Ese nawe urwaye indwara y'impyiko ya polycystic (PCK)? Reka tubiganireho!

Ese wigeze wumva indwara aho udusaho duto twuzuye amazi twibasira impyiko? Wenda hari umuntu wo mu muryango wawe uyirwaye, cyangwa warigeze kuyumva ahantu runaka. Iyi niyo twita Polycystic Kidney Disease (PKD) . Izina rishobora kumvikana nk'aho riteye ubwoba gato, ariko kumenya byinshi kuri yo bishobora kumvikana cyane. Reka tuvuge kuri PKD mu buryo burambuye uyu munsi.

PKD ni iki? Mu magambo make...

Mu magambo make, indwara y’impyiko ya Polycystic (PKD) ni indwara ituma urwara udukoko twinshi twuzuye amazi, tumeze nk’udusebe duto, mu mpyiko zawe . Ni indwara y’uturemangingo . Ibi bivuze ko ugomba kuba ufite gene yahinduwe mu mubiri wawe kugira ngo uyikuremo. Ibi bitandukanye cyane n’udukoko tw’impyiko, dukunze kwibasira impyiko zawe gusa kandi akenshi nta ngaruka mbi dufite.

Izi cysts ziva kuri PKD zishobora kwiyongera buhoro buhoro no kwaguka kw'impyiko zombi. Tekereza, rimwe na rimwe izi cysts zishobora kongera uburemere bw'impyiko kugeza kuri ibiro 30 (hafi ibiro 13.5)! Icyo gihe, impyiko zacu ntiziba zigikora akazi kazo ko kuyungurura imyanda mu maraso. Uko igihe kigenda gihita, iyi ndwara ishobora kuvamo indwara idakira y'impyiko , ishobora gutuma impyiko zinanirwa gukora neza . Mu by'ukuri, PKD ni yo mpamvu impyiko zigera kuri 2% zinanirwa gukora neza muri Leta Zunze Ubumwe za Amerika. Abantu benshi bafite PKD bazakenera dialyse cyangwa guterwa impyiko mu gihe runaka mu buzima bwabo.

Kubwibyo, niba muganga agusuzumye arwaye indwara ya PKD, icy'ingenzi ni ukudatinya ahubwo ni ugukorana na we kugira ngo hakorwe gahunda nziza yo kuvura kugira ngo habeho guhangana n'ingorane zishobora guterwa n'iyi ndwara.

Ni ubuhe bwoko bw'ingenzi bwa PKD?

Hari ubwoko bubiri bw'ingenzi bwa PKD. Reka tumenye gato kuri bo.

1. Indwara y'impyiko ya Autosomal Dominant Polycystic (ADPKD)

Ubu ni bwo bwoko bwa PKD bukunze kugaragara cyane. Bukunze kugaragara mu bantu bakuru, hagati y'imyaka 30 na 50. Ariko, rimwe na rimwe bushobora kugaragara mu bwana cyangwa mu bwangavu. Kugira ngo umuntu agire ubwo bwoko bwa PKD, umwe mu babyeyi be agomba kuba afite ihinduka ry'uturemangingo. Abantu bafite ADPKD bafite iri hinduka ry'uturemangingo twitwa `PKD1` cyangwa `PKD2`.

2. Indwara y'impyiko ya Autosomal Recessive Polycystic (ARPKD)

Ubu bwoko ni buke cyane. Bunatwa indwara y'ububabare bw'abana . Bubaho umwana akiri mu nda, ni ukuvuga mu gihe umwana ari mu nda., impyiko ntizikura neza. Abaganga bakunze kubimenya mu gihe cyo gupima umwana utwite (pregnant ultrasound scan) mu gihe atwite cyangwa nyuma yuko umwana avutse. Kugira ngo umwana agire ubu bwoko bwa ARPKD, ababyeyi bombi bagomba kugira ihinduka ry’uturemangingo tw’umubiri ryitwa `PKHD1`, kandi umwana agomba kuragwa iyo gene bombi.

Indwara ya PKD ikunze kugaragara gute?

Imibare igaragaza ko muri Leta Zunze Ubumwe za Amerika honyine hari abarwayi bagera ku 500.000 (500.000) barwaye indwara ya PKD.

