Yu no bɔt Lupus (Systemic Lupus Erythematosus - SLE) ? Lɛ wi tɔk bɔt am!

Sɔntɛnde, yu kin fil taya we yu nɔ go ebul fɔ imajin, yu bɔdi kin at, yu jɔyn dɛn kin pen, ɔ yu skin kin gɛt rɔsh? If yu nɔr jɔs gɛt dɛn tin ya wan ɔr tu tɛm, bɔt yu gɛt bɔrku wan tɛm, de kɔz kin bi wan sik wae dɛn kɔl lupus. Nɔ wɔri, pan ɔl we dis nem kin tan lɛk big tin, na sik we dɛn kin kɔntrol bɔku bɔku wan if dɛn tɛl yu fayn fayn wan ɛn gɛt di rayt tritmɛnt. Tide, wi go tɔk bɔt lupus insay wan simpul we we yu go ɔndastand.

Wetin na Lupus? Lɛ wi ɔndastand am simpul wan.

Fɔ tɔk am simpul wan, lupus na sik we wi bɔdi nɔ de wok fayn . Nɔmal wan, wi imyun sistɛm kin protɛkt wi frɔm sik ɛn jem. Bɔt wetin kin apin na pɔsin we gɛt lupus in bɔdi na dat dis imyun sistɛm kin mistek atak di wɛlbɔdi sɛl ɛn tisu dɛn na in yon bɔdi. Imajin, wetin de apin ya tan lɛk di ami we de protɛkt wi kɔntri, we de mistek atak di pipul dɛn na wi yon kɔntri. Dɔktɔ dɛn kin kɔl dis ɔtoimyun sik.

We di imyun sistɛm atak dis we, inflammation , we min se i kin swel, i kin rɛd, ɛn i kin fil pen na difrɛn pat dɛn na di bɔdi. Dis kin afɛkt ɛni pat na di bɔdi. Fɔ ɛgzampul:

• Yu skin
• Blɔd
• Jɔnkshɔn dɛn
• Kidni dɛn
• Bren
• At
• Lɔng

I rili impɔtant fɔ go to dɔktɔ if yu notis ɛni nyu pen, yu skin rɔsh, ɔ chenj na yu skin, yu ia, ɔ yu yay.

Wetin na di men kayn lupus?

We dɔktɔ dɛn kin tɔk bɔt lupus, dɛn kin kɔl am Systemic Lupus Erythematosus (SLE)''. Dis na di kayn lupus we kin bɔku pas ɔl . SLE'' min se di kכndyushכn de afekt yu כl bכdi. Bɔku ɔda kayn dɛn de bak:

• Cutaneous lupus erythematosus: Insay dis kayn lupus, di sik kin jɔs afɛkt yu skin .
• Drug-induced lupus: Sɔm mɛrɛsin kin mek yu gɛt lupus simptom as sayd ɛfɛkt. Bɔt bɔku tɛm, dis kin apin fɔ shɔt tɛm . Dis min se di sik kin go afta dɛn dɔn stɔp di mɛrɛsin.
• Neonatal lupus: Dis nɔ kin apin so ɔltɛm. Sɔntɛnde, pikin dɛn we dɛn jɔs bɔn kin gɛt lupus. Nɔto ɔl di pikin dɛn we mama we gɛt lupus bɔn go gɛt lupus, bɔt i kin gɛt smɔl risk.

Wetin na di sayn dɛm fɔ lupus?

Lupus na sik wae de sho insɛf difrɛn we. Dis min se di sayn dɛm kin difrɛn frɔm wan pɔrsin to ɔda pɔrsin , ɛn aw de sik kin tranga kin difrɛn bak. Sɔm pipul dɛn kin gɛt sayn dɛn we rili bad, ɛn ɔda wan dɛn kin gɛt sɔm kayn sik dɛn we nɔ kin izi fɔ dɛn.

Bɔrku tɛm, di sik wae de kam pan lupus nɔr kin kɔntinyu.. Dɛn kin kam ɛn go. Wi kin kɔl di tɛm we di sik dɛn kin bɔku "flare-up." Insay dɛn tɛm ya, di sik kin so bad dat yu nɔ kin ivin ebul fɔ du di tin dɛn we yu de du ɛvride. Sɔm tɛm dɛn de bak we di sik kin ridyus ɔ nɔ kin gɛt ɛni sayn. Dɛn kɔl dɛn tin ya "rɛmishɔn."

