr ɔksijɛn ɔlsay na di bɔdi. nכto dat nכmכ, bכt dis Hεm de εp fכ bכku כda imכtant wok dεm insay wi sεl dεm. Bɔt sɔntɛnde di we aw dɛn kin mek dis Ɛm kin go rɔng. Na da tɛm de kɔndishɔn dɛn we de pan wan grup we nɔ kin bɔku we dɛn kɔl "Porphyria" kin apin. Nɔ wɔri, lɛ wi tɔk bɔt dis simpul wan.

Wetin rili na Pɔfyuria?

Fɔ tɔk am simpul wan, pɔfyuria na wan kɔmɔn nem fɔ wan grup we nɔ kin bɔku we kin afɛkt di we aw wi de mek hεm na wi bɔdi. Tink bɔt am dis we, fɔ mek hεm tan lɛk wan kɔmpleks tin we gɛt et stɛp. εvri wan pan dεn stεp dεm ya nid et spεshal εnzym dεm fכ wok fayn fayn wan. di εnzym dεm na protin dεm we de mek di kεmikכl dεm we wi bכdi de du kwik kwik wan. kεmikכl dεm we dεn kכl "pכfyurin" εn "pכfyrin prεkursכr" dεn de involv bak insay dis prכsεs.

Naw tink bɔt am, wetin kin apin if wan ɛnzaym we de na wan pan dɛn et step ya nɔ wok fayn? Na de di prɔblɛm bigin. lεk chen riakshכn, we da εnzym de nכ de wok, di pכfyurin dεm εn di pכfyurin prεkursכr dεm we bin kam bifo i bigin fכ kכmכt insay di bכdi in sεl dεm. Na dis kεmεkal dεm we de kכlכp de mek di sayn dεm fכ pכfyuria.

Yu kin de wɔnda, "Wetin mek dis ɛnzaym nɔ de wok fayn?" Bɔku tɛm, di tin we kin mek pɔsin gɛt dis sik na we i de chenj in jɛnɛtiks. dat min se, chenj de insay wan jin we de kכd fכ wan εnzym we de involv insay di prכsεs fכ mek hεm. Dis sik we dɛn kɔl pɔfyuria, bɔku tɛm na frɔm in mama ɛn papa. Dat min se dis jεnεtik mכtεshכn kin pas to כda pipul dεm na di famili. If dat apin, dɛn kin gɛt pɔfyuria bak ɔ dɛn kin gɛt di sik.

Bɔt nɔ wɔri. If yu kam fɔ no se yu gɛt dis sik, dɔktɔ dɛn kin ɛp yu fɔ kɔntrol yu sik dɛn, ɛn sɔntɛm dɛn kin ivin protɛkt yu. Dis kin ɛp fɔ ridyus di impak wae dɛn kayn tin ya kin gɛt pan yu layf.

Sɔm kayn pɔfyuria de?

Yɛs, na lɛk et kayn pɔfyuria de. Dɔktɔ dɛn kin kɔl dɛn ɔl togɛda "di pɔfyuria." Dɔktɔ dɛn go disayd us kayn pɔfyuria yu gɛt bay di sayn dɛn we yu gɛt ɛn usay na yu bɔdi dɛn ɛkstra kemikal dɛn we a bin dɔn tɔk bɔt kin gɛda.

in jεnarכl, dεn kin sheb dεn kayn pכfyuria ya to tu men grup dεm bay dεn simptom dεm:

  • Akyu Pɔfyuria (sɔntɛnde dɛn kin kɔl am "Akyu Ɛpatik Pɔfyria") .
  • Pɔfyria we de na di skin

Akyu Pɔfyuria

Dis grup fɔ sik kin mek yu bɛlɛ pen bad bad wan ɛn ɔda sayn dɛm. Sɔm kayn akyu pɔfyuria kin mek yu skin fil lɛk di san ɛn mek yu skin gɛt blista.

Na sɔm kayn akyu pɔfyuria dɛn ya:

  • Akyu Intamitεnt Pכfyuria (AIP): Dis na di kayn akyu pכfyuria we kכmכn pas כl. I kin mek yu bɛlɛ fil pen wantɛm wantɛm, bɔt i nɔ kin fil lɛk di san ɔ yu skin kin gɛt blista.
  • Hereditary Coproporphyria (HCP): Apat frɔm we yu bɛlɛ kin kramp wantɛm wantɛm, yu skin kin fil lɛk di san ɛn blista.
  • Variegate Porphyria (VP): Insay dis kɔndishɔn, yu kin gɛt bɛlɛ kramp wantɛm wantɛm ɛn/ɔ yu skin kin gɛt blista. Dɛn tin ya kin wɔs we yu de na di san.
  • ALAD-dεfisiεns pכfyuria: ALAD tinap fכ di εnzym "delta-aminolevulinic acid (ALA) dehydratase". Dis na wan kayn pɔrfyuria wae nɔr kin bɔrku, wae kin sho sɔm kayn sik wae dɛn smɔl.

Pɔfyria we de na di skin

Dis grup fɔ sik kin mek yu gɛt sayn dɛn na yu skin we yu de na di san. Dɛn tin ya kin bi pen, skin kɔlɔ kin chenj, swel, ɛn/ɔ blista. Dipen pan di ɔndalayn kɔz, sɔm pipul dɛn kin gɛt wan blista fɔm na dɛn skin we dɛn kɔl Cutaneous Porphyrias, ɔda wan dɛn nɔ kin gɛt blista fɔm.

Tayp dɛm fɔ Blistering Cutaneous Porphyrias:

  • Porphyria Cutanea Tarda (PCT): Dis na di kayn pɔfyuria we dɛn kin gɛt mɔ.
  • Congenital Erythropoietic Porphyria (CEP): "Erythropoietic" de tכk bכt yu bon mכro. dis na di men say we di ekstra pכfyurin dεm de kכmכt na dis sik. Dis na wan kayn pɔfyuria bak we nɔ kin bɔku.

Tayp dɛm fɔ Nɔn-blistering Cutaneous Porphyrias:

  • Erythropoietic Protoporphyria (EPP) ɛn X-linked Porphyria (XLP): Dɛn kin kɔl dɛn tin ya bak "di protoporphyrias" bikɔs di kemikal we kin gɛda na dɛn sik ya na "protoporphyrin." "X-linked" min se jεnεtik mכtεshכn de na di X kromozom.
  • Hepatoɛritropoiɛtik pɔfyuria: .Dis na wan kayn pɔfyuria bak we nɔ kin bɔku.

