Sézary Syndrome ni iki? Igira ingaruka zite ku ruhu rwawe?

Ese wigeze ubona ko uruhu rwawe ruhinduka umutuku mu buryo butunguranye, rukarya cyane, kandi rukajima ahantu hamwe na hamwe? Ushobora gutekereza ko ari indwara isanzwe y'uruhu, ariko mu bihe bidasanzwe, ishobora kuba ikintu gikomeye kurushaho. Ibyo ni byo tuvuga uyu munsi, Sézary Syndrome, kanseri idakunze kugaragara yibasira uruhu, amaraso, n'uturemangingo tw'imitsi. Ushobora kuba warayobewe gato izina, ariko ni ngombwa kubimenya.

Indwara ya Sézary ni iki?

Muri make, Sézary Syndrome ni ubwoko bwa kanseri y'uruhu ikunze kugaragara cyane kandi ikwirakwira vuba. Mu buvuzi, iri mu itsinda rya kanseri yitwa cutaneous T-cell lymphoma. T-lymphocytes, cyangwa T-cells mu magambo ahinnye, ni ubwoko bw'ingenzi bw'uturemangingo mu budahangarwa bw'umubiri wacu. Muri iyi ndwara, ubwoko bw'uturemangingo twitwa T-cells burahinduka kanseri kandi bukirunda mu ruhu rwawe, mu maraso no mu duce tw'imitsi.

Tekereza nk'abasirikare barinda umubiri wacu, izi `(T-cells)`. Ariko iyo aba basirikare bayobye bagatangira kuturwanya, ni ko biba. Niyo mpamvu uruhu rwawe ruhinduka ibara rugasa n'umutuku. Hari igihe uruhu narwo rushobora kwijima. Hari n'ahashobora kubaho ubushye bukomeye n'ibisebe bibabaza ndetse n'uduheri. Ikintu kibi kurushaho ni uko izi selile za kanseri mu maraso zishobora gukwirakwira mu bindi bice by'umubiri, ni ukuvuga mu ngingo z'imbere. Nubwo ubu nta muti wuzuye uhari, ntugahangayike , hari uburyo bwinshi bwo kuvura ibimenyetso no kuguha ubutabazi.

Iki kibazo gikunze kugaragara gute?

Mu by’ukuri ibi ni gake cyane. Ni ukuvuga ko ari indwara idakunze kugaragara. Tekereza, ndetse no mu gihugu nka Amerika, umuntu umwe gusa kuri miliyoni ni we uvugwaho kugira iyi ndwara buri mwaka. Rero iki si ikintu kigaragara kenshi muri Sri Lanka. Niyo mpamvu ari ngombwa kubimenya, kuko iyo ibimenyetso bigaragaye, bishobora kumenyekana vuba.

Ni ibihe bimenyetso bya Sézary Syndrome?

Ikimenyetso nyamukuru cy'iyi ndwara ni uduheri duto cyane (erythroderma) . Iyi si uburyaryate gusa, irakurura cyane, irababaza, rimwe na rimwe uruhu rurakura kandi rugakwirakwira vuba cyane. Kuri bamwe, cyane cyane abafite uruhu rwijimye, bishobora no kugaragara nk'utudomo twijimye (dushobora kuba imvi, umuhengeri, cyangwa umukara). Mu ntangiriro, ibi bimenyetso bishobora kugorana kubimenya kuko bisa n'indwara zisanzwe z'uruhu nka eczema cyangwa psoriasis. Abantu benshi batekereza ko iyi ari allergie yoroshye.

