Syndrome y'IBIVUGO ni iki? Urashaka kumenya ibi nawe?

Ese wigeze wumva POEMS Syndrome? Iyi ni indwara idakunze kuvugwaho cyane. Ariko, ni ngombwa kuyimenyaho gato kuko ishobora kugira ingaruka ku mikorere myinshi y'umubiri wacu icyarimwe. Muri make, ni indwara igoye ifitanye isano n'amaraso yacu. Uyu munsi, turaganira ku ndwara ya POEMS Syndrome, ibimenyetso byayo, uburyo ipimwa, ndetse niba hari uburyo bwo kuyivura.

Mu by'ukuri, POEMS Syndrome ni iki?

Reka turebe icyo POEMS Syndrome ari cyo. Iyi ni indwara idakunze kugaragara mu maraso. Dufite ubwoko bw'uturemangingo tw'amaraso twitwa plasma cells mu mubiri wacu. Iyo POEMS syndrome ibaye, utu turemangingo tw'amaraso twigabanyamo kabiri kandi tukiyongera mu buryo budasanzwe, mu buryo budasubirwaho. Utu turemangingo tw'amaraso tudasanzwe dusohora poroteyine yihariye mu maraso yacu. Twitwa monoclonal protein, cyangwa M-protein mu magambo ahinnye. Noneho ushobora kwiyumvisha, sibyo? Iyo utwo turemangingo tw'amaraso tudasanzwe, M-protein, twiyongereye cyane mu maraso, bishobora kwangiza imitsi yacu n'ingingo z'imbere.

Izina POEMS rikomoka ku nyuguti za mbere z'ibimenyetso bitanu by'ingenzi by'iyi ndwara:

• P - Polyneuropathy: Ibi bivuga kwangirika kw'imitsi mu mubiri wose. Mu MIVUGO, uku kwangirika gushobora gutera ububabare cyangwa ibindi bintu bitameze neza (nk'uburibwe, gushya, nibindi) mu maguru yawe, amaboko, mu birenge no mu biganza.
• O - Organomegaly: Ibi bivuze ko ingingo z'imbere ziba nini cyane. Umuntu ufite POEMS ashobora kugira ingingo nini nk'umwijima, urwagashya, n'uturemangingo tw'amaraso.
• E - Endocrinepathy: Muri make, iki ni ikibazo cy'imisemburo. Muri POEMS, ingano y'imisemburo irekurwa n'uturemangingo tw'imisemburo ishobora kuba idasanzwe. Imisemburo imwe ishobora gusohoka ari myinshi cyangwa mu rugero ruto.
• M - Poroteyine ya Monoclonal (Poroteyine ya M): Iyi ni poroteyine yihariye yikusanyiriza mu maraso muri POEMS. Iyo ingirabuzimafatizo imwe ya plasma ikora kopi nyinshi (clones) zayo, buri ngirabuzimafatizo yongera iyi poroteyine ya M mu maraso. Amaherezo, ingano ya poroteyine ya M mu maraso iriyongera cyane.
• S - Impinduka z'uruhu: Abantu bafite IMIVUGO bashobora kugira impinduka zitandukanye z'uruhu, nko kwijima k'uruhu no kwiyongera k'uruhu.

Indwara ya POEMS izwi kandi nka osteosclerotic myeloma , Crow-Fukase syndrome , PEP syndrome , na Takatsuki syndrome .

Ni nde ushobora cyane kurwara indwara ya POEMS?

Indwara ya POEMS ni indwara idakunze kugaragara cyane. Yibasira abantu bake cyane ku isi. Ikunze kugaragara cyane ku bantu bari hagati y'imyaka 50 na 60. Ishobora kwibasira ibitsina byombi, ariko isa nkaho ikunze kwibasira abagabo.

Ni ibihe bimenyetso by'indwara ya POEMS?