Bɔrku tɛm, di sayn dɛm kin kam smɔl smɔl . Fɔs, na wan ɔ tu sayn dɛn nɔmɔ kin apin, bɔt leta mɔ sayn dɛn kin apin ɔ di wan dɛn we dɔn de kin chenj.

Na sɔm pan de sayn dɛm wae kin kam pan pɔrsin:

• Jɔyn pen, mɔsul pen, chɛst pen (especially we yu de tek dip briz) .
• Ed de at
• Skin rash (bɔku tɛm na wan rash we tan lɛk bɔtaflay we de rɔn akɔdin to di chɛst ɛn nos na di tu say dɛn na di fes - Bɔtaflay rash - yu kin si)
• Fiva
• Di ia we de lɔs
• Sɔl dɛn na yu mɔt
• Taya we nɔ de dɔn (fɔ fil taya ɔltɛm) .
• I nɔ izi fɔ blo ((Dyspnea)) .
• Gland dɛn we dɔn swel
• Di an, fut, ɔ fes kin swel
• Kɔnfyus
• Blɔd we de klɔt

Sɔntɛnde, lupus kin kam wit ɔda wɛlbɔdi prɔblɛm dɛn, lɛk:

• Fɔtosɛnsitiviti ( sɛnsitiviti to san layt) .
• Dray yay
• Pwɛl hat ɔr ɔda mental wɛl bɔdi prɔblɛm
• Epileptic kondishɔn (Sɛiz) .
• Di ɛmoglobin we de na di blɔd we de go dɔŋ (anemia) .
• Raynaud’s syndrome (di finga ɛn fut finga dɛn kin blu, blu we yu kol weta) .
• Ɔstioporosis (we di bon dɛn kin tan lɛk tin) .
• At sik
• Kidni sik

Wetin kin mek pɔsin gɛt lupus?

Masta sabi bukman dɛn stil nɔ no di rayt tin we kin mek pɔsin gɛt lupus , bɔt risach dɔn sho se sɔm tin dɛn kin mek pɔsin gɛt lupus.

• Jεnεtik fכs: Yu kin gεt lupus if yu gεt sכm chenj dεm (jεnεtik mכtεshכn) na yu jin dεm. Dis min se if pɔsin na yu famili gɛt am, yusɛf gɛt smɔl chans fɔ gɛt am.
• כmon dεm: dεn tink se di bכdi in rεspכns to sכm כmon dεm, spεshal wan εstrojen, de ple rol fכ divεlכpmεnt fכ lupus. Dis na di rizin we mek lupus kin bɔku pan uman dɛn.
• Di tin dɛm we de apin na di envayrɔmɛnt: Tin dɛm na di envayrɔmɛnt we yu de, fɔ ɛgzampul, di pwɛl pwɛl we di briz de pwɛl ɛn we yu de na di san, kin afɛkt yu risk fɔ gɛt lupus.
• Yu wɛl bɔdi istri: If yu na pɔsin we de smok, yu gɛt bɔku strɛs, ɔ yu gɛt ɔda sik dɛn we pɔsin kin gɛt we i de fɛt, yu kin gɛt lupus.

Udat de pan big risk fɔ gɛt lupus?

Ɛnibɔdi kin gɛt lupus, bɔt sɔm grup dɛn kin gɛt mɔ risk:

• Uman dɛn: Ɛspɛshali uman dɛn we ol bitwin 15 ɛn 44 ia.
• Blak pipul dɛn.
• Hispanik pipul dɛn.
• Asian (wi de pan dis grup tu).
• Indian pipul dɛn na Amɛrika, Alaska Indian dɛn, ɛn Fɔs Neshɔn pipul dɛn.
• Di pipul dɛn we de na di Pasifik Ayland dɛn.
• Pipul wae gɛt wan mama ɔ papa wae gɛt lupus.

Aw dɛn kin no if pɔsin gɛt lupus?