Ubwoko bw'indwara ya ADPKD twavuze mbere, bukunze kugaragara cyane kurusha ARPKD. Abantu bagera kuri 90% bafite indwara ya ADPKD. ARPKD ni indwara idakunze kugaragara. Ifata umuntu umwe ku bantu 25.000.

Ni ibihe bimenyetso bisanzwe by'indwara ya PKD?

Ibimenyetso bishobora gutandukana bitewe n'ubwoko bw'indwara ya PKD ufite.

Ibimenyetso bya ADPKD

Abantu barwaye ADPKD, ubwoko bukunze kugaragara cyane, bashobora kutagira ibimenyetso kugeza bamaze gukura. Hari igihe udukoko twibasira impyiko dushobora kutagaragara kugeza igihe tubaye tunini cyane. Iyo ibimenyetso bigaragaye, bishobora kuba birimo:

• Ububabare mu mugongo cyangwa ku ruhande (byitwa "ububabare bwo mu gituza")
• Umuvuduko ukabije w'amaraso
• Kuribwa umutwe kenshi
• Amaraso mu nkari (Hematuria)
• Indwara zikunze kugaragara mu nzira y'inkari (UTIs)
• Amabuye mu mpyiko

Ibimenyetso bya ARPKD

Abana bafite ARPKD, ubwoko budasanzwe, bashobora kugaragaza ibimenyetso igihe bavuka cyangwa mu bwana. Hari igihe muganga ashobora kubona utunyangingo mu mpyiko z'umwana uri mu nda mu gihe cyo gupimwa ultrasound mbere yo kubyara.

Iyo umwana uvutse afite ARPKD, ashobora kugira ibimenyetso nk'ibi bikurikira:

• Kubyara umwana ufite ibiro bike
• Inda yabyimbye
• Kugira umuvuduko w'amaraso ukabije igihe cyo kuvuka
• Guhumeka bigoranye

Niba ufite ARPKD mu bwana, ushobora kugira ibimenyetso nk'ibi:

• Kunanirwa gukura (ibi byitwa "Kunanirwa gukura")
• Indwara zikunze kugaragara mu nzira y'inkari (UTIs)
• Umuvuduko ukabije w'amaraso
• Kubabara mu nda cyangwa mu gice cyo hasi cy'umugongo

Iyo ARPKD iri mu mwana uri mu nda, isuzuma rishobora kwerekana ibi bikurikira:

• Impyiko nini kurusha izisanzwe
• Urugero ruto rw'amazi yo mu nda

Ese ibimenyetso bya PKD bihora bigaragara vuba?

Oya, ntabwo ari byo. Iyi ndwara akenshi ntigaragara mu buryo bw'ubuvuzi, nta bimenyetso ifite . Ibyo bivuze ko iyi ndwara ishobora kugaragara mu mubiri nta bimenyetso bigaragara inyuma. Tekereza, hafi kimwe cya kabiri cy'abantu barwaye iyi ndwara bashobora kutamenya ko bayirwaye mu buzima bwabo bwose. Ibimenyetso bikunze kugaragara nyuma y'uko uduheri tw'amazi (cysts) tumaze gukura.

Ni iki gitera indwara ya PKD?

Nkuko twabivuze mbere, impamvu nyamukuru itera indwara ya PKD ni impinduka mu miterere y’uturemangingo . Uzi ko imiterere y’uturemangingo ari nk’inkingi z’ibanze z’umubiri wacu. Izi ngirabuzimafatizo tuzikura ku babyeyi bacu. Izi ngirabuzimafatizo zigena uko umubiri wacu ukwiye gukura no gukora. Hari igihe, mu gihe cy’inda, iyi ngirabuzimafatizo ihinduka kandi ntikoperwe neza. Niba ufite iyo mpinduka mu miterere y’uturemangingo, ishobora no kwanduzwa abana bawe. Indwara ya PKD ikunze gukura muri ubu buryo.

Ariko, ni gake cyane, nubwo ababyeyi bombi badafite iyi gene, indwara ishobora kuvuka bitewe n’impinduka mu gene.

Ni ibihe bintu bishobora gutera iyi ndwara?