Uko indwara ya Sézary Syndrome ikomeza kwiyongera, uruhu rwawe ruzatangira kugira utubyimba duto, tuzamuka (papules). Hari ahantu hashobora kumvikana nk'aho hakomeye kandi hakomeye kurusha ahandi (plaque). Amaherezo, kanseri y'uruhu (ibibyimba) ishobora kugaragara. Hariho kandi n'ibindi bimenyetso bike, tuzareba:

• Utunyangingo tw’imitsi tubyimba - ahantu nko mu ijosi, mu kwaha no mu kibuno.
• Umuriro - Umuriro uza nta mpamvu.
• Umunaniro uhoraho - Kumva unaniwe uko waba usinziriye kose.
• Kugabanya ibiro mu buryo budasanzwe.
• Gutakaza umusatsi - Hari igihe amaso ndetse n'ubwoya bwo ku mubiri bushobora gutakaza.
• Ectropion (ijisho ryijimye).
• Kwaguka k'umwijima (hepatomegaly).
• Kubyimba (edema), cyane cyane mu maguru yo hasi.
• Kudakira ubukonje - Ibi bivuze ko wumva ubukonje kurusha abandi, ndetse no ku bushyuhe busanzwe bw'icyumba.

Ni iki gitera indwara ya Sézary Syndrome?

Ibi bibaho kubera ko uturemangingo tuzima twitwa T-cells mu mubiri wacu duhura n’impinduka mu miterere y’uturemangingo, tugahinduka uturemangingo tudasanzwe twa kanseri. Utwo turemangingo tudasanzwe twigabanyamo kabiri kandi tugwira mu buryo budasubirwaho, amaherezo tugakwirakwira ku ruhu, ku mitsi no mu maraso. Ni nk'urumamfu, rukwirakwira hose nta garuriro. Ariko, abahanga ntibaramenya neza icyatera izi mpinduka mu miterere y’uturemangingo. Ibyo bivuze ko bigoye kuvuga impamvu nyayo.

Ni ibihe bintu bishobora gutera ibi?

Nubwo umuntu wese ashobora kurwara iyi ndwara, hari ibintu bimwe na bimwe bishobora kongera ibyago byawe. Urugero, niba waranduye virusi ya T-cell leukemia (HTLV) y’abantu, ukekwaho kuba uri mu kaga gato ko kurwara Sézary syndrome. Ariko, ni ngombwa kwibuka ko atari abantu bose banduye iyi virusi bazarwara iyi ndwara.

Ni izihe ngorane zishobora guterwa n'iyi ndwara?

Sézary Syndrome ni indwara ishobora kugira ingaruka zikomeye ku mibereho y'umuntu. Tekereza nawe, ni gute wakwiyumva neza iyo uhora wikubira uruhu rwawe kandi ubabara? Ishobora gutera ibintu nko kubura ibitotsi, guhangayika buri gihe, no kwiheba. Hariho n'izindi ngorane nyinshi:

• Uturemangingo twa kanseri twa T dukwirakwira mu bihaha byawe, umwijima, urwagashya no mu musemburo w'amagufwa.
• Kwiyongera k'ibyago byo kurwara ubundi bwoko bwa lymphoma (kanseri yo mu maraso).
• Kwiyongera k'ibyago byo kwandura kenshi kubera ko urwego rw'uruhu rurinda rwangiritse, bigatuma mikorobe zinjira mu buryo bworoshye.

Ni gute abaganga basuzuma iyi ndwara?

Iyo ugiye kwa muganga, abanza kugusuzuma umubiri akakubaza ibimenyetso byawe. Azabaza kandi amateka yawe y'ubuzima. Muganga azabazaIyo akekwaho indwara ya Sézary Syndrome, ashobora gukora ibizamini byinshi, urugero:

• Ibipimo by'amaraso: Ibi ni ingenzi cyane. Ibi bishobora kuba birimo "Umubare wuzuye w'amaraso (CBC)" (ibi bireba ijanisha ry'ubwoko butandukanye bw'uturemangingo mu maraso, cyane cyane uturemangingo tw'umweru), "Umubare w'amaraso wa Sézary" (ureba umubare w'uturemangingo twa Sézary (uturemangingo twa kanseri tugaragara muri iyi ndwara) mu maraso, na "isuzuma ry'amaraso ryo mu gice cy'imbere" (isuzuma ry'amaraso rya mikorosikopi).
• Kureba uruhu, urugingo rwa lymph, cyangwa umwongo w'amagufwa: Muri ibi, agace gato k'urugingo gafatwa mu gace k'uruhu kagizweho ingaruka cyangwa ikibyimba maze koherezwa muri laboratwari. Aho ngaho, umuganga w'indwara asuzuma icyitegererezo cy'urugingo akoresheje mikorosikopi. Ibi bishobora gushakisha ibintu nk'ibimenyetso bya kanseri n'impinduka mu turemangingo.
• Ibizamini byo kureba niba kanseri yarakwirakwiriye: Niba ibipimo by'amaraso n'imitsi byemeza ko ufite Sézary syndrome, bizakorwa kugira ngo harebwe niba kanseri yarakwirakwiriye mu bindi bice by'umubiri. Ibi bishobora kuba birimo X-ray yo mu gituza, CT scan (computerized tomography), na Positron Emission Tomography (PET scan) (ireba imikorere y'uturemangingo mu mubiri).

Ni ubuhe buryo bwo kuvura indwara ya Sézary Syndrome?

Muganga wawe azagutanga imiti ijyanye n'ibimenyetso byawe n'aho kanseri yawe igeze (urugero yakwirakwiriyemo). Hari uburyo butandukanye bwo kuvura ibi. Si abantu bose bahabwa ubuvuzi bumwe.

• Fototherapie: Ubu buryo bukoresha ubwoko bwihariye bw'urumuri kugira ngo busenye uturemangingo twa kanseri mu ruhu. Uburyo bumwe bwitwa photopheresis iva hanze y'umubiri. Muri ubu buryo, uturemangingo tw'amaraso umweru dukurwa mu maraso yawe (leukapheresis), tugavurwa n'umuti hanyuma tugashyirwa ku rumuri rwa ultraviolet (urumuri rwa UV), hanyuma tugasubizwa mu mubiri wawe. Ubundi buryo, phototherapie ya UV ishobora gutangwa mu ruhu.
• Kuvura imirasire: Ibi bikubiyemo gukoresha imirasire ifite ingufu nyinshi mu gusenya uturemangingo twa kanseri. Ibi bishobora gukorwa hakoreshejwe imirasire yo hanze (gukoresha imashini mu gutanga imirasire) cyangwa imirasire y'uruhu yose (gukoresha imirasire y'uruhu yose).
• Chimiotherapie: Ibi bikubiyemo gutanga imiti yica uturemangingo twa kanseri. Hari ubwoko bukoreshwa ku ruhu (chemotherapy yo mu mutwe) n'ubwoko bukoreshwa mu mubiri wose (chemotherapy yo mu mubiri) (bwaba butangwa nk'ibinini cyangwa nk'urushinge). Vorinostat (Zolinza®) ni urugero rw'umuti utangwa ku mubiri wose.
• Uburyo bwo kuvura hifashishijwe uburyo bwo kuvura: Ubu buryo bwo kuvura bwibasira abantu bakunze kurwara kanseri gusa. Uburyo bwo kuvura antibody bwa monoclonal ni bumwe mu buryo bwo kuvura hifashishijwe uburyo bwo kuvura indwara ya Sézary.
• Ubudahangarwa bw'umubiri: Ibi bikubiyemo gukangura ubudahangarwa bw'umubiri wawe kugira ngo burwanye uturemangingo twa kanseri. Ibi bishobora gukorwa hakoreshejwe imiti nka Interferon (Intron A®, Intron A Multidose Pen.®)).
• Ubundi buryo bwo kuvura: Corticosteroids (imiti yo mu bwoko bwa steroid) n'amavuta yo mu bwoko bwa retinoid cyangwa gels (urugero: bexarotene (Targetin®)) nabyo bikoreshwa mu kugenzura ibimenyetso by'uruhu.