Nkuko twabivuze mbere, inyuguti ziri mu izina rya POEMS zigaragaza bimwe mu bimenyetso by'ingenzi. Ni ukuvuga ko, Polyneuropathy, Organomegaly, Endocrinopathy, kwiyongera kwa poroteyine ya M, n'impinduka z'uruhu ari byo bimenyetso by'ingenzi. Hafi ya buri wese ufite POEMS afite polyneuropathy na M-proteine ​​iri hejuru. Ibindi bimenyetso bishobora gutandukana bitewe n'umuntu ku giti cye.

Ibimenyetso biterwa na polyneuropathy

Ibimenyetso biterwa n'iyi ndwara yangiritse mu mitsi ni byo bikunze kugaragara mu MIVUGO. Akenshi, ububabare bugaragara cyane mu maguru no mu birenge. Ariko rimwe na rimwe bushobora kugira ingaruka ku maboko no ku biganza. Dore uko ushobora kumva umeze iyo ufite iyi ndwara:

• Intege nke
• Gutera amenyo
• Gucika intege
• Kumva ko hari urushinge rwinshi cyangwa urushinge
• Kumva ubushyuhe

Organomegali - kwaguka kw'ingingo z'imbere

Uburyo bwo gufata amashusho bukorwa n'abaganga bushobora kumenya niba izi ngingo zaragutse:

• Umwijima (Umwijima - `(Hepatomegaly)`)
• Udusimba (Splenomegali)
• Ingirabuzimafatizo z'imitsi (Ingirabuzimafatizo z'imitsi - `(Ingirabuzimafatizo z'imitsi)`)

Endocrinepathy - ibibazo by'imisemburo

Ikibazo nyamukuru cy’imisemburo kizanwa n’ibiganiro ni ukugabanuka k’urugero rw’imisemburo y’igitsina. Iyi misemburo y’igitsina yitwa ``Testosterone``` mu bagabo na ``Estrogen``` mu bagore. Byongeye kandi, ushobora kubona ibimenyetso nka:

• Ibibazo byo kugenzura urugero rw'isukari mu maraso (urugero: diyabete)
• Ibibazo bya tiroyide (urugero: Hypothyroidism)
• Indwara ya Addison (Kubura ubushobozi bwo gukora impyiko - `(Indwara ya Addison)`)

Abagabo bashobora kugabanuka k'uburumbuke no kwaguka kw'amabere (Gynecomastia).

Ku bagore , imihango ishobora guhagarara (`(Amenorrhea)`), amabere ashobora kwiyongera. Mu gihe cyo gutwita, imisemburo `(Prolactin)`, ifasha mu gutanga amashereka, ishobora gukorwa cyane. Kubwibyo, birashoboka ko amashereka ava mu mabere nubwo waba utari utwite.

Poroteyine ya M yiyongera

Ikintu cy'ingenzi cya POEMS ni urugero rwinshi rwa poroteyine ya M mu maraso. Uku kwiyongera kwa poroteyine ya M bishobora gutuma habaho ibibyimba mu maraso. Nanone, bitewe n'urugero rwinshi rwa poroteyine ya M,Amagufwa ashobora gukomera no gukomera (osteosclerosis) .

Impinduka z'uruhu

Impinduka zitandukanye z'uruhu zishobora kubaho, nko:

• Uruhu rwijimye
• Uruhu runini
• Inzara z'umweru
• Ubwiyongere bw'umusatsi mu maso no ku maguru
• Imitsi y'amaraso isa n'udukoko duto ku ruhu rw'igituza

Ibindi bimenyetso

Uretse ibi, hari n'ibindi bimenyetso bishobora kugaragara:

• Kubyimba amaboko n'ibirenge
• Kugabanya ibiro nta mpamvu
• Ububabare mu magufwa no mu ngingo
• Ubumuga bwo kutabona neza
• Guhumeka bigoranye
• Umunaniro
• Umuriro

Bamwe mu bantu barwaye indwara ya POEMS bashobora kuba bafite indwara yitwa Castleman Disease (CD), ifata imitsi yo mu bwonko. Niba ufite ibimenyetso bya Castleman Disease, muganga wawe ashobora no gukeka ko ari POEMS.

Ni iki gitera indwara ya POEMS?