Wetin na di sayn dɛm fɔ Pɔfyuria?

De sayn dɛm wae yu kin gɛt ɛn aw lɔng dɛn kin las go dipen pan di kayn pɔrfyuria wae yu gɛt. Di sayn dɛm kin rili smɔl ɔr kin rili bad. Sɔm pipul dɛm wae gɛt pɔrfyria nɔr kin gɛt ɛni sayn atɔl. Bɔt sɔm tɛm dɛn de, dɛn sik ya kin mek pɔsin in layf de pan denja if dɛn nɔ trit dɛn fayn.

Simptom dɛm fɔ Akyu Pɔfyuria

akyu pכfyuria de kכz fכ inkrεs pan di hεm prεkursכr dεm aminolevulinic acid (ALA) εn porphobilinogen (PBG). Dɛn tin ya kin afɛkt di we aw yu nervɔs sistɛm de wok. Tink bɔt am, ɔltin frɔm we yu de muv yu mɔsul dɛn to we yu de digest it, na di nervɔs sistɛm de kɔntrol am. Pכfyuria de mek di nεv sεstem nכ de wok fayn, we de mek di simptom dεm we de fכm "attak."

If yu gɛt akyu pɔfyuria, sɔm sayn dɛn lɛk:

  • Wan bad bad bɛlɛ pen
  • Nɔs ɛn vɔmit
  • Banbɛlɛ
  • Pen na di chɛst, bak, an, ɛn/ɔ leg
  • Wɔri
  • Nɔ ebul slip
  • Di chenj dɛm na yu maynd lɛk fɔ kɔnfyus, fɔ de agyu, ɛn fɔ si tin dɛn we yu de tink bɔt
  • Wok tranga wan
  • At bit kwik kwik wan (Tachycardia) .
  • Di ay blɔd prɛshɔn
  • Yu nɔ de fil fayn, yu de fil lɛk yu de swɛt (Paresthesia) .
  • di mכsul dεm we de wik כ yu paralayz (dis kin afekt di mכsul dεm we de εp yu fכ brith bak) .
  • Di sik dɛn we kin mek pɔsin sik
  • Dak ɔ rɛd urine (pɔfyrin ɛn ɔda kemikal dɛn kin chenj di kɔlɔ fɔ di urine) .

If yu gɛt hereditary coproporphyria ``(HCP)`` ɔ variegate porphyria ``(VP)``, yu skin kin sɛnsitiv to san layt. If yu de na di san, i kin mek yu gɛt blista, yu skin kin chenj in kɔlɔ, ɛn/ɔ yu kin gɛt skata.

Aw lɔŋ akyu pɔfyuria kin las?

Wan atak lɛk dis kin las frɔm tri to sɛvin dez. Bɔt, mɔ if dɛn nɔ trit am, i kin las fɔ lɔng tɛm. E kin tek sɔm wik to mɔnt fɔ mek di sik nɔr de igen. Yu kin jɔs gɛt wan ɔ sɔm atak dɛn na yu layf. Bɔt sɔm pipul dɛn kin gɛt bɔku atak dɛn insay wan ia.

Akyu pɔfyuria kin mek yu gɛt lɔng tɛm kɔmplikeshɔn lɛk ay blɔd prɛshɔn, kidni we nɔ de wok fayn, ɛn smɔl tɛm, liva kansa.

Di simptom dɛm fɔ Nɔn-blistering Cutaneous Porphyrias (EPP/XLP) .

Pɔfyuria we de na di skin kin mek yu gɛt sayn dɛn na yu skin we yu de na di san. Dis inklud di san layt we de kɔmɔt dairekt na do, ɛn di san layt we de kam insay tru winda dɛn. Sɔm kayn atifishal layt kin mek yu gɛt sayn dɛn bak. Dis kayn pɔfyuria nɔ de mek di bɛlɛ pen wantɛm wantɛm ɔ ɔda sayn dɛm we kin tan lɛk "atak."

We yu bigin fɔ fil we di san de shayn, yu kin fil lɛk se yu de swɛt fɔs. If yu nɔ kɔmɔt na di san kwik, yu kin gɛt wetin dɔktɔ dɛn kɔl "phototoxic reaction." Yu kin gɛt sɔm kayn sik dɛn na yu skin lɛk dis, mɔ na yu fes, yu an, ɛn yu fut:

  • I de it
  • Fɔ mek pɔsin nɔ ebul fɔ du natin
  • De swɛl
  • Big pen na di say we di sik afɛkt
  • Smɔl pepul, rɛd, ɔ brawn spat dɛn na di skin (`(Petechiae)`)

Dɛn riakshɔn ya kin rili pen ɛn dɛn kin las frɔm tu to fayv dez. Yu fɔ tray fɔ de insay os ɛn kol di say dɛn we di sik dɔn ambɔg (fɔ ɛgzampul, wit kol briz we kɔmɔt na ɛya kondishɔn).

Di simptom dɛm fɔ Blistering Cutaneous Porphyrias

Pɔfyuria Kutanɛa Tarda (PCT) .

Pipul wae gɛt PCT kin gɛt sɔm kayn sik lɛk:

  • Skin blista (bɔku tɛm na di bak pat pan di an) .
  • Ska dɛn we de na di wɔl
  • Di kɔlɔ we di skin kin chenj
  • Di skin we de tik
  • Fraylayz skin we kin te izi wan wit ivin di smɔl injuri ɔ prɛshɔn
  • di ia we de gro pasmak (bɔku tɛm na di fes, di sayd dɛn na di fɔɛd, ɔ na say dɛn lɛk di chin) .

Kɔnjɛnital Ɛritropoiɛtik Pɔfyria (CEP) .

Dis siriɔs kayn pɔfyuria kin bigin fɔ sho di sayn dɛm jɔs afta dɛn bɔn am ɔr rili ali na layf. Di fɔs sayn na rɛd urine. Bikɔs di pikin in dayapɛt gɛt rɛd rɛd stɛyn, bɔku tɛm dɛn kin tɛmpt dɔktɔ dɛn fɔ chɛk fɔs if i gɛt infekshɔn na in urinary tract.

Ɔda sayn ɛn simptom dɛm fɔ CEP na:

  • Sivɛri skin blistering ivin if yu de pan ivin smɔl san ɔ fluorescent layt
  • Blista dɛn kin gɛt di sik, we kin mek di bon dɛn gɛt infɛkshɔn ɛn di bon dɛn kin pwɛl
  • Sכm pat dεm na di fes we de lכs (iya εn nos kכtilaj) .
  • Tit dɛn de tɔn grey-brawn
  • Anemia - Dis min se di rεd bכdi sεl dεm nכ de na di bכdi. Sɔntɛnde, i kin nid fɔ transfyushɔn blɔd.
  • Di splin we de mek di bɔdi big
  • Lכw pletlεt kכnt (`(Lכw pletlet kכnt)`)

Wetin na di tin dɛn we kin mek pɔsin gɛt pɔfyuria?

