Ese ukunze kugira ububabare budasanzwe ku mubiri wawe? Reka twige byinshi kuri iyi '(Systemic Mastocytosis)'!

Ese hari igihe ujya ugira ibibara bitukura kandi biryana ku ruhu rwawe? Cyangwa ufite ububabare bwo mu nda n'umutwe bihita bishira? Ibi bintu nibibaho kenshi, bishobora kuba indwara idakunze kugaragara yitwa "Systemic Mastocytosis" tugiye kuvugaho uyu munsi. Ntugahangayike, iyi si indwara yibasira abantu benshi. Ariko ni ngombwa kubimenya.

None se, iyi "Systemic Mastocytosis" ni iki?

Mu magambo make, `(Systemic Mastocytosis)` ni indwara idakunze kugaragara ifitanye isano n'amaraso yacu. Ikibaho muri ibi ni uko ubwoko bwihariye bw'ingirabuzimafatizo bwitwa `(Mast cells)` mu mubiri wacu bukura mu buryo budasanzwe. Tekereza nawe, izi ngirabuzimafatizo za mast zimeze nk'abasirikare bato mu mubiri wacu. Ni zo, nk'igice cy'ubudahangarwa bwacu bw'umubiri, zimenya kandi zirwanya abajura b'abanyamahanga (nk'udukoko, ibintu bitera allergie, nibindi). Iyo umuntu nk'uwo aje, izi ngirabuzimafatizo za mast zirekura imiti nka `(Histamine)`. Iyi `(Histamine)` ni yo itera ibyo bimenyetso bya allergie (nk'umutuku, kuribwa, kubyimba). Ubusanzwe, uturemangingo twa mast duhagarika kurekura iyi `(Histamine)` iyo akazi karangiye. Ariko, mu mubiri w'umuntu ufite `(Systemic Mastocytosis)`, uturemangingo twa mast dukura cyane kandi tukarekura `(Histamine)` buri gihe. Ni nk'aho umuntu yasize robine y'amazi hanyuma akibagirwa kuyizimya. Niyo mpamvu dukomeza kugira ibimenyetso bisa n'ibya allergie. Bishobora kugira ingaruka ku ruhu rwacu gusa, ahubwo no ku ngingo zacu z'imbere nk'umwijima, urwagashya, n'amara. Iyi ndwara, yitwa "Systemic Mastocytosis," bivugwa ko yibasira abantu 13 gusa muri buri 100.000 ku isi. Ibyo bivuze ko ari gake cyane. Ariko, abantu bafite iyi ndwara baba bafite ibyago byinshi byo kurwara anaphylaxis ( allergie ikomeye, itunguranye, ishobora no gushyira ubuzima mu kaga). Gake cyane, "Systemic Mastocytosis" ishobora no guhinduka kanseri. Abaganga ntibashobora gukiza iyi ndwara burundu. Ariko, hari uburyo bwo kuvura bushobora kugufasha kugenzura ibimenyetso byawe no kubaho ubuzima busanzwe.

Ni ubuhe bwoko bw'ingenzi bwa `(Systemic Mastocytosis)`?

Hari ubwoko butandatu bw'ingenzi bwa "Systemic Mastocytosis". Bugira ingaruka ku buryo butandukanye. Muri rusange, uko urushaho kugira uturemangingo tw’umusatsi mu mubiri wawe, niko urushaho kugira ibibazo. Reka turebe ubwo bwoko: 1. Ubwoko bukura buhoro buhoro (``Indolent systemic mastocytosis``):

• Ubu ni bwo bwoko bukunze kugaragara cyane. Kimwe n'igiti gikura buhoro buhoro, bishobora gufata imyaka myinshi kugira ngo ibimenyetso bigaragare. Umubare w'uturemangingo tudasanzwe tw'umugongo wiyongera uko igihe kigenda gihita. Ibi bishobora gutera ibimenyetso mu ruhu, umwijima , urwagashya , no mu nda (ni ukuvuga mu mara).

2. Ubwoko buteye imbere gato (`Mastocytosis ishyuha mu buryo bw'umubiri`):

• Muri ubu bwoko, uturemangingo tw’umusemburo tudasanzwe twikusanyiriza hamwe mu mwijima no mu musemburo. Uko igihe kigenda gihita, ibi bishobora gutuma umwijima cyangwa umusemburo bibyimba. Tekereza nk'uko bigenda iyo inzu nto yuzuye abantu benshi.