Sɔntɛnde, fɔ no if yu gɛt lupus kin tranga smɔl. Bikɔs i kin afɛkt bɔku difrɛn pat dɛn na di bɔdi, di sayn dɛn kin rili difrɛn. Dɔktɔ go no if yu gɛt lupus bay we i du ɛgzam pan in bɔdi ɛn du sɔm tɛst dɛn .

De dɔktɔ ɔr nɔs go tek tɛm lisin to yu sayn dɛm. Tɛl dɛm ɔltin wae yu no bɔt wae yu fɔs bigin fɔ gɛt dis sik, us chenj yu dɔn notis, ɛn ɛni sik wae yu bin dɔn gɛt bifo ɛn ɛni mɛrɛsin wae yu de tek naw.

Nɔ fred fɔ tɛl yu dɔktɔ ɛnitin we yu fil se i strenj to yu, ilɛksɛf na smɔl tin. Nɔbɔdi nɔ sabi yu bɔdi pas yu.

Us tɛst dɛn kin du fɔ no if pɔsin gɛt lupus?

Nɔr wan tɛst nɔr de fɔ kɔnfirm se yu gɛt lupus. Dɔktɔ dɛn kin yuz difrɛn diagnosis fɔ pul ɔda sik dɛn . Dis min se dɛn kin du sɔm tɛst fɔ no wetin de mek yu gɛt di sik ɛn mek shɔ se ɔda sik dɛn nɔ fɔ blem bifo dɛn kam fɔ no se yu gɛt lupus. Sɔm pan di tɛst dɛm we dɛn kin yuz fɔ dis na:

• Blɔd tɛst: Dɛn tin ya kin chɛk aw yu imyun sistɛm de wok, if yu gɛt infɛkshɔn, kɔndishɔn lɛk anemia, ɔ yu blɔd sɛl nɔ bɔku.
• Urinalysis: Dis kin ɛp fɔ chɛk yu urine fɔ sayn dɛn fɔ infekshɔn ɔ ɔda wɛlbɔdi prɔblɛm.
• Antinyukliar antibodi (ANA) tεst: Dis de tεst fכ antibodi dεm. Antibodi dεm na protin mak dεm we de sho wi bכdi in histri fכ fכt sik. Bɔrku pipul dɛm wae gɛt lupus gɛt ay lɛvɛl pan dɛn ANA antibodi ya. Dis sho se di imyun sistɛm de wok pasmak.
• Skin ɔ kidni bayɔpsi: Sɔntɛnde dɛn kin tek smɔl pat pan di skin ɔ kidni ɛn chɛk am ɔnda maykroskɔp fɔ si if di imyun sistɛm dɔn pwɛl am.

Wetin na di tritmɛnt fɔ lupus?

Yu dɔktɔ go tɛl yu fɔ tek tritmɛnt fɔ lupus fɔ kɔntrol ɛn manej yu sik dɛn . Di men gol dɛn we de ya na:

• Fɔ mek di bɔdi ɔgan dɛn nɔ pwɛl bɛtɛ.
• Fɔ ridyus di impak we lupus gɛt pan yu ɛvride layf.
• Fɔ mek yu nɔ gɛt flare-up.
• Fɔ ridyus di kayn sik wae de kam pan pɔrsin wae de kam pan pɔrsin wae gɛt dis sik bad bad wan.

Bɔku pan di wan dɛn we gɛt lupus kin nid fɔ tek sɔm mɛrɛsin dɛn we dɛn jɔyn togɛda.Yu kin nid sɔm pan dɛn mɛrɛsin ya:

• Hydroxychloroquine: Dis na wan mɛrɛsin we de insay wan klas we dɛn kɔl sik-modifying antirheumatic drug (DMARD). I de ɛp fɔ pul di lupus simptom dɛm ɛn kɔntrol aw di sik de go bifo.
• Nɔnsterɔyd anti-inflammatory drugs (NSAID): Dɛn wan ya na ɔva-di-kɔnta (OTC) drɔgs we de ridyus pen ɛn inflammation (swelling). Yu dɔktɔ go tɛl yu us kayn NSAID fayn fɔ yu ɛn aw lɔng yu fɔ tek am. Nɔ tek dɛn tin ya fɔ pas 10 dez wan tɛm we yu nɔ gɛt yu dɔktɔ in advays.
• Kɔtikosterɔyd: Dɛn wan ya na pawaful mɛrɛsin dɛn we dɔktɔ kin gi fɔ mek di bɔdi nɔ wam. Prɛdnisɔn na kɔtikosterɔyd we dɛn kin yuz fɔ lupus. Dɛn kin gi dɛn as pils ɔ as injɛkshɔn dairekt insay wan jɔyn.
• Immunosuppressants: Dɛn mɛrɛsin ya de wok bay we dɛn de ridyus ɛn kɔntrol di wok we yu imyun sistɛm de du, we de ɛp fɔ mek di tisu nɔ pwɛl ɛn nɔ inflam.

Apat frɔm dɛn men kayn mɛrɛsin ya, yu kin nid fɔ gɛt difrɛn tritmɛnt fɔ sɔm patikyula sayn dɛm we yu gɛt ɔ fɔ ɔda wɛlbɔdi prɔblɛm dɛm we lupus kin kam wit (e.g. anemia, ay blɔd prɛshɔn, bon dɛm we de tan).

Wetin yu kin ɛkspɛkt if yu gɛt lupus?

Lupus na wan sik we de apin to yu layf (chronic) . Dis min se yu go gɛt fɔ dil wit ɛn manej di lupus simptom dɛm ɔlsay na yu layf.

Lupus na tin we pɔsin nɔ kin ebul fɔ no bifo tɛm . Dis min se di we aw i de afɛkt yu kin chenj wan wan tɛm. So, yu fɔ go to yu dɔktɔ ɔltɛm fɔ wach di chenj dɛn we de apin na yu sik dɛn.

As yu de lan fɔ liv wit lupus, yu go nid fɔ wok wit wan tim fɔ dɔktɔ dɛn . Yu famili dɔktɔ (primary care provider) go tɛl yu di spɛshal pipul dɛn we yu nid. Bɔrku tɛm, yu go si rεumatɔlɔjis — dɔktɔ wae spɛshal fɔ no ɛn trit ɔtoimyun sik dɛm. De ɔda spɛshal pipul dɛm wae yu nid go dipen pan yu sik dɛm ɛn aw dɛn de afɛkt yu bɔdi.

Yu tink se dɛn kin mɛn lupus kpatakpata?

Bɔt i sɔri fɔ no se naw, no mɛrɛsin nɔ de fɔ mɛn lupus . Bɔt yu dɔktɔ kin ɛp yu fɔ fɛn kɔmbayn tritmɛnt dɛm wae go ɛp fɔ kɔntrol yu sik dɛm ɛn ɛp yu fɔ gɛt sɔm tɛm fɔ lɛ yu nɔr gɛt dis sik — wan tɛm wae yu nɔr gɛt ɔr nɔr gɛt bɔrku sayn dɛm.

Yu tink se dɛn kin mek dɛn nɔ gɛt lupus?

Bikɔs masta sabi bukman dɛn stil nɔ no bɛtɛ bɛtɛ wan wetin kin mek pɔsin gɛt lupus, no we nɔ de fɔ mek i nɔ gɛt am . If wan pan yu mama ɛn papa gɛt lupus, tɔk to yu dɔktɔ bɔt di prɔblɛm we yu gɛt.

Aw fɔ mek yu nɔ gɛt lupus flare-up?

Pan ɔl we yu nɔ go ebul fɔ avɔyd lupus, bɔku tin dɛn de we yu kin du fɔ ridyus ɛn mek yu nɔ gɛt flare-up. Dis inklud fɔ avɔyd tin dɛm wae de mek yu sik wɔs.

