Wetin na di sik we dɛn kɔl Sézary Syndrome? Aw i kin afɛkt yu skin?

Yu dɔn ɛva notis se yu skin kin tɔn rɛd wantɛm wantɛm, i kin it bɔku, ɛn i kin dak na sɔm say dɛn? Yu kin tink se na jɔs wan kɔmɔn tin we kin apin to yu skin, bɔt i nɔ kin apin so ɔltɛm, i kin bi sɔntin we rili siriɔs. Na dat wi de tɔk bɔt tide, Sézary Syndrome, we na wan kansa we nɔ kin bɔku ɛn we kin afɛkt di skin, blɔd, ɛn limf no dɛm. Yu kin kɔnfyus smɔl wit di nem, bɔt i impɔtant fɔ no bɔt am.

Wetin na di sik we dɛn kɔl Sézary Syndrome?

Fɔ tɔk am simpul wan, Sézary Syndrome na wan kayn kansa na yu skin we nɔ kin bɔku ɛn we kin prɛd kwik kwik wan. Fɔ mɛn pipul dɛn, i de pan wan grup we gɛt kansa we dɛn kɔl cutaneous T-cell lymphoma. T-limfosayt dεm, כ T-sεl dεm fכ sכt, na imכtant kayn sεl dεm na wi bכdi in imyun sistεm. Insay dis sik, wan kayn sɛl we dɛn kɔl T-sɛl kin gɛt kansa ɛn i kin gɛda na yu skin, blɔd, ɛn limf no dɛm.

Tink bɔt am lɛk di sojaman dɛn we de protɛkt wi bɔdi, dɛn `(T-sɛl)` ya. Bɔt we dɛn sojaman ya go rɔng ɛn bigin fɔ wok agens wi, na dis kin apin. Dis na di rizin we mek yu skin kin chenj in kɔlɔ ɛn luk rɛd. Sɔntɛnde, di skin kin dak bak. I kin bi bak se yu kin it bad bad wan ɛn yu kin gɛt pen ɛn yu kin gɛt rash. Di tin we denja pas ɔl na dat, dɛn kansa sɛl ya we de na di blɔd kin go na ɔda pat dɛn na di bɔdi, dat na di ɔgan dɛn we de insay di bɔdi. Pan ɔl we naw nɔr gɛt kɔmplit mɛrɛsin fɔ dis, nɔr wɔri , bɔrku tritmɛnt de fɔ kɔntrol de sik ɛn gi yu rilif.

Aw kɔmɔn tin dis kin apin?

Dis na rili tin we nɔ kin apin so ɔltɛm. Dat min se na sik we pipul dɛn nɔ kin si so ɔltɛm. Imajin, ivin na kɔntri lɛk Amɛrika, na wan pan ɛvri milyɔn pipul dɛn nɔmɔ dɛn kin ripɔt se kin gɛt dis sik ɛvri ia. So dis nɔto sɔntin we dɛn kin si bɔku tɛm na Sri Lanka sɛf. Na dat mek i impɔtant fɔ no bɔt dis, bikɔs if di sik sho, dɛn kin no dɛn kwik kwik wan.

Wetin na di sayn dɛm wae de sho se yu gɛt Sézary Syndrome?

Di men sayn fɔ dis sik na wan difrɛn rɛd rash (erythroderma) . Dis nɔto jɔs simpul it, i kin it bad bad wan, i kin mek pɔsin fil pen, sɔm tɛm dɛn de di skin kin kɔmɔt ɛn i kin skata kwik kwik wan. Na sɔm pipul dɛn, mɔ di wan dɛn we gɛt dak skin, i kin tan lɛk dak spat bak (we kin bi grey, pepul, ɔ brawn). We di fɔs tɛm, i nɔ kin izi fɔ no dɛn sayn ya bikɔs dɛn kin tan lɛk di kɔmɔn tin dɛn we kin apin na di skin lɛk ɛkzema ɔ psoriasis. Bɔku pipul dɛn kin tink se dis na simpul alɛji.