Akyu pכfyuria kin kכz fכ chenj dεm na sכm jin dεm. Bɔt jɔs bikɔs yu gɛt chenj na yu jɛnɛtiks nɔ min se yu go gɛt di sayn dɛn we de sho se yu gɛt pɔrfyuria.Bɔrku pipul dɛm wae gɛt di jenɛtik chenj wae gɛt fɔ du wit pɔrfyria nɔr kin gɛt dis sik. Dis min se di jenɛtik tɛst nɔmɔ nɔ go ebul fɔ kɔnfɔm di diagnosis. di onli we fכ no fכ sכri if yu simptom dεm na akyu pכfyuria na fכ tεst yu urine fכ ALA εn PBG lεvεl.

Masta sabi bukman dɛn tink se ɔda tin dɛn lɛk ɔmon, sɔm mɛrɛsin dɛn, ɛn wetin yu de it ɛn drink, kin rili ɛp fɔ mek di sik bigin fɔ atak yu. If dɛn bɔn yu wit wan jenɛtik muteshɔn we gɛt fɔ du wit akyu pɔfyuria, dɛn ɔda tin ya kin mek di atak wɔs.

Tin dɛm wae kin mek dɛn kayn atak ya na:

  • di inkrεs lεvεl dεm fכ uman sεks כmon dεm (fכ egzampl, di tεm we di luteal fεz na yu mכnt mεnstral saykl) .
  • Sɔm mɛrɛsin dɛn (fɔ ɛgzampul, pils fɔ slip, pils fɔ kɔntrol bɔn pikin) .
  • Fɔ drink pasmak
  • Fɔ smok
  • Fɔ it smɔl kabɔhaydrɛt (fɔ ɛgzampul, we yu de fast ɔ fala spɛshal it) .

Di tin dɛn we kin mek pɔsin gɛt Porphyria Cutanea Tarda (PCT) .

PCT na wan kayn pɔfyuria we kin apin to big pipul, ɛn i difrɛn smɔl frɔm ɔda kayn pɔfyuria. Dɔktɔ dɛn kɔl am "acquired causes." Dis min se yu kin gɛt dis sik ivin if yu nɔ gɛt jɛnɛtik muteshon.

כltu, tu כ mכr risk fכs dεm kin kam togεda fכ disrupt nכmal hεm prodakshכn. Dɛn kayn tin ya na:

  • Yuz ɛstrojen (fɔ ɛgzampul, bɔn kɔntrol pils ɔ ɔmon riplesmɛnt tritmɛnt) .
  • Fɔ drink pasmak
  • di ayron lεvεl dεm na di bכdi de inkrεs (`(Ayכn כvalod / hεmokromatosis)`)
  • Epataytis C infεkshכn
  • HIV infɛkshɔn
  • Fɔ smok

Aw dɔktɔ dɛn kin no bɔt dis sik?

Dɔktɔ dɛn kin no if yu gɛt pɔfyuria bay we dɛn de chɛk yu bɔdi ɛn du lɛb tɛst. Yu kin gɛt wan ɔ mɔ pan dɛn tɛst ya:

  • Blɔd tɛst dɛn
  • Test fɔ yu urine
  • Stɔl tɛst dɛn

Yu dɔktɔ go ɛksplen us tɛst yu nid fɔ du ɛn wetin ɛni tɛst kin fɛn. Yu dɔktɔ kin tɛl yu bak fɔ du tɛst fɔ yu ɛn ɔda pipul dɛn na yu famili. dis kin no di spεshal jin chenj dεm we kin mek yu gεt pכfyuria.

Aw dɛn kin trit pɔfyuria?

Di tritmɛnt we dɛn kin pik kin dipen pan di kayn pɔrfyuria we yu gɛt ɛn aw i kin afɛkt yu. Yu dɔktɔ go ɛksplen wetin bɛtɛ fɔ yu patikyula sik. Na sɔm jenɛral tin dɛn we yu kin ɛkspɛkt.

Tritmɛnt fɔ Akyu Pɔfyuria

If yu gɛt akyu pɔfyuria, yu kin nid fɔ go na ɔspitul fɔ tritmɛnt we yu gɛt "atak." Insay di ɔspitul, dɔktɔ dɛn go du wan ɔ mɔ pan dɛn tin ya:

  • Gi mεdikeshכn to lכw ALA εn PBG lεvεl (hεmin infushכn) .
  • Fɔ gi mɛrɛsin fɔ manej pen, nɔs, ɛn/ɔ epileptic stetɔs
  • Gi IV (intravenous) wata we yu de gi
  • Monitoring yu ilektrolayt levul en replenish dem if nid de
  • Fɔ pe atɛnshɔn to di chenj dɛn we de apin na yu maynd

Fɔ ɛp fɔ mek yu nɔ gɛt atak tumara bambay, yu dɔktɔ kin gi yu wan mɛrɛsin we dɛn kɔl givosiran. dis na injεkshכn we dεn kin gi εvri mכnt we de stכp di כva prodakshכn fכ ALA εn PBG.

Yu go nid bak fɔ avɔyd tin dɛn we kin mek yu gɛt dis sik lɛk:

  • Sɔm mɛrɛsin dɛn
  • Fastin ɛn sɔm we dɛn fɔ stɔp di kalori
  • Yuz rɔm
  • Yuz fɔ smok
  • San exposure (if yu gɛt VP ɔ HCP) .

Tritmɛnt fɔ di Cutaneous Porphyrias

I nɔ mata us kayn Cutaneous Porphyria yu gɛt, i impɔtant fɔ protɛkt yu skin fɔ mek yu nɔ gɛt di sik. Bɔku tɛm, na di sanskrin nɔmɔ nɔ kin du fɔ am. Di bɛst tin fɔ du na fɔ avɔyd fɔ de na di san as yu ebul. If yu rili nid fɔ de na di san, wɛr klos we go protɛkt yu frɔm di san. Yu dɔktɔ go advays yu bɔt wetin bɛtɛ fɔ yu. Yu go nid bak fɔ avɔyd sɔm kayn atifishal layt.