• Nɔ put yusɛf na di san: Fɔ sɔm pipul dɛn, if yu de na di san fɔ lɔng tɛm, dat kin mek di sik dɛn we de sho se yu gɛt lupus, wɔs. So, stɔp yu tɛm fɔ de na do di tɛm we di san kin bɔku (bɔku tɛm bitwin 10 a.m. ɛn 4 p.m.). If yu go na do, wɛr lɔng sliv shit, hat, ɛn klos we go protɛkt yu frɔm di san. Yuz sanskrin we gɛt SPF we at le 50 .
• Stay active: Sɔntɛnde, yu jɔyn pen kin mek i nɔ izi fɔ muv ɔ ɛksesaiz. Bɔt fɔ muv saful wan ɛn ɛksesaiz na di bɛst we fɔ ridyus di sayn dɛm lɛk pen ɛn stif. Fɔ waka, fɔ rayd baysikul, fɔ swim, fɔ yoga, ɛn fɔ tai chi, ɔl na fayn we fɔ mek yu bɔdi muv ɛn nɔ put tumɔs prɛshɔn pan yu jɔyn dɛn. Aks yu dɔktɔ bɔt ɛksesaiz dɛn we nɔ bad fɔ yu fɔ du.
• Slip inof ɛn tek kia ɔf yu maynd wɛl bɔdi: Fɔ liv wit lupus kin mek yu strɛs sɔm tɛm. Fɔ slip fayn (7-9 awa fɔ big pɔsin) ɛn fɔ ridyus strɛs kin ɛp sɔm pipul dɛn fɔ avɔyd fɔ gɛt flawa. Saikɔlɔjis ɔ ɔda pɔsin we de advays yu bɔt mental wɛlbɔdi biznɛs kin ɛp yu fɔ no aw fɔ bia wit di prɔblɛm.

Ustɛm a fɔ go to dɔktɔ?

If yu gɛt ɛni nyu sik, ɔr if yu fil se yu sik de chenj, go to dɔktɔ wantɛm wantɛm. Ivin smɔl chenj na yu sayn kin impɔtant.

If yu fil se di tritmɛnt we yu de gi yu naw nɔ de kɔntrol yu lupus simptom dɛm, tɛl yu dɔktɔ . If yu de gɛt mɔ flawa ɔ if yu sik de wɔs, tɛl yu dɔktɔ. Yu dɔktɔ kin ɛp yu fɔ ajɔst yu tritmɛnt as nid de.

Insay imejensi, dat na, if yu gɛt sayn dɛn lɛk dis, go na ɔspitul wantɛm wantɛm ɔ kɔl 1990:

• If yu nɔ ebul fɔ blo.
• If bad bad pen de.
• If yu tink se yu de gɛt sayn dɛm fɔ hat atak.

Us kwɛstyɔn dɛn a fɔ aks mi dɔktɔ?

We yu go to dɔktɔ, i go fayn fɔ aks kwɛstyɔn dɛn lɛk dɛn wan ya:

• A gɛt lupus ɔ ɔda sik we a kin gɛt we i de fɛt insɛf?
• Us kayn mɛrɛsin a nid?
• Aw ɔltɛm a fɔ si yu (fɔl-ap apɔntin)?
• A go nid fɔ go to ɔda spɛshal pipul dɛn?
• Yu kin tɛl mi bɔt sɔpɔt grup ɔ ɔda mental wɛlbɔdi savis dɛm we kin ɛp mi?

Fɔ dɔn, wetin fɔ mɛmba (Take-Home Message) .

Lupus kin bi wan sik wae de mek yu fil bad ɛn de mek yu nɔr gɛt trɛnk sɔmtɛm. Fɔ liv wit pen, inflamɛns, ɛn diskɔmfɔt ɔlsay na yu bɔdi nɔr izi. Bɔt, nɔ fɔgɛt fɔ gladi fɔ yusɛf . Fɔ liv wit wan sik wae nɔr de dɔn na tranga woke, so yu fɔ gɛt fɔ no yu fɔ di tray we yu de tray fɔ kɔntrol yu sik dɛn ɛvride.

If yu tink se i go fayn fɔ tɔk to pɔrsin bɔt aw yu de tink ɛn fil, aks yu dɔktɔ bɔt mɛntɛl hεlth savis ɛn sɔpɔt grup dɛm.

Nɔ fred fɔ tɔk to yu dɔktɔ ɛn aks kwɛstyɔn. Ivin smɔl chenj na yu sik kin bi sayn fɔ se lupus de afɛkt yu difrɛn we. Mɛmba se if yu fil se sɔntin nɔ rayt wit yu bɔdi, na yu na di bɛst jɔj.