As Sézary Syndrome de go bifo, yu skin go bigin fɔ gɛt smɔl smɔl bɔmp dɛn we rayz (papules). Sɔm say dɛn kin fil tik ɛn tayt pas ɔda wan dɛn (plek). As tɛm de go, kansa na di skin (tumors) kin kam. Sɔm ɔda sayn dɛn de bak, we wi go luk pan:

• di limf no dεm we swεla - na ples dεm lεk di nεk, di armpit dεm, εn di groin.
• Fiva - Fiva we kin kam pan pɔsin we nɔ gɛt rizin.
• Kɔnstant taya - Na filin fɔ taya ilɛksɛf yu gɛt bɔku slip.
• We yu de lɔs yu wet we yu nɔ ɛksplen.
• I kin lɔs - Sɔntɛnde, aybrɔw ɛn ivin bɔdi ia kin lɔs.
• Ektropiɔn (aylid we dɛn dɔn invayt).
• Di liva we de mek di liva big (hepatomegaly).
• Swɛlin (ɛdima), mɔ na di ɔda leg dɛn we de dɔŋ.
• Kol intolerans - Dis min se yu kin fil kol pas ɔda pipul dɛm, ivin na nɔmal rum tɛmpracha.

Wetin kin mek pɔsin gɛt Sézary Syndrome?

dis kin apin biכs di hεlty sεl dεm we dεn kכl T-sεl dεm na wi bכdi kin gεt jεnεtik mכtεshכn, we kin tכn dεm to abnכmal kεnsar sεl dεm. Dɛn nɔmal sɛl dɛn ya kin sheb kwik kwik wan ɛn dɛn kin bɔku we dɛn nɔ kin ebul fɔ kɔntrol dɛnsɛf, ɛn leta dɛn kin go na di skin, di limf no dɛn, ɛn di blɔd. I tan lɛk gras, we de skata ɔlsay we i nɔ ebul fɔ kɔntrol am. Bɔt masta sabi bukman dɛn stil nɔ no bɛtɛ bɛtɛ wan wetin kin mek dɛn chenj dɛn ya na di jɛnɛtiks. Dat min se i at fɔ tɔk klia wan wetin mek.

Wetin na di risk factor dɛm fɔ dis?

Pan ɔl we ɛnibɔdi kin gɛt dis sik, sɔm tin dɛn kin mek yu gɛt mɔ prɔblɛm. Fɔ ɛgzampul, if yu dɔn gɛt di human T-cell leukemia virus (HTLV), dɛn kin tink se yu go gɛt Sézary syndrome smɔl. Bɔt i impɔtant fɔ mɛmba se nɔto ɔlman we gɛt dis vayrɔs go gɛt dis sik.

Wetin na de prɔblɛm wae kin kam wit dis sik?

Sézary Syndrome na wan sik wae kin afɛkt di kwaliti fɔ layf bad bad wan. Imajin, aw yu go fil fayn we yu de skrach yu skin ɔltɛm ɛn yu de fil pen? E kin mek yu gɛt tin lɛk wae yu nɔr de slip fayn, yu de wɔri ɔltɛm, ɛn yu at pwɛl. Bɔku ɔda prɔblɛm dɛn de bak:

• T-sεl dεm we gεt kansa kin spre to yu lכng, liva, splin, εn bon mכro.
• di risk fכ divεlכp כda kayn limfoma (kansa na di limfatik sistεm) de inkrεs.
• Di risk fɔ gɛt infɛkshɔn ɔltɛm bikɔs di layt we de protɛkt di skin dɔn pwɛl, we de mek di jem dɛn go insay izi wan.

Aw dɔktɔ dɛn kin no bɔt dis sik?

We yu go to dɔktɔ, i go fɔs du yu bɔdi ɛgzam ɛn aks yu bɔt di sik dɛn we yu gɛt. I go aks bak bɔt yu past mɛdikal histri. Di dɔktɔ go du amIf dɛn tink se i gɛt Sézary Syndrome, i kin du bɔku tɛst dɛn, lɛk:

• Blɔd tɛst: Dis rili impɔtant. dis kin inklud ``Kכmplit Blכd Kכnt (CBC)`` (dis de chεk di pasεnshכn fכ difrεn tכp sεl dεm na di bכdi, spεshal wan wayt blכd sεl dεm), wan ``Sézary bכdi kכnt`` (we de chεk di nכmba fכ ``Sézary sεl dεm`` (kansa sεl dεm we tipik fכ dis sik) na di bכdi), εn wan ``pεrifεral blכd smεr`` (wan maykroskכpik egzamin fכ wan blכd sεmpl).
• Skin, limf node, ɔ bon mɛro bayɔpsi: Insay dis, dɛn kin tek wan smɔl pat pan di tisu frɔm wan say we di skin afɛkt ɔ wan lump ɛn sɛn am na lɛbɔtri. Na de, wan dɔktɔ we de mɛn sik dɛn kin chɛk di tisu sɛmpul ɔnda maykroskɔp. dis kin luk fכ tin dεm lεk tכmכro mak dεm εn chenj dεm na di sεl dεm.
• Test fɔ si if di kansa dɔn skata: If blɔd ɛn tisu tɛst kɔnfirm se yu gɛt Sézary syndrome, dɛn go du tɛst fɔ si if di kansa dɔn spre to ɔda pat dɛn na yu bɔdi. Dɛn tin ya kin bi fɔ tek ɛkstrem rayt na di chɛst, CT skan (kɔmpyuta tomografi), ɛn Positron Emission Tomography (PET) skan (we de luk aw di sɛl dɛn na di bɔdi de wok).

Wetin na di tritmɛnt fɔ Sézary Syndrome?

Yu dɔktɔ go gi yu tritmɛnt bay di sayn dɛm we yu gɛt ɛn di stej we yu kansa gɛt (aw fa i dɔn skata). Difrɛn tritmɛnt dɛn de fɔ dis. Nɔto ɔlman kin gɛt di sem tritmɛnt.

• Fɔtotɛrapi: Dis kin yuz spɛshal kayn layt fɔ pwɛl di kansa sɛl dɛn na di skin. Wan we aw dɛn kin du am na in dɛn kɔl ɛkstrakɔpɔrial fotofɛrɛsis. Insay dis, dɛn kin pul di wayt blɔd sɛl dɛn na yu blɔd (leukapheresis), dɛn kin trit dɛn wit wan mɛrɛsin ɛn put dɛn na ɔltra vayolɛt layt (UV layt), dɔn dɛn kin kam bak na yu bɔdi. Ɔda we de fɔ du dat, dɛn kin gi UV fototɛrapi dairekt to di skin.
• Radieshɔn tɛrapi: Dis kin min fɔ yuz rayt we gɛt bɔku ɛnaji fɔ pwɛl di kansa sɛl dɛn. dis kin bi bay we yu de yuz ekstenal rεdyushכn tεrapi (yuz mashin fכ gi di rayt) כ tכtal skin εlektrכn bim rεdyushכn tεrapi (tכtal skin εlektrכn bim rεdyushכn tεrapi).
• Kimotɛrapi: Dis kin min fɔ gi mɛrɛsin dɛn we de kil di kansa sɛl dɛn. di kayn dεm de we dεn kin put pan di skin (topical chemotherapy) εn di kayn dεm we de afekt di כl bכdi (systemic chemotherapy) (dεn kin gi am as pils כ as injεkshכn). Vorinostat (Zolinza®) na ɛgzampul fɔ wan mɛrɛsin we dɛn kin gi to di wan ol bɔdi.
• Targeted therapy: Dɛn tritmɛnt ya kin atak sɔm patikyula target dɛm we dɛn kin si pan kansa sɛl dɛm nɔmɔ. Monoclonal antibody therapy na wan pan dɛn kayn targeted therapy ya we dɛn kin yuz fɔ Sézary syndrome.
• Immunotherapy: Dis kin min fɔ mek yu bɔdi in yon imyun sistɛm ebul fɔ fɛt di kansa sɛl dɛn. Dis kin bi bay we yu yuz mεdikeshכn lεk Interferon (Intron A®, Intron A Multidose Pen.®)).
• Ɔda drɔg tritmɛnt dɛm: Dɛn kin yuz kɔtikosterɔyd (stɛroyd-tayp drɔgs) ɛn rɛtinoyd-tayp krim ɔ jel (e.g. bɛksarotin (Targretin®)) bak fɔ kɔntrol di simptom dɛm na di skin.