3. Ubwoko buza hamwe n'izindi ndwara z'amaraso (`Systemic mastocytosis hamwe na hematologic neoplasm`):

• Abantu bafite ubu bwoko bashobora kurwara izindi ndwara zifitanye isano n'amaraso, nka myeloproliferative neoplasms na myelodysplastic syndrome . Ubu bwoko bw'indwara bufata umuntu umwe kuri batanu bafite Systemic Mastocytosis.

4. Ubwoko bukomeye (`Mastocytosis y'umubiri ikaze`):

• Ibi ni bibi cyane kuko bishobora kugira ingaruka ku musokoro w'amagufwa (aho uturemangingo tw'amaraso dukorerwa) no ku magufwa. Uturemangingo tw'umusatsi tudasanzwe dushobora gukura imbere mu magufwa, tukayaca intege kandi bigatuma avunika byoroshye.

5. Ubwoko buhinduka kanseri y'amaraso (`Mast cell leukemia`):

• Ni gake cyane, indwara ya Systemic Mastocytosis ishobora kuvamo indwara yitwa Mast Cell Leukemia . Iyi ni ubwoko bwa Acute Myeloid Leukemia (AML) .

6. Ubwoko bwa kanseri (`Mast cell sarcoma`):

• Iki ni cyo gihe ibibyimba (utubyimba) bikomoka ku turemangingo tudasanzwe twangiza ingingo zitandukanye mu mubiri. Umubare muto cyane w'abantu bafite "Systemic Mastocytosis" barwara iyi ndwara yitwa "Mast cell sarcoma".

Ni ibihe bimenyetso by'iyi ndwara (Systemic Mastocytosis)?

Ibimenyetso bishobora gutandukana bitewe n'umuntu ku giti cye. Biterwa n'aho mu mubiri uturemangingo tudasanzwe tw’umusatsi tuba twinshi cyane. Urugero, niba ufite uturemangingo twinshi tw’umusatsi mu nda yawe, ushobora kugira ibisebe no kubabara mu gifu. Nanone, iyo uturemangingo tw’umusatsi twikusanyije mu musokoro w’amagufwa yawe, bishobora kugira ingaruka ku ikorwa ry’uturemangingo tw’amaraso. Dore bimwe mu bimenyetso bikunze kugaragara:

• Anemia ( kubura amaraso )
• Kubabara amagufwa
• Kuva amaraso menshi cyane (urugero, amaraso menshi ava mu gikomere gito)
• Kumva unaniwe igihe cyose (` Umunaniro` )
• Uruhu rwaseye
• Umutima utera cyane
• Uduheri ( uduheri duto cyane ku ruhu)
• Uruhu ruryana
• Ihindagurika ry'amarangamutima cyangwa kwihebaihungabana `)
• Uduheri twijimye kandi turyana ku ruhu (`Urticaria pigmentosa`)

Hari igihe abantu bafite indwara ya Systemic Mastocytosis bashobora kugaragaraho ibimenyetso byinshi icyarimwe. Abaganga babyita "igitero cya mastocytosis" cyangwa "flare".

Icy'ingenzi: Si buri wese ufite ibi bimenyetso ufite `(Systemic Mastocytosis).` Ariko, niba ufite bimwe muri ibi bimenyetso icyarimwe, kandi bigakomeza, ugomba kujya kwa muganga kugira ngo akugire inama.

Kuki iyi '(Systemic Mastocytosis)' ibaho?

Ubushakashatsi bwagaragaje ko abantu bagera kuri 80% bafite `(Systemic Mastocytosis)` bafite `KIT gene variant` . Iyi gene `KIT` ifasha ubwoko bumwe na bumwe bw'uturemangingo mu mubiri wacu, cyane cyane uturemangingo tw'amaraso n'uturemangingo twa mast, gukura. Iyi gene variant iba nyuma yo gusamwa mu nda. Ibi bivuze ko idakwiranye n'umurage.

Ni ibihe bintu byongera cyangwa bitera indwara (`Itera`)?