Tritmɛnt fɔ EPP/XLP

Yu dɔktɔ kin gi yu wan mɛrɛsin we dɛn kɔl afamelanotide. Dis na wan rili smɔl implant. Yu dɔktɔ go put am ɔnda di skin na yu bɛlɛ. Di mɛrɛsin we de kɔmɔt na di implant go ɛp fɔ ridyus di pen we pɔsin kin gɛt we i de na di san. Yu dɔktɔ go de wach bak aw yu liva de wok ɔltɛm ɛn mek shɔ se yu vaytamɛn D nɔ smɔl.

Pipul wae gɛt EPP/XLP kin gɛt galston. Sɔm EPP/XLP pasɛnt dɛn kin gɛt liva abnɔmaliti bak. If i siriɔs, di liva kin pwɛl. Dis kin nid fɔ gɛt liva transplant, sɔm tɛm dɛn kin afta dat dɛn kin transplant bon mɛro.

Tritmɛnt fɔ PCT

Di dɔktɔ kin gi yu tin dɛn lɛk:

  • Phlebotomy : If yu pul smɔl smɔl blɔd ɔltɛm , i de pul di ayɔn we pasmak na di bɔdi. Dis kin ɛp if ayron ɔvalod de ambɔg di hεm prodakshɔn.
  • Low-dose hydroxychloroquine: Dis mɛrɛsin de ɛp fɔ pul di pasmak porphyrins na yu bɔdi. Dɛn kin kɔmɔt na yu urine.

Tritmɛnt fɔ CEP

I rili impɔtant fɔ protɛkt yusɛf frɔm di san ɛn fluorescent layt fɔ mek yu nɔ gɛt blista ɛn kɔmplikeshɔn. If blista de apin, dɛn kin nid fɔ yuz antibayɔtik krim. If di infekshɔn rili bad, dɛn kin nid fɔ tek antibayɔtik we dɛn kin tek bay mɔt ɔ we dɛn kin tek IV.

Yu dɔktɔ go de wach yu ɛmoglobin ɔltɛm fɔ no if yu nid fɔ tek blɔd. Fɔ di wan dɛn we gɛt di sik we rili bad, i kin nid fɔ transplant dɛn bon mɛro. Dis na di wangren we fɔ mɛn di sik.

Ustɛm a fɔ go to dɔktɔ?

We yu gɛt pɔrfyuria, fɔ chɛk-ap ɔltɛm (``fɔl-ɔp'') wit yu dɔktɔ go bi pat pan yu layf. Yu dɔktɔ go tɛl yu we yu nid fɔ kam fɔ yu apɔntinmɛnt. Dɛn apɔntin ya impɔtant fɔ wach aw di sik de afɛkt yu bɔdi ɛn fɔ si ɛni sayn fɔ kɔmplikeshɔn. Yu go nid fɔ du blɔd ɛn urine tɛst ɔltɛm, ɛn yu go nid fɔ du tɛst fɔ chɛk aw ɔda ɔgan dɛn de wok.

Us kayn tumara bambay pɔrsin wae gɛt pɔrfyria kin ɛkspɛkt?

Di we aw yu de si tin dipen pan dɛn tin ya:

  • Di kayn pɔfyuria we yu gɛt
  • Aw i dɔn afɛkt yu bad bad wan
  • Ɛni kɔmplikeshɔn we kin apin

Yu dɔktɔ kin gi yu di kɔrɛkt aidia bɔt wetin fɔ ɛkspɛkt fɔ go bifo.

Pɔfyuria kin gɛt big impak pan yu ɛvride layf. Di bad bad sayn dɛm kin ambɔg yu nɔrmal tin dɛm wae yu kin du, ɛn dis kin mek i nɔr izi fɔ woke, kia fɔ yu famili, ɛn ɛnjɔy tin dɛm wae yu kin lɛk fɔ du. Yu kin fil taya bad bad wan, pan yu bɔdi ɛn yu maynd.

Tɛl yu dɔktɔ aw yu de fil. I kin tɛl yu bɔt tin dɛn ɛn sɔpɔt grup dɛn we go ɛp yu. Fɔ kɔnɛkt wit pɔrfyria kɔmyuniti kin ɛp yu fɔ lan mɔr bɔt yu kɔndishɔn ɛn fɛn we fɔ mɛn am.

Fɔ liv wit wan sik wae nɔr kin bɔrku lɛk pɔrfyria kin mek yu wangren, yu at pwɛl, ɛn yu kin mek yu fred. Yu go wish se yu fambul ɛn padi dɛn ɔndastand aw yu de fil. Sɔntɛm yu bin gɛt fɔ ɛksplen yu pɔrfyuria to ɔda pipul dɛn ɛn aks dɛn wetin mek yu nɔ ebul fɔ du sɔm tin dɛn.

Ɛnisay we yu de, no se nɔto yu wangren de.Pan ɔl we pɔfyuria nɔ kin bɔku we yu kɔmpia am to bɔku ɔda sik dɛn, bɔku pipul dɛn de we de wet fɔ ɛp yu. Join di onlayn porphyria sɔpɔt grup dɛm, ɔ aks yu dɔktɔ fɔ rifer yu to wan. We yu fɛn pipul dɛn we ɔndastand aw yu de fil, dat kin mek i izi fɔ yu fɔ dil wit di prɔblɛm dɛn we kin apin na layf.

Di impɔtant tin we wi nid fɔ lan frɔm dis (Take-Home Message) .

Pɔfyuria na wan sik we kɔmpleks ɛn we nɔ kin bɔku. Bɔt if yu lan bɔt am, fala yu dɔktɔ in advays, ɛn avɔyd tin dɛm wae de mek yu sik wɔs, yu kin liv fayn fayn wan wit de sik. E fayn fɔ pe atɛnshɔn to yu bɔdi, yu sayn dɛm, ɛn go to yu dɔktɔ di rayt tɛm. Mɛmba se nɔto yu wangren de, ɛn nɔ ɛva shem fɔ aks fɔ ɛp.


` Pכfyuria, hεm, pכfyurin, εnzym dεm, jεnεtik sik dεm, skin sik dεm, bεlε pen

⚠️ Important: The medical articles and information on Nirogi Lanka are for general awareness only, and are by no means a substitute for professional medical advice, diagnosis, or treatment. For any medical problem you have, consult a qualified physician immediately.