Kubera ko indwara ya PKD ari indwara iterwa n’uturemangingo, ikintu nyamukuru gituma uyirwara ni amateka y’umuryango. Ni ukuvuga ko umwe mu babyeyi bawe afite iyi ndwara (cyane cyane iyo ari ADPKD) cyangwa ababyeyi bombi bakaba bayirwaye (iyo ari ARPKD).

Ni izihe ngorane zishobora guterwa n'indwara ya PKD?

Indwara y'ibicurane ishobora gutera ibibazo bikomeye by'ubuzima haba ku bantu bakuru ndetse no ku bana bato. Hari igihe ibyo tubona nk'ibimenyetso bya indwara y'ibicurane bishobora kuba ingorane. Urugero:

• Amabuye mu mpyiko
• Umuvuduko ukabije w'amaraso
• Indwara zo mu nzira y'inkari (UTI)

Byongeye kandi, indwara ya PKD ishobora gutera izindi ngorane zikomeye, nko:

• Imitsi y'amaraso iraturika mu bwonko (yitwa "Brain aneurysms")
• Ibibazo by'amara, urugero nka diverticulitis, indwara aho udufuka duto twibasira amara tugakwirakwira.
• Ibibazo by'imitsi y'umutima
• Kunanirwa kw'impyiko
• Ibibyimba by'umwijima n'ibibyimba bya pancreas
• Umuvuduko w'amaraso ukabije mu gihe cyo gutwita (witwa "Preeclampsia")

Ibi bishobora kwica abana bafite ARPKD ikomeye. Ukwezi kwa mbere k'ubuzima ni ingenzi cyane ku bana bavutse bafite ARPKD, kuko muri icyo gihe bashobora kugira ibibazo bikomeye byo guhumeka no kunanirwa kw'impyiko.

Indwara ya PKD ipimwa ite?

Umuganga w’indwara z’impyiko (umuganga w’inzobere mu ndwara z’impyiko) asanzwe agira uruhare runini mu gusuzuma no kuvura indwara z’impyiko. Azasuzuma neza ibimenyetso byawe n’amateka y’umuryango wawe, kandi ashobora gutegeka ko ibizamini byo gusuzuma impyiko zawe, nko:

• Ultrasound y'impyiko: Ubu buryo ni bwo bukoreshwa cyane kandi butababaza.
• Ultrasound mbere yo kubyara: Ibi bifasha kumenya niba umwana uri mu nda afite indwara zo mu nda.
• Gupima CT (gupima tomography): Ibi bishobora gutanga amashusho asobanutse neza y'impyiko n'uruhago.
• MRI (imaging magnetic resonance): Ibi binafasha kubona amashusho arambuye y'impyiko.

Byongeye kandi, mugangaGupima imiterere y'uturemangingo nabyo bishobora kuba inama. Iki kizamini gishobora gusuzuma niba hari gene yahindutse itera indwara ya PKD mu maraso cyangwa mu macandwe. Ibi bishobora kandi kwemeza ubwoko bwa PKD ufite.

Ni ubuhe buryo bwo kuvura indwara ya PKD?

Mu by’ukuri, nta muti uraboneka wavura indwara ya PKD. Uburyo bwo kuvura bugamije ahanini kugabanya ikwirakwira ry’indwara, kugenzura ibimenyetso no gukumira ingorane. Uburyo bw’ingenzi bwo kuvura indwara ya PKD ni ubu:

• Kugenzura umuvuduko w'amaraso: Umuvuduko ukabije w'amaraso ni umwanzi ukomeye wa PKD. Bityo rero, muganga wawe azagufasha kugenzura umuvuduko w'amaraso akoresheje imiti, indyo yuzuye umunyu muke, no gukora imyitozo ngororamubiri. Gukomeza umuvuduko w'amaraso yawe ku rugero rwiza bishobora kugabanya ibyago byo kurwara indwara zikomeye nk'indwara z'umutima na stroke.
• Inkunga yo guhumeka: Abana bafite ARPKD, ibihaha byabo bitarakura neza, kandi bafite ikibazo cyo guhumeka bashobora gukenera gufashwa n'icyuma gihumeka .
• Dialysis: Niba impyiko zawe zinaniwe kandi zitagishoboye gukora akazi kazo, ushobora gukenera "Dialysis" (igikorwa cyo gusukura amaraso yawe mu buryo bw'ubukorano). Muri iki gikorwa, imashini yitwa "Hemodialysis" iyungurura amaraso yawe hanze y'umubiri wawe. Muri "dialysis ya Peritoneal" iyungurura amaraso yawe ikoresheje amazi yihariye n'agace kitwa peritoneum gakikije inda yawe.
• Uburyo bwo kuvura imikurire: Abana bafite ibiro bike kandi bafite imikurire idakomeye bashobora gukenera ubufasha mu mikurire. Muganga ashobora kubagira inama yo kuvura imirire yihariye cyangwa imisemburo itera imikurire y’abantu .
• Gutera impyiko: Iyo ADPKD igeze aho impyiko zinanirwa gukora , ushobora gukenera guterwa impyiko . Gutera impyiko ni uburyo bwo kubaga aho impyiko yangiritse ikurwaho igasimbuzwa impyiko nzima ivuye ku muntu wayitanze.
• Kugabanya ububabare: Imiti ishobora gukoreshwa mu kugabanya ububabare buterwa n'indwara zandurira mu mpyiko, amabuye mu mpyiko, cyangwa ibibyimba bitwikiriye indwara ya PKD. Ariko, imiti iyo ari yo yose igabanya ububabare ufata igomba kwemezwa na muganga wawe . Imiti imwe n'imwe igabanya ububabare (cyane cyane NSAIDs) ishobora kongera kwangirika kw'impyiko.

Imyaka yo kubaho k'umuntu urwaye indwara ya PKD ni iyihe?

Ushobora kumva ufite ubwoba gato iyo ubyumvise, ariko ni ngombwa kumenya ukuri.

Iyo abantu barwaye ADPKD bavuwe neza, bagafata neza iyo ndwara, kandi bagakurikiza ubuzima bwiza,Ushobora kubaho ubuzima burambye kandi bwuzuye. Hafi kimwe cya kabiri cy'abantu barwaye ADPKD bazarwara impyiko ku myaka 70 kandi bazakenera dialyse cyangwa gusimbuzwa impyiko .

Ariko imiterere y’abana barwaye ARPKD ntabwo ari nziza cyane. Hafi kimwe cya gatatu cy’abana bavutse bafite ARPKD, cyane cyane abafite ibibazo bikomeye byo guhumeka, bapfa bakiri bato. Abana barokotse akenshi bakeneye kuvurwa no kwitabwaho by’umwihariko mu buzima bwabo bwose. Hafi kimwe cya kabiri cy’abana barokotse nyuma y’ubuto bwabo bagira ikibazo cy’impyiko hagati y’imyaka 15 na 20.

Ese indwara ya PKD ishobora kwirindwa?

Ikibabaje ni uko indwara ya PKD ari indwara iterwa n’uturemangingo, bityo ntishobora kwirindwa burundu . Ariko, ukurikije ubuzima bwiza, ukagenzura umuvuduko w’amaraso, kandi ugakurikiza inama z’abaganga witonze, ushobora kugabanya umuvuduko w’iyi ndwara cyangwa ugatinza ingaruka z’indwara nko kunanirwa kw’impyiko.

Ni ingenzi cyane ku bantu bafite indwara ya PKD bateganya kubyara kuvugana n'umujyanama mu by'imiterere y'umubiri kugira ngo bamenyeshwe ibyago byo kurwara iyi ndwara n'ingamba zafatwa kugira ngo bayirinde.

Ni iki nakora kugira ngo mbashe kubana na PKD?