"Bɔt mɛmba se nɔto ɔl dɛn tritmɛnt ya na di sem fɔ ɔlman. Yu dɔktɔ go disayd di bɛst tritmɛnt fɔ yu kɔndishɔn. I go ɛksplen ɔltin to yu."

Wetin na di sayd ɛfɛkt dɛm we di tritmɛnt kin gɛt?

Bɔku pan di tritmɛnt dɛn we dɛn kin gi kansa kin gɛt sɔm bad bad tin dɛn. Dis na nɔmal tin. I impɔtant fɔ no dɛn bifo tɛm. In jɛnɛral, `(kemotherapy)` ɛn `(radiation therapy)` yu kin ɛkspɛkt tin dɛm lɛk taya, nɔs, vɔmit, nɔr kin want fɔ it, ɛn yu ia kin lɔs. `(Fototherapy)` kin afɛkt di skin - sɔmtɛm i kin dray di skin, i kin rɛd. `(Targeted therapy)`, `(immunomodulators)` (drɔg dɛm we de chenj di imyun sistɛm) ɛn `(immunotherapy)` kin mek sɔmtɛm blo, dayarɛa, taya, ɛn chenj na di blɔd komponent dɛm `(blɔd kɔnt abnɔmaliti)`. I fayn fɔ tɔk to yu dɔktɔ bɔt dis ɛn no bɔt am bifo tɛm. Da we de, if sɔntin apin, yu go shɔ se yu nɔ go fred.

Yu tink se dis kin mɛn kpatakpata?

Dis na di big prɔblɛm fɔ bɔku pipul dɛn. Bɔt i sɔri fɔ no se, no mɛrɛsin nɔ de fɔ mɛn di sik we dɛn kɔl Sézary Syndrome. Bɔt dat nɔ min se yu fɔ lɛf fɔ gɛt op . Bɔku tritmɛnt dɛn de we kin ɛp fɔ kɔntrol di sayn dɛm, stɔp di nɔmal sɛl dɛm fɔ sheb ɛn gro, ɛn slo fɔ mek kansa skata. Dɛn tritmɛnt ya kin mek yu gɛt bɛtɛ layf.

Aw lɔng dis sik kin te?

Sézary Syndrome na wan sik wae nɔr de dɔn. Dis min se i nɔto sik we kin kam ɛn go. Yu kin nid sɔm kayn tritmɛnt ɛn mɛrɛsin fɔ di res ɔf yu layf.

Aw di chans dɛn we pɔsin kin gɛt fɔ sev?

Dis na sɛnsitiv tin, ɛn i nɔ kin afɛkt ɔlman di sem we. Akɔdin to di data wae de naw, lɛk 24% pan di pipul dɛm wae gɛt Sézary Syndrome kin liv fɔ at le fayv ia afta di sik. Bɔt mɛmba se dis na jɔs wan jɔnaral ɛstimat bay di ɛkspiriɛns dɛn we ɔda pipul dɛn gɛt. Ɔlman difrɛn. Dis tin kin bɛtɛ as nyu tritmɛnt dɛn we go wok fayn de kam. Bikɔs Sézary Syndrome na dis kayn sik wae nɔr kin bɔrku, e kin tranga fɔ gɛda inof infɔmeshɔn. If yu gɛt ɛni kwɛstyɔn bɔt yu sik, i go fayn fɔ aks yu dɔktɔ. I kin ɛksplen di tru tin bɔt yu sik.

Aw a kin kia fɔ misɛf?

Fɔ liv wit Sézary Syndrome min se yu nid fɔ tek kia ɔf yusɛf spɛshal wae yu de gɛt tritmɛnt fɔ ɔl yu layf. Yu kin nid fɔ du ɛkstra tin dɛn fɔ protɛkt yu skin.

• I rili impɔtant fɔ avɔyd fɔ de na di san dairekt wan . Sɔm tritmɛnt dɛn kin mek di skin fil bad we di san de shayn.
• Fɔ fala di dɔktɔ in instrɔkshɔn dɛn di rayt we. Tek yu mɛrɛsin di rayt tɛm.
• Kip yu skin klin ɛn yuz mɔstizayza (afta yu go to dɔktɔ).
• It tin dɛn we go mek yu gɛt wɛlbɔdi.
• Tray fɔ gɛt gladi at na yu maynd as yu ebul.