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Yu don eva yehri boht "Porphyria"? Lɛ wi tɔk bɔt dis sik we nɔ bɔku!
Aw di Bɔdi De WokJuly 5, 2026

Yu don eva yehri boht "Porphyria"? Lɛ wi tɔk bɔt dis sik we nɔ bɔku!

wan rili komplex εn amazing prכsεs we de apin insay yu bכdi na di prodyushכn fכ sכmtin we dεn kכl "Heme". Dis Heme impɔtant fɔ mek di Ɛmoglobin we de mek wi blɔd gɛt rɛd kɔlɔ ɛn i de kɛr ɔksijɛn ɔlsay na di bɔdi. nכto dat nכmכ, bכt dis Hεm de εp fכ bכku כda imכtant wok dεm insay wi sεl dεm. Bɔt sɔntɛnde di we aw dɛn kin mek dis Ɛm kin go rɔng. Na da tɛm de kɔndishɔn dɛn we de pan wan grup we nɔ kin bɔku we dɛn kɔl "Porphyria" kin apin. Nɔ wɔri, lɛ wi tɔk bɔt dis simpul wan.

Wetin rili na Pɔfyuria?

Fɔ tɔk am simpul wan, pɔfyuria na wan kɔmɔn nem fɔ wan grup we nɔ kin bɔku we kin afɛkt di we aw wi de mek hεm na wi bɔdi. Tink bɔt am dis we, fɔ mek hεm tan lɛk wan kɔmpleks tin we gɛt et stɛp. εvri wan pan dεn stεp dεm ya nid et spεshal εnzym dεm fכ wok fayn fayn wan. di εnzym dεm na protin dεm we de mek di kεmikכl dεm we wi bכdi de du kwik kwik wan. kεmikכl dεm we dεn kכl "pכfyurin" εn "pכfyrin prεkursכr" dεn de involv bak insay dis prכsεs.

Naw tink bɔt am, wetin kin apin if wan ɛnzaym we de na wan pan dɛn et step ya nɔ wok fayn? Na de di prɔblɛm bigin. lεk chen riakshכn, we da εnzym de nכ de wok, di pכfyurin dεm εn di pכfyurin prεkursכr dεm we bin kam bifo i bigin fכ kכmכt insay di bכdi in sεl dεm. Na dis kεmεkal dεm we de kכlכp de mek di sayn dεm fכ pכfyuria.

Yu kin de wɔnda, "Wetin mek dis ɛnzaym nɔ de wok fayn?" Bɔku tɛm, di tin we kin mek pɔsin gɛt dis sik na we i de chenj in jɛnɛtiks. dat min se, chenj de insay wan jin we de kכd fכ wan εnzym we de involv insay di prכsεs fכ mek hεm. Dis sik we dɛn kɔl pɔfyuria, bɔku tɛm na frɔm in mama ɛn papa. Dat min se dis jεnεtik mכtεshכn kin pas to כda pipul dεm na di famili. If dat apin, dɛn kin gɛt pɔfyuria bak ɔ dɛn kin gɛt di sik.

Bɔt nɔ wɔri. If yu kam fɔ no se yu gɛt dis sik, dɔktɔ dɛn kin ɛp yu fɔ kɔntrol yu sik dɛn, ɛn sɔntɛm dɛn kin ivin protɛkt yu. Dis kin ɛp fɔ ridyus di impak wae dɛn kayn tin ya kin gɛt pan yu layf.

Sɔm kayn pɔfyuria de?

Yɛs, na lɛk et kayn pɔfyuria de. Dɔktɔ dɛn kin kɔl dɛn ɔl togɛda "di pɔfyuria." Dɔktɔ dɛn go disayd us kayn pɔfyuria yu gɛt bay di sayn dɛn we yu gɛt ɛn usay na yu bɔdi dɛn ɛkstra kemikal dɛn we a bin dɔn tɔk bɔt kin gɛda.

in jεnarכl, dεn kin sheb dεn kayn pכfyuria ya to tu men grup dεm bay dεn simptom dεm:

  • Akyu Pɔfyuria (sɔntɛnde dɛn kin kɔl am "Akyu Ɛpatik Pɔfyria") .
  • Pɔfyria we de na di skin

Akyu Pɔfyuria

Dis grup fɔ sik kin mek yu bɛlɛ pen bad bad wan ɛn ɔda sayn dɛm. Sɔm kayn akyu pɔfyuria kin mek yu skin fil lɛk di san ɛn mek yu skin gɛt blista.

Na sɔm kayn akyu pɔfyuria dɛn ya:

  • Akyu Intamitεnt Pכfyuria (AIP): Dis na di kayn akyu pכfyuria we kכmכn pas כl. I kin mek yu bɛlɛ fil pen wantɛm wantɛm, bɔt i nɔ kin fil lɛk di san ɔ yu skin kin gɛt blista.
  • Hereditary Coproporphyria (HCP): Apat frɔm we yu bɛlɛ kin kramp wantɛm wantɛm, yu skin kin fil lɛk di san ɛn blista.
  • Variegate Porphyria (VP): Insay dis kɔndishɔn, yu kin gɛt bɛlɛ kramp wantɛm wantɛm ɛn/ɔ yu skin kin gɛt blista. Dɛn tin ya kin wɔs we yu de na di san.
  • ALAD-dεfisiεns pכfyuria: ALAD tinap fכ di εnzym "delta-aminolevulinic acid (ALA) dehydratase". Dis na wan kayn pɔrfyuria wae nɔr kin bɔrku, wae kin sho sɔm kayn sik wae dɛn smɔl.

Pɔfyria we de na di skin

Dis grup fɔ sik kin mek yu gɛt sayn dɛn na yu skin we yu de na di san. Dɛn tin ya kin bi pen, skin kɔlɔ kin chenj, swel, ɛn/ɔ blista. Dipen pan di ɔndalayn kɔz, sɔm pipul dɛn kin gɛt wan blista fɔm na dɛn skin we dɛn kɔl Cutaneous Porphyrias, ɔda wan dɛn nɔ kin gɛt blista fɔm.

Tayp dɛm fɔ Blistering Cutaneous Porphyrias:

  • Porphyria Cutanea Tarda (PCT): Dis na di kayn pɔfyuria we dɛn kin gɛt mɔ.
  • Congenital Erythropoietic Porphyria (CEP): "Erythropoietic" de tכk bכt yu bon mכro. dis na di men say we di ekstra pכfyurin dεm de kכmכt na dis sik. Dis na wan kayn pɔfyuria bak we nɔ kin bɔku.

Tayp dɛm fɔ Nɔn-blistering Cutaneous Porphyrias:

  • Erythropoietic Protoporphyria (EPP) ɛn X-linked Porphyria (XLP): Dɛn kin kɔl dɛn tin ya bak "di protoporphyrias" bikɔs di kemikal we kin gɛda na dɛn sik ya na "protoporphyrin." "X-linked" min se jεnεtik mכtεshכn de na di X kromozom.
  • Hepatoɛritropoiɛtik pɔfyuria: .Dis na wan kayn pɔfyuria bak we nɔ kin bɔku.