Iyo ufite POEMS, uhura n'ibimenyetso bitandukanye n'ingaruka ziterwa n'indwara y'uturemangingo twa plasma twa monoclonal . Muri make, uturemangingo twa plasma tudasanzwe twikora kopi nyinshi cyane. Uko utwo turemangingo tuba twinshi, niko dushobora kwangiza ingirangingo. Utwo turemangingo twongera poroteyine ya M mu maraso, bigatuma ingano ya poroteyine ya M mu maraso yiyongera. Utwo turemangingo na poroteyine ya M ni byo byangiza sisitemu zitandukanye mu mubiri.

Ariko, abahanga mu bya siyansi ntibaramenya neza impamvu izi selile za plasma zitangira gukura mu buryo budasanzwe.

Abashakashatsi bavumbuye ko poroteyine yitwa Vascular Endothelial Growth Factor (VEGF) ishobora kuba irimo. Abantu benshi barwaye POEMS syndrome bafite urugero rwo hejuru rwa VEGF mu maraso yabo. Ubushakashatsi ku mibanire iri hagati ya VEGF na POEMS syndrome buracyakomeje.

Indwara ya POEMS ipimwa ite? (Isuzuma)

Muganga wawe azabanza kukubaza amateka y'ubuzima bwawe n'ibimenyetso by'ubuzima bwawe. Hanyuma, azagukorera isuzuma ry'umubiri kugira ngo arebe ibimenyetso bya POEMS syndrome.

Byongeye kandi, muganga ashobora kandi gukora ibizamini byinshi, nko:

• Ibipimo by'amaraso n'inkari: Ibi bizamini bishobora gufasha gusuzuma urugero rwinshi rwa poroteyine ya M cyangwa VEGF mu maraso cyangwa mu nkari zawe. Bishobora kandi gusuzuma umubare udasanzwe w'uturemangingo tw'amaraso cyangwa uturemangingo tw'amaraso tugaragara nk'utudasanzwe. Ibi bishobora kuba ibimenyetso by'IMIVUGO.
• Ibizamini byo gupima: Ibizamini nka X-ray na CT scan bishobora kwerekana niba amagufwa yawe afite ubugari cyangwa akomeye. Izi mpinduka zishobora kubaho iyo urugero rwa M-protein ruri hejuru.
• Isuzuma ry'umusemburo w'amagufwa: Ibi bishobora kumenya niba ufite uturemangingo tw'amaraso tugaragara nabi mu musemburo w'amagufwa yawe, cyangwa niba umubare w'uturemangingo tw'amaraso ari mwinshi cyane.
• Electromyogram (EMG): EMG ni ikizamini gipima imikorere y'imitsi. Gishobora gufasha muganga wawe gusuzuma polyneuropathy.

Bitewe n'ibimenyetso byawe, muganga wawe ashobora kandi gukora ibindi bizamini, nko gupima umwuka uhumeka, gupima umutima, cyangwa gupima imikorere y'amaraso.

Niba warafashwe n'indwara yitwa Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) , muganga wawe ashobora no kugupima kugira ngo arebe niba ufite POEMS syndrome.

Ni gute indwara ya POEMS ivurwa cyangwa ivurwa?

Nta muti uhari wa POEMS syndrome. Ariko, uburyo bwo kuvura bushobora gufasha mu kugenzura no gucunga ibimenyetso. Ubu buryo bwo kuvura bushobora kuba burimo:

• Kuvura imirasire: Ibi bikubiyemo kuyobora urugero rwo hejuru rw'imirasire ku turemangingo tw'amaraso tudasanzwe kugira ngo tubice.
• Ubwivumbure: Imiti irwanya kanseri, izwi kandi nka "Chimiotherapy," ikoreshwa mu kwica cyangwa kugabanya umuvuduko w'ikura ry'uturemangingo tw'amaraso tudasanzwe. Ubwivumbure ku ndwara ya POEMS busa n'ubuvuzi bwa myeloma nyinshi. Ubu buryo bwo kuvura burakora cyane kandi akenshi ntibutera ingaruka mbi zikomeye.
• Gutera uturemangingo tw’umubiri mu buryo bwa Autologous: Ubu buryo busimbuza uturemangingo tw’amaraso tudasanzwe hamwe n’uturemangingo tw’umubiri tuzima. Uturemangingo tw’umubiri ni uturemangingo dukura mu mubiri wawe tumeze nk’uturemangingo tw’amaraso. Muri ubu buryo, muganga wawe abanza gukura uturemangingo tw’umubiri tuzima mu mubiri wawe. Hanyuma, bakoresha imiti ya chimiotherapie cyangwa imirasire kugira ngo basenye uturemangingo tw’amaraso tudasanzwe. Nyuma yo kuvurwa, uturemangingo tw’umubiri dukuweho twongera gushyirwa mu mubiri wawe. Hanyuma dukura tukaba uturemangingo tw’amaraso tuzima.
• Ubuvuzi bw'umubiri: Niba ufite ingorane zo kugenda bitewe n'indwara ya polyneuropathy, ubu buvuzi bushobora kugufasha.

Byongeye kandi, muganga ashobora kuguha imiti nka steroide zo kugabanya ibimenyetso ndetse n'imiti igabanya ububabare (ibinini by'amazi) kugira ngo igabanye kubyimba.

Ni izihe ngorane zijyanye na syndrome ya POEMS?

Mu gihe cy’indwara ya POEMS, kwangirika kw’imitsi no gucika intege bishobora kwiyongera uko igihe kigenda. Bishobora kandi gutuma bigorana kugenda. Iyo amazi menshi yirundanyije hafi y’ibihaha cyangwa imbere mu gituza, bishobora gutera ububabare mu gituza no kugorwa no guhumeka.

Ariko ibuka,Ubuvuzi bwiza bushobora guhagarika cyangwa kugabanya kwangirika kw'imitsi. Bishobora kandi gufasha kugabanya ibindi bimenyetso. Ndetse n'ibyangiritse by'imitsi bishobora gukira buhoro buhoro uko igihe kigenda gihita.

Ese hari ibintu bishobora gutera indwara ya POEMS?

Kugeza ubu nta bintu byagaragaye bishobora gutera indwara ya POEMS.

Ese indwara ya POEMS ishobora kwirindwa?

Ikibabaje ni uko indwara ya POEMS idashoboka kwirindwa.

Ni iki giteganyijwe ku bantu bafite indwara ya POEMS?

Ubuzima bwawe bushingira ku bintu byinshi, harimo ibice by'umubiri wawe byibasiwe, uburyo indwara imenyekana vuba n'uburyo itangira kuvurwa, ndetse n'uburyo witabira kuvurwa.

Ni ngombwa kwivuza POEMS. Indwara ya POEMS ishobora gushyira ubuzima mu kaga iyo itavuwe. Ku rundi ruhande, uburyo bwiza bwo kuvura bwangiza uturemangingo tw’amaraso tudasanzwe bushobora kugufasha kuramba. Byongeye kandi, uburyo bwo kuvura bushobora kugabanya ibimenyetso no kunoza ubuzima bwawe.

Igipimo cy’ubuzima bw’abantu benshi bafite POEMS ni imyaka 14. Ibyo bivuze ko hafi kimwe cya kabiri cy’abantu babaho munsi y’imyaka 14, mu gihe ikindi gice kibaho igihe kirekire. Imyaka yawe yo kubaho iterwa n’uko wahuye n’indwara runaka n’uburyo wivuza.

Baza muganga wawe ibyerekeye ahazaza hawe nk'umuntu ubana n'indwara ya POEMS.

Ni ryari wagombye kujya kwa muganga ku bijyanye n'indwara ya POEMS?

Niba ubonye ibimenyetso bifitanye isano na POEMS syndrome, cyane cyane intege nke mu maboko no mu maguru , hita ubonana na muganga.

Ni ibihe bibazo ngomba kubaza muganga wanjye ku bijyanye n'indwara ya POEMS?

Ushobora kubaza ibibazo nk'ibi:

• Indwara yanjye ikomeye gute?
• Ni ubuhe buryo bwo kuvura mfite?
• Ni iki nakora kugira ngo ngire ingaruka mbi cyangwa ngo nzirinde?
• Ni izihe serivisi z'ubufasha ziboneka kuri njye?
• Ese ngomba kubonana n'umuganga w'inzobere mu kuvura indwara z'uturemangingo tw'amaraso kugira ngo ampe uburyo bwo kuvura?