Hari ibintu byinshi bishobora gutera ibimenyetso bya "Systemic Mastocytosis." Si abantu bose bagerwaho n'ibintu bimwe. Ariko hari ibintu bike bikunze kugaragara:

• Inzoga
• Ibiryo biryoshye
• Imiti imwe n'imwe: Urugero , imiti igabanya ububabare ( NSAIDs ), imiti igabanya imitsi, n'imiti igabanya ububabare.
• Imyitozo ngororamubiri n'imyitozo ngororamubiri ( kuri bamwe gusa)
• Udukoko dutera kurumwa (cyane cyane inseko, ivubi, n'inzuki)
• Imihangayiko y'umubiri cyangwa iy'amarangamutima
• Gusiga cyangwa gukurura uruhu rwawe
• Impinduka zitunguranye mu bushyuhe (urugero, gusimbuka mu mazi akonje mu buryo butunguranye)

Niba ufite iyi ndwara, ni ngombwa cyane kubaza muganga wawe intege nke zawe n'ibyo ugomba kwirinda.

Ni gute wasuzuma iyi ndwara neza? (Isuzuma)

Iyo ugiye kwa muganga, ikintu cya mbere bazakora ni ukugusuzuma umubiri. Bazakubaza ibimenyetso byawe n'indwara zose wagize mbere. Hanyuma, bashobora gukora kimwe cyangwa byinshi muri ibi bikurikira kugira ngo bamenye niba ufite indwara ya Mastocytosis yo mu mubiri:

• Ibipimo by'amaraso: Ibi bigenzura ingano ya tryptase mu maraso yawe. Tryptase ni enzyme yihariye irekurwa n'uturemangingo tw'amaraso iyo twitabiriye ibintu by'amahanga.
• Gupima amagufwa: Reba niba nta magufwa yangiritse.
• Bisipu y'umusemburo w'amagufwa: Ibi bikubiyemo gufata urugero ruto rw'umusemburo w'amagufwa yawe no kuwupima kugira ngo harebwe niba hari uturemangingo tw'umusemburo tudasanzwe turimo, n'ingano yatwo.
• Ibizamini bya genetike: Reba niba hari impinduka mu gene ya `KIT` yavuzwe haruguru.

Ivurwa ite?

Abaganga bavura indwara ya Systemic Mastocytosis bagenzura ibimenyetso n'ingorane. Urugero, niba ufite aside nyinshi mu gifu, bashobora kuguha imiti igabanya aside H2 (ubwoko bwa aside igabanya aside). Niba amaraso ari ingaruka z'iyi ndwara, izavurwa. Dore bumwe mu buryo bw'ingenzi bwo kuvura:

• Antihistamines: Igabanya ibimenyetso by'uruhu nko kuribwa no gutukura.
• Corticosteroids: Igabanya kubyimba no kubyimba mu mubiri.
• Bisphosphonates: Bifasha gukomeza amagufwa iyo afite intege nke.
• Uburyo bwo kuvura hifashishijwe ikoranabuhanga: Ibi bikubiyemo kwibanda kuri poroteyine runaka iboneka mu turemangingo tudasanzwe tw’umubiri.
• Chimiotherapie: Iyi ikoreshwa gusa iyo Systemic Mastocytosis yahindutse kanseri.
• Kubaga amenyo: Iyo amenyo yabyimbye cyane, ashobora kubagwa.
• Gutera umwongo w'amagufwa: Ibi bikorwa ku bantu bafite indwara zikomeye cyane, cyangwa abari mu cyiciro cya nyuma.

Ibuka: Niba ufite indwara ya Systemic Mastocytosis, ugomba guhora witwaje EpiPen . EpiPen ni umuti ushobora gukoreshwa ako kanya mu gihe habayeho allergie ikomeye, nka Anaphylaxis yavuzwe haruguru.

Ese iyi "Systemic Mastocytosis" ntishobora kwirindwa?

Nkuko twabiganiriyeho mbere, "Systemic Mastocytosis" iterwa n'impinduka mu ngirabuzimafatizo. Kubwibyo, ntabwo bishoboka kuyikumira. Ariko, ushobora kuyirwanya wirinde "ibintu bitera" byongera ibimenyetso.

Ni ubuhe buryo bw'ejo hazaza umuntu ufite `(Systemic Mastocytosis)` afite?