Wetin na di sayn dɛm fɔ Pɔfyuria?

De sayn dɛm wae yu kin gɛt ɛn aw lɔng dɛn kin las go dipen pan di kayn pɔrfyuria wae yu gɛt. Di sayn dɛm kin rili smɔl ɔr kin rili bad. Sɔm pipul dɛm wae gɛt pɔrfyria nɔr kin gɛt ɛni sayn atɔl. Bɔt sɔm tɛm dɛn de, dɛn sik ya kin mek pɔsin in layf de pan denja if dɛn nɔ trit dɛn fayn.

Simptom dɛm fɔ Akyu Pɔfyuria

akyu pכfyuria de kכz fכ inkrεs pan di hεm prεkursכr dεm aminolevulinic acid (ALA) εn porphobilinogen (PBG). Dɛn tin ya kin afɛkt di we aw yu nervɔs sistɛm de wok. Tink bɔt am, ɔltin frɔm we yu de muv yu mɔsul dɛn to we yu de digest it, na di nervɔs sistɛm de kɔntrol am. Pכfyuria de mek di nεv sεstem nכ de wok fayn, we de mek di simptom dεm we de fכm "attak."

If yu gɛt akyu pɔfyuria, sɔm sayn dɛn lɛk:

  • Wan bad bad bɛlɛ pen
  • Nɔs ɛn vɔmit
  • Banbɛlɛ
  • Pen na di chɛst, bak, an, ɛn/ɔ leg
  • Wɔri
  • Nɔ ebul slip
  • Di chenj dɛm na yu maynd lɛk fɔ kɔnfyus, fɔ de agyu, ɛn fɔ si tin dɛn we yu de tink bɔt
  • Wok tranga wan
  • At bit kwik kwik wan (Tachycardia) .
  • Di ay blɔd prɛshɔn
  • Yu nɔ de fil fayn, yu de fil lɛk yu de swɛt (Paresthesia) .
  • di mכsul dεm we de wik כ yu paralayz (dis kin afekt di mכsul dεm we de εp yu fכ brith bak) .
  • Di sik dɛn we kin mek pɔsin sik
  • Dak ɔ rɛd urine (pɔfyrin ɛn ɔda kemikal dɛn kin chenj di kɔlɔ fɔ di urine) .

If yu gɛt hereditary coproporphyria ``(HCP)`` ɔ variegate porphyria ``(VP)``, yu skin kin sɛnsitiv to san layt. If yu de na di san, i kin mek yu gɛt blista, yu skin kin chenj in kɔlɔ, ɛn/ɔ yu kin gɛt skata.

Aw lɔŋ akyu pɔfyuria kin las?

Wan atak lɛk dis kin las frɔm tri to sɛvin dez. Bɔt, mɔ if dɛn nɔ trit am, i kin las fɔ lɔng tɛm. E kin tek sɔm wik to mɔnt fɔ mek di sik nɔr de igen. Yu kin jɔs gɛt wan ɔ sɔm atak dɛn na yu layf. Bɔt sɔm pipul dɛn kin gɛt bɔku atak dɛn insay wan ia.

Akyu pɔfyuria kin mek yu gɛt lɔng tɛm kɔmplikeshɔn lɛk ay blɔd prɛshɔn, kidni we nɔ de wok fayn, ɛn smɔl tɛm, liva kansa.

Di simptom dɛm fɔ Nɔn-blistering Cutaneous Porphyrias (EPP/XLP) .

Pɔfyuria we de na di skin kin mek yu gɛt sayn dɛn na yu skin we yu de na di san. Dis inklud di san layt we de kɔmɔt dairekt na do, ɛn di san layt we de kam insay tru winda dɛn. Sɔm kayn atifishal layt kin mek yu gɛt sayn dɛn bak. Dis kayn pɔfyuria nɔ de mek di bɛlɛ pen wantɛm wantɛm ɔ ɔda sayn dɛm we kin tan lɛk "atak."

We yu bigin fɔ fil we di san de shayn, yu kin fil lɛk se yu de swɛt fɔs. If yu nɔ kɔmɔt na di san kwik, yu kin gɛt wetin dɔktɔ dɛn kɔl "phototoxic reaction." Yu kin gɛt sɔm kayn sik dɛn na yu skin lɛk dis, mɔ na yu fes, yu an, ɛn yu fut:

  • I de it
  • Fɔ mek pɔsin nɔ ebul fɔ du natin
  • De swɛl
  • Big pen na di say we di sik afɛkt
  • Smɔl pepul, rɛd, ɔ brawn spat dɛn na di skin (`(Petechiae)`)

Dɛn riakshɔn ya kin rili pen ɛn dɛn kin las frɔm tu to fayv dez. Yu fɔ tray fɔ de insay os ɛn kol di say dɛn we di sik dɔn ambɔg (fɔ ɛgzampul, wit kol briz we kɔmɔt na ɛya kondishɔn).

Di simptom dɛm fɔ Blistering Cutaneous Porphyrias

Pɔfyuria Kutanɛa Tarda (PCT) .

Pipul wae gɛt PCT kin gɛt sɔm kayn sik lɛk:

  • Skin blista (bɔku tɛm na di bak pat pan di an) .
  • Ska dɛn we de na di wɔl
  • Di kɔlɔ we di skin kin chenj
  • Di skin we de tik
  • Fraylayz skin we kin te izi wan wit ivin di smɔl injuri ɔ prɛshɔn
  • di ia we de gro pasmak (bɔku tɛm na di fes, di sayd dɛn na di fɔɛd, ɔ na say dɛn lɛk di chin) .

Kɔnjɛnital Ɛritropoiɛtik Pɔfyria (CEP) .

Dis siriɔs kayn pɔfyuria kin bigin fɔ sho di sayn dɛm jɔs afta dɛn bɔn am ɔr rili ali na layf. Di fɔs sayn na rɛd urine. Bikɔs di pikin in dayapɛt gɛt rɛd rɛd stɛyn, bɔku tɛm dɛn kin tɛmpt dɔktɔ dɛn fɔ chɛk fɔs if i gɛt infekshɔn na in urinary tract.