Ni ryari nshobora gusubira mu bikorwa byanjye bisanzwe niba mfite POEMS syndrome?

Indwara ya POEMS ishobora kugira ingaruka ku bushobozi bwawe bwo gukora imirimo yawe ya buri munsi. Muganga wawe azagusobanurira uburyo iyi ndwara izagira ingaruka ku buzima bwawe bwa buri munsi.

Ese indwara ya POEMS ni indwara y’ubwiyongere bw’umubiri?

POEMS ni indwara iterwa n'ubwoba bw'imitsi.Si indwara iterwa n’ubwiyongere bw’umubiri. Paraneoplastic syndrome ni uruhurirane rw’ibimenyetso biterwa n’indwara runaka. Muri POEMS, ikibazo nyamukuru ni uko uturemangingo tw’amaraso tudasanzwe dukora poroteyine ya M nyinshi mu maraso (indwara y’uturemangingo tw’amaraso twa monoclonal). Ibimenyetso bya POEMS biterwa n’uturemangingo tw’amaraso tudasanzwe na poroteyine ya M byangiza ingirabuzima fatizo z’umubiri.

Ese indwara ya POEMS ni imwe na myeloma nyinshi?

Myeloma nyinshi ni kanseri yibasira uturemangingo twa plasma. POEMS syndrome ni uruhurirane rw'ibimenyetso biterwa n'uturemangingo tudasanzwe twa plasma hamwe n'ubwiyongere bwa poroteyine ya M. Igipimo cyo kubaho kwa POEMS syndrome kiri hejuru kuruta igihe cyo kubaho kwa myeloma nyinshi.

Ariko, imiti ya chimiotherapie ya POEMS na multiple myeloma ikunze gusa. Bimwe mu bimenyetso nabyo bishobora kuba bisa.

Indwara ya POEMS ni indwara igoranye cyane. Bishobora gufata igihe kinini muganga wawe kugira ngo amenye ko ibimenyetso byawe biterwa na POEMS syndrome atari indi ndwara. Umaze kubimenya, korana bya hafi n'itsinda ry'abaganga kugira ngo umenye uburyo bwo kuvura buzagufasha cyane mu kugabanya ibimenyetso byawe. Baza muganga wawe ibyerekeye imiryango cyangwa amatsinda y'ubufasha afasha abantu ku giti cyabo n'imiryango ihangana n'indwara nka POEMS syndrome.

Ubutumwa bwo kujyana mu rugo

Sawa, twavuze cyane kuri POEMS Syndrome uyu munsi. Ikintu cy'ingenzi ni ukumenya ko iyi ari indwara idasanzwe, ariko ikomeye . Ishobora kugira ingaruka ku miterere myinshi y'umubiri wacu.

• Izina POEMS rikomoka ku nyuguti za mbere z'amazina y'Icyongereza y'ibimenyetso bitanu by'ingenzi (indwara z'imitsi, kwaguka kw'ingingo z'imbere, ibibazo by'imisemburo, kwiyongera kwa poroteyine ya M, n'impinduka z'uruhu).
• Impamvu nyamukuru ibitera ni uturemangingo tw’amaraso tudasanzwe hamwe na poroteyine ya M zikora.
• Nubwo nta muti wuzuye uhari, hari uburyo bwiza bwo kuvura ibimenyetso no kunoza ubuzima.
• Ni ingenzi cyane gusuzuma indwara no gutangira kuyivura hakiri kare .

Niba ufite kimwe muri ibi bimenyetso, nyamuneka shaka inama kwa muganga. Ntugatinye, ukoresheje amakuru akwiye n'ubufasha bw'abaganga, ushobora guhangana n'iki kibazo.

` POEMS syndrome, indwara z'amaraso, kwangirika kw'imitsi, ibibazo by'imisemburo, poroteyine ya M, impinduka z'uruhu, uturemangingo tw'amaraso