Ibi biterwa cyane n'ubwoko bwa `(Systemic Mastocytosis)` ufite. Abantu bafite ubwoko bwa `Indolent systemic mastocytosis` bugenda bukura buhoro bashobora kugenzura indwara neza bakoresheje imiti. Bashobora kubaho ubuzima busanzwe. Ariko, abantu bafite ubundi bwoko bukomeye bashobora kubaho igihe gito. Ariko, `(Systemic Mastocytosis)` bashobora gukira burundu hakoreshejwe uburyo bwitwa ``Bone marrow transplant``. Ariko, abaganga batanga ubwo buryo gusa ku bantu bari mu byiciro bikomeye by'indwara.

Ni gute nakwiyitaho mu gihe mbana na `(Systemic Mastocytosis)`?

Kumenya itera ibimenyetso byawe no kubyirinda ni cyo kintu cy'ingenzi ushobora gukora mu gihe ubana na Mastocytosis yo mu bwoko bwa Systemic. Niba ufite iyi ndwara, menya ibi bintu:

• Buri gihe ujye witwaza EpiPen. Vuza vuba ikibazo gikomeye cy’ubwivumbure.
• Menya neza ibyo bigutera kandi ubyirinde uko bishoboka kose.
• Gucunga imihangayiko. Itoze gutekereza cyangwa ubundi buryo bwo gutekereza.
• Ambara umukandara w'ubutabazi bw'abaganga uriho urutonde rw'imiti udashobora gufata. Ibi ni ingenzi cyane kuko bifasha abaganga kumenya uko umerewe niba udashobora kuvuga mu gihe cy'impanuka.

Ni ryari ngomba kubonana na muganga?

Niba ufite indwara ya Systemic Mastocytosis, uzakenera kujya kwa muganga wawe kugira ngo agusuzumishe buri gihe. Nanone, menya neza ko wabibwiye muganga wawe niba hari ibimenyetso bishya ugaragaje, cyangwa niba hari ibimenyetso byawe bisa n'aho birushaho kwiyongera.

Ni ibihe bibazo ngomba kubaza muganga?

Kubera ko indwara ya Systemic Mastocytosis ari indwara idakunze kugaragara, ushobora kuba ufite ibibazo byinshi. Dore bimwe mu bibazo ugomba kubaza muganga wawe:

• Ni ubuhe bwoko bwa "Systemic Mastocytosis" mfite?
• Ni ibihe bimenyetso bindi bishobora kugaragaza ko indwara yanjye irushaho kuba mbi?
• Ni ubuhe buryo bwo kuvura buhari ku bwoko bwanjye?
• Ese uburyo bwo kuvurwa buzakuraho burundu ibimenyetso byanjye?
• Ese hari igeragezwa ry'ubuvuzi nshobora kwitabira?

Gupimwa indwara ya Systemic Mastocytosis ni ikintu gihindura ubuzima. Ugomba kujya kwa muganga wawe buri gihe, gupimwa amaraso, no kumenya no kwirinda ibyagutera. Kubana n'iyi ndwara ni ikintu gikomeye. Rero, komeza umubano mwiza na muganga wawe. Barahari kugira ngo bagufashe. Bazaguha amakuru n'amatsinda y'ubufasha ashobora kugufasha. Ibi bizaguha imbaraga zo gufata ibyemezo ku buzima bwawe.

Amaherezo, ibintu byo kwibuka (Ubutumwa bwo kujyana mu rugo)

Sawa, twavuze byinshi kuri `(Systemic Mastocytosis)`, si byo se? Wibuke ko nubwo iyi ari indwara idakunze kugaragara, ni ngombwa cyane kuyimenya.

Igikuru ni ukubonana na muganga niba ufite ibi bimenyetso. Iyo indwara igaragaye hakiri kare, imiti ishobora gutangira kandi ibimenyetso bikaba byagenzurwa.

Ntabwo uri wenyine. Abaganga bawe, umuryango wawe, n'inshuti zawe barahari kugira ngo bagufashe. Umenye amakuru akwiye kandi ugakurikiza inama za muganga wawe, ushobora kubaho neza n'iki kibazo. Komeza gutuza kandi utekereze neza!