Ɔda sayn ɛn simptom dɛm fɔ CEP na:

  • Sivɛri skin blistering ivin if yu de pan ivin smɔl san ɔ fluorescent layt
  • Blista dɛn kin gɛt di sik, we kin mek di bon dɛn gɛt infɛkshɔn ɛn di bon dɛn kin pwɛl
  • Sכm pat dεm na di fes we de lכs (iya εn nos kכtilaj) .
  • Tit dɛn de tɔn grey-brawn
  • Anemia - Dis min se di rεd bכdi sεl dεm nכ de na di bכdi. Sɔntɛnde, i kin nid fɔ transfyushɔn blɔd.
  • Di splin we de mek di bɔdi big
  • Lכw pletlεt kכnt (`(Lכw pletlet kכnt)`)

Wetin na di tin dɛn we kin mek pɔsin gɛt pɔfyuria?

Akyu pכfyuria kin kכz fכ chenj dεm na sכm jin dεm. Bɔt jɔs bikɔs yu gɛt chenj na yu jɛnɛtiks nɔ min se yu go gɛt di sayn dɛn we de sho se yu gɛt pɔrfyuria.Bɔrku pipul dɛm wae gɛt di jenɛtik chenj wae gɛt fɔ du wit pɔrfyria nɔr kin gɛt dis sik. Dis min se di jenɛtik tɛst nɔmɔ nɔ go ebul fɔ kɔnfɔm di diagnosis. di onli we fכ no fכ sכri if yu simptom dεm na akyu pכfyuria na fכ tεst yu urine fכ ALA εn PBG lεvεl.

Masta sabi bukman dɛn tink se ɔda tin dɛn lɛk ɔmon, sɔm mɛrɛsin dɛn, ɛn wetin yu de it ɛn drink, kin rili ɛp fɔ mek di sik bigin fɔ atak yu. If dɛn bɔn yu wit wan jenɛtik muteshɔn we gɛt fɔ du wit akyu pɔfyuria, dɛn ɔda tin ya kin mek di atak wɔs.

Tin dɛm wae kin mek dɛn kayn atak ya na:

  • di inkrεs lεvεl dεm fכ uman sεks כmon dεm (fכ egzampl, di tεm we di luteal fεz na yu mכnt mεnstral saykl) .
  • Sɔm mɛrɛsin dɛn (fɔ ɛgzampul, pils fɔ slip, pils fɔ kɔntrol bɔn pikin) .
  • Fɔ drink pasmak
  • Fɔ smok
  • Fɔ it smɔl kabɔhaydrɛt (fɔ ɛgzampul, we yu de fast ɔ fala spɛshal it) .

Di tin dɛn we kin mek pɔsin gɛt Porphyria Cutanea Tarda (PCT) .

PCT na wan kayn pɔfyuria we kin apin to big pipul, ɛn i difrɛn smɔl frɔm ɔda kayn pɔfyuria. Dɔktɔ dɛn kɔl am "acquired causes." Dis min se yu kin gɛt dis sik ivin if yu nɔ gɛt jɛnɛtik muteshon.

כltu, tu כ mכr risk fכs dεm kin kam togεda fכ disrupt nכmal hεm prodakshכn. Dɛn kayn tin ya na:

  • Yuz ɛstrojen (fɔ ɛgzampul, bɔn kɔntrol pils ɔ ɔmon riplesmɛnt tritmɛnt) .
  • Fɔ drink pasmak
  • di ayron lεvεl dεm na di bכdi de inkrεs (`(Ayכn כvalod / hεmokromatosis)`)
  • Epataytis C infεkshכn
  • HIV infɛkshɔn
  • Fɔ smok

Aw dɔktɔ dɛn kin no bɔt dis sik?

Dɔktɔ dɛn kin no if yu gɛt pɔfyuria bay we dɛn de chɛk yu bɔdi ɛn du lɛb tɛst. Yu kin gɛt wan ɔ mɔ pan dɛn tɛst ya:

  • Blɔd tɛst dɛn
  • Test fɔ yu urine
  • Stɔl tɛst dɛn

Yu dɔktɔ go ɛksplen us tɛst yu nid fɔ du ɛn wetin ɛni tɛst kin fɛn. Yu dɔktɔ kin tɛl yu bak fɔ du tɛst fɔ yu ɛn ɔda pipul dɛn na yu famili. dis kin no di spεshal jin chenj dεm we kin mek yu gεt pכfyuria.

Aw dɛn kin trit pɔfyuria?

Di tritmɛnt we dɛn kin pik kin dipen pan di kayn pɔrfyuria we yu gɛt ɛn aw i kin afɛkt yu. Yu dɔktɔ go ɛksplen wetin bɛtɛ fɔ yu patikyula sik. Na sɔm jenɛral tin dɛn we yu kin ɛkspɛkt.

Tritmɛnt fɔ Akyu Pɔfyuria

If yu gɛt akyu pɔfyuria, yu kin nid fɔ go na ɔspitul fɔ tritmɛnt we yu gɛt "atak." Insay di ɔspitul, dɔktɔ dɛn go du wan ɔ mɔ pan dɛn tin ya:

  • Gi mεdikeshכn to lכw ALA εn PBG lεvεl (hεmin infushכn) .
  • Fɔ gi mɛrɛsin fɔ manej pen, nɔs, ɛn/ɔ epileptic stetɔs
  • Gi IV (intravenous) wata we yu de gi
  • Monitoring yu ilektrolayt levul en replenish dem if nid de
  • Fɔ pe atɛnshɔn to di chenj dɛn we de apin na yu maynd

Fɔ ɛp fɔ mek yu nɔ gɛt atak tumara bambay, yu dɔktɔ kin gi yu wan mɛrɛsin we dɛn kɔl givosiran. dis na injεkshכn we dεn kin gi εvri mכnt we de stכp di כva prodakshכn fכ ALA εn PBG.

Yu go nid bak fɔ avɔyd tin dɛn we kin mek yu gɛt dis sik lɛk:

  • Sɔm mɛrɛsin dɛn
  • Fastin ɛn sɔm we dɛn fɔ stɔp di kalori
  • Yuz rɔm
  • Yuz fɔ smok
  • San exposure (if yu gɛt VP ɔ HCP) .

Tritmɛnt fɔ di Cutaneous Porphyrias

I nɔ mata us kayn Cutaneous Porphyria yu gɛt, i impɔtant fɔ protɛkt yu skin fɔ mek yu nɔ gɛt di sik. Bɔku tɛm, na di sanskrin nɔmɔ nɔ kin du fɔ am. Di bɛst tin fɔ du na fɔ avɔyd fɔ de na di san as yu ebul. If yu rili nid fɔ de na di san, wɛr klos we go protɛkt yu frɔm di san. Yu dɔktɔ go advays yu bɔt wetin bɛtɛ fɔ yu. Yu go nid bak fɔ avɔyd sɔm kayn atifishal layt.