Ustɛm a fɔ go to dɔktɔ?

De sayn dɛm fɔ Sézary Syndrome kin chenj ɛn wɔs kwik kwik wan. So na fɔ no ɛni chenj we de apin na yu bɔdi. If yu notis ɛni wan pan dɛn tin ya, tɛl yu dɔktɔ wantɛm wantɛm:

• If yu notis chenj na yu skin - rεd ɔr dak de spre to mכr εria dεm na yu skin, sכm sכm bכmp dεm de big, כ nyu bכmp dεm de apia - dis na sayn dεm fכ se yu kכndyushכn kin de bכku.
• If yu gɛt infɛkshɔn ɔltɛm ɛn dɛn kin tek lɔng tɛm fɔ wɛl. If yu kin gɛt fiva ɔltɛm ɛn yu bɔdi kin at.

Us kwɛstyɔn dɛn yu fɔ aks di dɔktɔ?

If yu gɛt Sézary Syndrome, yu kin gɛt bɔku kwɛstyɔn dɛn. I go fayn fɔ tɔk bɔt dɛn wit yu dɔktɔ. Yu kin aks yu dɔktɔ kwɛstyɔn dɛn lɛk dɛn wan ya:

• Us tritmɛnt dɛn we bɛtɛ fɔ mi?
• Us sayd ɛfɛkt a kin ɛkspɛkt frɔm dɛn tritmɛnt ya? Aw a go dil wit dɛn?
• Ɛni klinik trial de (risach pan nyu tritmɛnt) we a kin tek pat pan?
• Yu tink se kansa kin kam bak afta dɛn dɔn trit am? Wetin fɔ du if i du dat?
• Us chenj dɛn a nid fɔ mek na mi layf?

Wetin na di difrɛns bitwin Mycosis Fungoides ɛn Sézary Syndrome?

Sɔntɛm yu go dɔn yɛri dɛn tu nem ya bifo. Mycosis fungoides na wan kayn kכtan T-sεl limfoma bak we de afekt di skin. Dat min se, i de na di sem famili wit Sézary syndrome. I kin mek bak di skin gɛt rɛd ɔ dak rash. Bɔt di men difrɛns na dat, nɔ lɛk Sézary syndrome, pipul dɛn we gɛt mycosis fungoides nɔ gɛt bɔku bɔku kansa sɛl dɛn (Sézary cells) we de rɔn na dɛn blɔd. כltu, sכmtεm di mycosis fungoides kin bi siriכs εn divεlכp to Sézary syndrome. So kɔnekshɔn de bitwin dɛn tu.

Fɔ dɔn, tin dɛn we wi fɔ mɛmba

Sézary Syndrome na wan kansa wae nɔr kin bɔrku, wae kin gro kwik kwik wan, wae kin afɛkt di skin ɛn blɔd. I kin go bak to ɔda pat dɛn na di bɔdi. Fɔs, di sayn dɛm kin tan lɛk kɔmɔn skin kɔndishɔn lɛk ɛkzema, bɔt di sayn dɛm fɔ Sézary Syndrome kin wɔs kwik ɛn nɔr kin go izi. Pan ɔl we dɛn nɔ go ebul fɔ mɛn dis sik ɔl, dɔktɔ dɛn kin trit yu sik dɛn ɛn mek di sik nɔ go kɔmɔt na yu skin ɛn blɔd to ɔda pat dɛn.

So, if yu notis ɛnitin we nɔ kɔmɔn, we de kɔntinyu fɔ it, we de it bad bad wan, we de rɛd, we de dak, ɔ we de tik na yu skin, i impɔtant fɔ go to dɔktɔ, mɔ to dɔktɔ we de mɛn yu skin kwik kwik wan. Di kwik we dɛn no am, na di mɔ dɛn kin bigin fɔ trit am kwik kwik wan. I kin mek big chenj na yu layf.

` Sézary syndrome, skin kansa, T-cell lymphoma, skin simptom, erythroderma, kansa tritmɛnt, skin it