Kubana n'indwara ya PKD bishobora kugorana, ariko ukurikije ubuzima bwiza no kumenya iyi ndwara, ushobora koroshya urugendo. Dore inama zimwe na zimwe zagufasha:

• Kurya indyo ibereye impyiko . Ibi bigomba kwibanda ku biribwa birimo umunyu muke, potasiyumu na fosifore. Saba inama zihariye kwa muganga wawe cyangwa inzobere mu mirire kuri ibi.
• Kora imyitozo ikubereye, nibura iminota 30 ku munsi, iminsi myinshi y'icyumweru.
• Komeza kugira ibiro byiza by'umubiri.
• Suzuma umuvuduko w'amaraso yawe buri gihe kandi uwugenzure ukurikije amabwiriza ya muganga wawe.
• Niba unywa itabi cyangwa ukoresha ibindi bicuruzwa by'itabi, hagarika ako kanya.
• Irinde inzoga nyinshi uko bishoboka kose.
• Shaka uburyo bwo kugabanya imihangayiko. Ibintu nko gutekereza cyane no gukora yoga bishobora gufasha.
• Nywa amazi menshi n'ibinyobwa bitarimo kafeyine (icyayi gito, ikawa nkeya) umunsi wose. Ariko, niba ukeneye kugabanya amazi mu gihe icyo ari cyo cyose cy'indwara y'impyiko, kurikiza inama za muganga wawe.
• Gusinzira neza nibura amasaha arindwi buri joro.
• Fata imiti yose wahawe na muganga wawe neza, ku gihe, kandi mu gipimo cyagenwe. Ntugahagarike gufata imiti iyo ari yo yose utabanje kugisha inama muganga.

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

Niba ufite indwara ya PKD, ugomba kuba usanzwe ukurikiranwa na muganga. Ariko, niba ugize kimwe muri ibi bimenyetso mu buryo butunguranye , gana muganga cyangwa ujye kwa muganga ako kanya :

• Niba amaguru yawe, uturenge, cyangwa ibirenge byawe bibyimba mu buryo butunguranye (ibi byitwa edema)
• Niba ubabara cyane mu gituza cyangwa ukumva ufunze mu gituza cyawe
• Niba ufite ikibazo gitunguranye cyo guhumeka
• Niba udashobora kunyara
• Iyo inkari zivuye amaraso menshi cyane
• Niba ubabara umutwe cyane cyangwa ukagira impinduka mu maso

Ni ibihe bibazo ngomba kubaza muganga wanjye?

Ni ibisanzwe kugira ibibazo byinshi kuri iyi ndwara. Ntutinye kubaza muganga wawe ibibazo nk'ibi:

• Ni ubuhe bwoko bwa PKD mfite? (ADPKD cyangwa ARPKD?)
• Ni izihe ngaruka mbi abana banjye banduta iyi ndwara?
• Ese nkeneye gukora ibindi bizamini byihariye?
• Ni ubuhe buryo bwo kuvura bunkwiriye?
• Ni izihe mpinduka nkwiye gukora ku mirire yanjye, cyane cyane ku bijyanye n'umunyu, potasiyumu na fosifore?
• Ese ngomba guhindura imibereho yanjye (siporo, gusinzira, nibindi)?
• Ese nshobora gukenera dialyse cyangwa gusigwa impyiko mu gihe kiri imbere?
• Ni izihe ngaruka mbi cyangwa ingorane ngomba kumenya by'umwihariko?
• Ni izihe ngaruka mbi z'imiti nywa?

Amaherezo, icyo ugomba kwibuka (Ubutumwa bwo kujyana mu rugo)

Ubu uzi ko indwara ya Polycystic Kidney Disease (PKD) ari indwara iterwa n’uturemangingo ituma impyiko zikora. Izi cysts zishobora gutuma impyiko zikura kandi zikabangamira imikorere yazo. Akenshi zifata abantu bakuru, ariko ni gake cyane, ubwoko bubi bwa PKD bushobora kugaragara mu bana bato.

Nubwo nta muti uhari wo kuvura indwara ya PKD, ntugahangayike. Mu gucunga ibimenyetso byawe neza, gukurikiza inama za muganga wawe, no kubaho ubuzima bwiza, ushobora kubaho neza n'iyi ndwara. Icy'ingenzi ni ugukorana bya hafi na muganga wawe no kubona ibizamini n'imiti ukeneye. Ntabwo uri wenyine, kandi hari abaganga, umuryango, n'inshuti bashobora kugufasha muri uru rugendo.

Indwara y'impyiko ya Polycystic , PKD, indwara y'impyiko, cysts z'impyiko, indwara z'uturemangingo, ADPKD, ARPKD