Tritmɛnt fɔ EPP/XLP

Yu dɔktɔ kin gi yu wan mɛrɛsin we dɛn kɔl afamelanotide. Dis na wan rili smɔl implant. Yu dɔktɔ go put am ɔnda di skin na yu bɛlɛ. Di mɛrɛsin we de kɔmɔt na di implant go ɛp fɔ ridyus di pen we pɔsin kin gɛt we i de na di san. Yu dɔktɔ go de wach bak aw yu liva de wok ɔltɛm ɛn mek shɔ se yu vaytamɛn D nɔ smɔl.

Pipul wae gɛt EPP/XLP kin gɛt galston. Sɔm EPP/XLP pasɛnt dɛn kin gɛt liva abnɔmaliti bak. If i siriɔs, di liva kin pwɛl. Dis kin nid fɔ gɛt liva transplant, sɔm tɛm dɛn kin afta dat dɛn kin transplant bon mɛro.

Tritmɛnt fɔ PCT

Di dɔktɔ kin gi yu tin dɛn lɛk:

  • Phlebotomy : If yu pul smɔl smɔl blɔd ɔltɛm , i de pul di ayɔn we pasmak na di bɔdi. Dis kin ɛp if ayron ɔvalod de ambɔg di hεm prodakshɔn.
  • Low-dose hydroxychloroquine: Dis mɛrɛsin de ɛp fɔ pul di pasmak porphyrins na yu bɔdi. Dɛn kin kɔmɔt na yu urine.

Tritmɛnt fɔ CEP

I rili impɔtant fɔ protɛkt yusɛf frɔm di san ɛn fluorescent layt fɔ mek yu nɔ gɛt blista ɛn kɔmplikeshɔn. If blista de apin, dɛn kin nid fɔ yuz antibayɔtik krim. If di infekshɔn rili bad, dɛn kin nid fɔ tek antibayɔtik we dɛn kin tek bay mɔt ɔ we dɛn kin tek IV.

Yu dɔktɔ go de wach yu ɛmoglobin ɔltɛm fɔ no if yu nid fɔ tek blɔd. Fɔ di wan dɛn we gɛt di sik we rili bad, i kin nid fɔ transplant dɛn bon mɛro. Dis na di wangren we fɔ mɛn di sik.

Ustɛm a fɔ go to dɔktɔ?

We yu gɛt pɔrfyuria, fɔ chɛk-ap ɔltɛm (``fɔl-ɔp'') wit yu dɔktɔ go bi pat pan yu layf. Yu dɔktɔ go tɛl yu we yu nid fɔ kam fɔ yu apɔntinmɛnt. Dɛn apɔntin ya impɔtant fɔ wach aw di sik de afɛkt yu bɔdi ɛn fɔ si ɛni sayn fɔ kɔmplikeshɔn. Yu go nid fɔ du blɔd ɛn urine tɛst ɔltɛm, ɛn yu go nid fɔ du tɛst fɔ chɛk aw ɔda ɔgan dɛn de wok.

Us kayn tumara bambay pɔrsin wae gɛt pɔrfyria kin ɛkspɛkt?

Di we aw yu de si tin dipen pan dɛn tin ya:

  • Di kayn pɔfyuria we yu gɛt
  • Aw i dɔn afɛkt yu bad bad wan
  • Ɛni kɔmplikeshɔn we kin apin

Yu dɔktɔ kin gi yu di kɔrɛkt aidia bɔt wetin fɔ ɛkspɛkt fɔ go bifo.

Pɔfyuria kin gɛt big impak pan yu ɛvride layf. Di bad bad sayn dɛm kin ambɔg yu nɔrmal tin dɛm wae yu kin du, ɛn dis kin mek i nɔr izi fɔ woke, kia fɔ yu famili, ɛn ɛnjɔy tin dɛm wae yu kin lɛk fɔ du. Yu kin fil taya bad bad wan, pan yu bɔdi ɛn yu maynd.

Tɛl yu dɔktɔ aw yu de fil. I kin tɛl yu bɔt tin dɛn ɛn sɔpɔt grup dɛn we go ɛp yu. Fɔ kɔnɛkt wit pɔrfyria kɔmyuniti kin ɛp yu fɔ lan mɔr bɔt yu kɔndishɔn ɛn fɛn we fɔ mɛn am.

Fɔ liv wit wan sik wae nɔr kin bɔrku lɛk pɔrfyria kin mek yu wangren, yu at pwɛl, ɛn yu kin mek yu fred. Yu go wish se yu fambul ɛn padi dɛn ɔndastand aw yu de fil. Sɔntɛm yu bin gɛt fɔ ɛksplen yu pɔrfyuria to ɔda pipul dɛn ɛn aks dɛn wetin mek yu nɔ ebul fɔ du sɔm tin dɛn.

Ɛnisay we yu de, no se nɔto yu wangren de.Pan ɔl we pɔfyuria nɔ kin bɔku we yu kɔmpia am to bɔku ɔda sik dɛn, bɔku pipul dɛn de we de wet fɔ ɛp yu. Join di onlayn porphyria sɔpɔt grup dɛm, ɔ aks yu dɔktɔ fɔ rifer yu to wan. We yu fɛn pipul dɛn we ɔndastand aw yu de fil, dat kin mek i izi fɔ yu fɔ dil wit di prɔblɛm dɛn we kin apin na layf.

Di impɔtant tin we wi nid fɔ lan frɔm dis (Take-Home Message) .

Pɔfyuria na wan sik we kɔmpleks ɛn we nɔ kin bɔku. Bɔt if yu lan bɔt am, fala yu dɔktɔ in advays, ɛn avɔyd tin dɛm wae de mek yu sik wɔs, yu kin liv fayn fayn wan wit de sik. E fayn fɔ pe atɛnshɔn to yu bɔdi, yu sayn dɛm, ɛn go to yu dɔktɔ di rayt tɛm. Mɛmba se nɔto yu wangren de, ɛn nɔ ɛva shem fɔ aks fɔ ɛp.


` Pכfyuria, hεm, pכfyurin, εnzym dεm, jεnεtik sik dεm, skin sik dεm, bεlε pen

⚠️ Important: The medical articles and information on Nirogi Lanka are for general awareness only, and are by no means a substitute for professional medical advice, diagnosis, or treatment. For any medical problem you have, consult a qualified physician immediately.

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