"Ariko ibuka ko ubu buryo bwose butari bumwe kuri buri wese. Muganga wawe ni we uzagena uburyo bwiza bwo kuvura indwara yawe. Azagusobanurira byose."

Ingaruka mbi z'ubuvuzi ni izihe?

Uburyo bwinshi bwo kuvura kanseri bugira ingaruka zimwe na zimwe. Ibi ni ibisanzwe. Ni ngombwa kubimenya mbere y'igihe. Muri rusange, `(chimiotherapie)` na `(radiation therapy)` ushobora kwitega ibintu nk'umunaniro, isesemi, kuruka, kubura ubushake bwo kurya, no gutakaza umusatsi. `(Phototherapy)` bishobora kugira ingaruka ku ruhu - rimwe na rimwe uruhu rwumye, gutukura. `(Targeted therapy)`, `(immunomodulators)` (imiti ihindura ubudahangarwa bw'umubiri) na `(immunotherapy)` rimwe na rimwe bishobora gutera kubyimba, impiswi, umunaniro, n'impinduka mu bice by'amaraso `(ibitagenda neza mu maraso)`. Ni byiza kuganira na muganga wawe kuri ibi kandi ukabimenya mbere y'igihe. Muri ubwo buryo, niba hari ikintu kibaye, ushobora kwizera ko utagomba guhangayika.

Ese ibi bishobora gukira burundu?

Iki ni cyo kibazo gikomeye ku bantu benshi. Ikibabaje ni uko nta muti wa Sézary Syndrome uhari. Ariko ibyo ntibivuze ko ugomba gutakaza icyizere . Hari uburyo bwinshi bwo kuvura bushobora gufasha mu kugenzura ibimenyetso, guhagarika uturemangingo tudasanzwe kwigabanya no gukura, no kugabanya ikwirakwira rya kanseri. Ubu buryo bwo kuvura bushobora kunoza ubuzima bwawe.

Iyi ndwara imara igihe kingana iki?

Sézary Syndrome ni indwara idakira. Ibi bivuze ko atari indwara iza ikagenda. Ushobora gukenera ubuvuzi n'ubugenzuzi bw'abaganga mu buzima bwawe bwose.

Amahirwe yo kurokoka ni ayahe?

Iki ni ikibazo gikomeye, kandi ntikigira ingaruka ku bantu bose kimwe. Dukurikije amakuru ariho ubu, abantu bagera kuri 24% barwaye Sézary Syndrome barokoka nibura imyaka itanu nyuma y’iyi ndwara. Ariko ibuka ko iki ari icyegeranyo rusange gishingiye ku byo abandi bahuye na byo. Buri wese aratandukanye. Ibi bishobora kuzagenda neza uko uburyo bushya bwo kuvura bugenda buboneka. Kubera ko Sézary Syndrome ari indwara idakunze kugaragara, biragoye gukusanya amakuru ahagije. Niba ufite ikibazo ku ndwara yawe, ni byiza kubaza muganga wawe. Ashobora gusobanura ukuri ku ndwara yawe.

Nitwara nte?

Kubana na Sézary Syndrome bivuze ko ugomba kwiyitaho by'umwihariko mu gihe urimo kuvurwa ubuzima bwawe bwose. Ushobora gukenera gufata ingamba zirambuye kugira ngo urinde uruhu rwawe.

• Ni ngombwa cyane kwirinda kwibasirwa n'izuba ryinshi . Uburyo bumwe na bumwe bwo kuvura bushobora gutuma uruhu rugira ikibazo cyo kwibasirwa n'izuba ryinshi.
• Kurikiza amabwiriza ya muganga neza. Fata umuti wawe ku gihe.
• Komeza uruhu rwawe rusukuye kandi ukoreshe amavuta yo kwisiga (nyuma yo kugisha inama muganga).
• Kurya indyo yuzuye.
• Gerageza kugira ibyishimo byo mu mutwe uko bishoboka kose.

Ni ryari ngomba kujya kwa muganga?

Ibimenyetso bya Sézary Syndrome bishobora guhinduka no kwiyongera vuba. Bityo rero, menya neza impinduka iyo ari yo yose mu mubiri wawe. Nubona kimwe muri ibi bikurikira, bwira muganga wawe ako kanya:

• Niba ubonye impinduka mu ruhu rwawe - gutukura cyangwa kwijima bikwirakwira ahantu henshi h'uruhu rwawe, uduheri duto turushaho kuba twinshi, cyangwa uduheri dushya tugaragara - ibi ni ibimenyetso byerekana ko indwara yawe ishobora kuba irushaho kuba mbi.
• Iyo urwaye indwara zikunze kugaragara kandi zigafata igihe kirekire kugira ngo zikire, iyo urwaye umuriro n'ububabare bw'umubiri kenshi.

Ni ibihe bibazo ugomba kubaza muganga?

Niba ufite Sézary Syndrome, ushobora kuba ufite ibibazo byinshi. Bizaba ingirakamaro kubiganiraho na muganga wawe. Ushobora kubaza muganga wawe ibibazo nk'ibi:

• Ni ubuhe buryo bwo kuvura bunkwiriye?
• Ni izihe ngaruka mbi nshobora kwitega muri ubu buryo bwo kuvura? Nabyitwaramo nte?
• Ese hari igeragezwa ry’ubuvuzi (ubushakashatsi ku buvuzi bushya) nshobora kwitabira?
• Ese kanseri ishobora kugaruka nyuma yo kuvurwa? Bite ho niba igarutse?
• Ni izihe mpinduka ngomba kugira mu mibereho yanjye?

Ni irihe tandukaniro riri hagati ya Mycosis Fungoides na Sézary Syndrome?

Ushobora kuba warigeze kumva aya mazina abiri mbere. Mycosis fungoides na yo ni ubwoko bwa lymphoma ya T-cell lymphoma y'uruhu ifata uruhu. Ni ukuvuga ko iri mu muryango umwe na Sézary syndrome. Itera kandi uduheri dutukura cyangwa twijimye ku ruhu. Ariko, itandukaniro rikomeye ni uko, bitandukanye na Sézary syndrome, abantu barwaye mycosis fungoides badafite uturemangingo twa kanseri (Sézary cells) twinshi mu maraso yabo. Ariko, rimwe na rimwe mycosis fungoides ishobora gukomera ikamera Sézary syndrome. Rero hari isano hagati y'ibyo byombi.

Amaherezo, ibintu byo kwibuka

Sézary Syndrome ni kanseri idakunze kugaragara, ikura vuba, ifata uruhu n'amaraso. Ishobora no gukwirakwira mu bindi bice by'umubiri. Mu ntangiriro, ibimenyetso bishobora kugaragara nk'indwara isanzwe y'uruhu nka eczema, ariko ibimenyetso bya Sézary Syndrome birushaho kwiyongera vuba kandi ntibishira byoroshye. Nubwo iyo ndwara idashobora gukira burundu, abaganga bashobora kuvura ibimenyetso byawe no gukumira indwara kuva ku ruhu no mu maraso ikagera mu bindi bice by'umubiri.

Kubwibyo, niba ubonye uruhu rwawe rudasanzwe, rudashira, rudakira, rutukura, cyangwa uruhu rwawe rugakomera, ni ngombwa kubonana na muganga, cyane cyane inzobere mu by'uruhu, vuba bishoboka. Uko rugaragara kare , ni ko ubuvuzi bushobora gutangira vuba. Bishobora kugira icyo bihindura ku buzima bwawe.

Sézary syndrome, kanseri y'uruhu, T-cell lymphoma, ibimenyetso by'uruhu, erythroderma, kuvura kanseri, kwishima k'uruhu