Ese umwana wawe afite PKU (Phenylketonuria)? Reka tuvuge ku ifu ya Sapropterin!

Hari igihe abana bacu natwe ubwacu tuba tugomba kubaho dufite indwara zidasanzwe, si byo se? Imwe muri izo ndwara yitwa Phenylketonuria (izwi kandi nka PKU mu magambo ahinnye). Imwe mu miti itangwa kuri iyi ndwara ni Sapropterin. None rero uyu munsi, reka twige kuri uyu muti witwa Sapropterin, kimwe no kuvugana n'inshuti.

Uyu muti ni iki? (Sapropterin ni iki?)

Muri make, Sapropterin ni umuti ufasha mu kugenzura ukwiyongera gukabije kw'ikinyabutabire cyitwa phenylalanine mu mubiri w'abantu bafite indwara yitwa Phenylketonuria, cyangwa PKU. Wibuke ko uduce duto twa poroteyine mu biryo turya twitwa aside amine? Phenylalanine ni imwe muri aside amine nk'izo. Umuntu urwaye PKU ntashobora gusenya iyi phenylalanine neza, ni ukuvuga kuyisya no kuyikoresha uko bikenewe. Hanyuma irarunda mu maraso kandi ishobora kwangiza ubwonko n'imitsi uko igihe kigenda gihita.

Uyu muti wa Sapropterin ufasha mu gusenya iyo phenylalanine mu mubiri. Hanyuma, kwirundanya kwayo mu maraso biragabanuka. Akenshi, hamwe n'uyu muti, abaganga bakugira inama yo kurya indyo yihariye ndetse rimwe na rimwe no gukora imyitozo ngororamubiri. Kubera ko, muri iki gihe, ugomba kugabanya ingano y'ibiryo birimo phenylalanine uko bishoboka kose.

Abaganga bashobora kandi kukwandikira uyu muti ku zindi ndwara, bityo niba ufite ikibazo icyo ari cyo cyose, ni byiza kubaza muganga wawe cyangwa umufarumasiye .

Ubusanzwe uyu muti ushobora kuwugura muri farumasi zikoresha ibirango bya JAVYGTOR cyangwa KUVAN.

Ibintu ugomba kubwira muganga wawe mbere yo gufata uyu muti

Mbere yo gutangira gufata Sapropterin, ugomba kubwira muganga wawe ibi bintu. Kuko ari bwo bwonyine bashobora kumenya niba uyu muti ukubereye n'ingano yawo. Guhisha aya makuru bizagutera ibibazo gusa.

• Ese ufite ikibazo cyo kurya ? Ni ukuvuga indwara nka anorexia (ikibazo cyo mu mutwe cyo kugabanya ibiro bitewe no kutarya) na bulimia (ikibazo cyo kurya cyane hanyuma ukaruka).
• Ufite umuriro ?
• Ese hari ubwandu ufite?
• Urwaye impyiko ?
• Indwara y'umwijimairahari?
• Ese ufite ikibazo kigutera kumva umeze nk'uri mu gifu ( igicuri ) ? Cyangwa wigeze ukirwara mbere?
• Ese wigeze ugira allergie kuri Sapropterin, undi muti, ibiryo, irangi ry'ibiribwa, cyangwa imiti irinda ubushyuhe?
• Niba utwite cyangwa uteganya gutwita (ibi ni ingenzi cyane).
• Niba uri umubyeyi wonsa .

Ni ingenzi cyane ku buzima bwawe kubwira muganga ibi bintu utamuhishe, sibyo?

Ukoresha uyu muti ute?

Noneho reka turebe uko wakoresha uyu muti neza. Uyu ni umuti unyobwa. Ugomba gufatwa hamwe n'amafunguro. Ugomba gukurikiza amabwiriza ari ku rupapuro rwa muganga waguhaye. Ntukigere ufata ibirenze cyangwa bike kuruta ibyo muganga wawe yagutegetse.

Iyi ifu iza ari ifu. Ugomba kuyinywa uyishongesha mu mazi cyangwa mu mutobe w'amapera. Baza muganga wawe cyangwa umufarumasiye ingano nyayo y'amazi cyangwa umutobe w'amapera ugomba gufata. Ifu igomba gushonga vuba, ndetse no mu buryo bwose. Ugomba kunywa umuti mu minota 30 nyuma yo gushonga. Ntuwureke igihe kirenze icyo.

Ikindi kandi, ushobora kandi kuvanga agace gato k'iyi fu mu isosi y'amapera (nk'isosi y'amapera) cyangwa pudding. Baza muganga wawe nabyo niba bikubereye.

Fata umuti wawe ku gihe, mu gihe kimwe buri munsi niba bishoboka. Ntugafate ibirenze ibyo muganga wawe akubwira. Nanone, ntugahagarike gufata umuti wawe mu buryo butunguranye utabanje kugirwa inama na muganga. Kubikora bishobora gutuma indwara yawe irushaho kuba mbi.

Uburyo bwo guha uyu muti abana bato

Mu bihe bimwe na bimwe byihariye, uyu muti ushobora guhabwa abana bato bafite ukwezi kumwe. Ariko, hari ingamba zidasanzwe zo kwirinda. Ni ukuvuga ko hari ibintu ugomba kwitondera cyane. Kubwibyo, vugana na muganga wawe kuri ibi kandi ukurikize amabwiriza ye neza. Ingano y'umuti igenwa hakurikijwe uburemere bw'umwana.

Icy'ingenzi kurushaho: Uyu muti ni uwawe gusa. Ntuwuhe undi muntu uwo ari we wese, kabone n'iyo yaba afite ibimenyetso bimwe nawe. Imiterere y'abantu bose iratandukanye, bityo si byiza guha uyu muti umuntu uwo ari we wese utabanje kugisha inama muganga.

Wakora iki iyo usibye gahunda yo gufata imiti?

Ndakwinginze, ntugatinye mu bihe nk'ibyo. Niba wabuze dose, uyifate vuba ubyibuka. Ariko, niba igihe cyo kuyifata gigeze hafi (ni ukuvuga mu masaha make), rekeraho dose yabuze hanyuma ufate dose ikurikira ku gihe cyagenwe. Ntukigere ufata dose ebyiri.Ugomba gufata ingano yagenwe gusa ku munsi. Niba ufite gushidikanya kuri ibi, baza muganga wawe cyangwa umufarumasiye.

Wakora iki niba ufata byinshi? (Kurenza urugero)

Niba utekereza ko wafashe imiti myinshi cyane, cyangwa niba umwana wawe yafashe imiti myinshi ku bw'impanuka, jya mu cyumba cy'ubutabazi bw'ibanze cy'ibitaro biri hafi yawe vuba. Cyangwa hamagara ikigo gishinzwe kurwanya uburozi. Ibi bigomba gufatwa nk'ikibazo cyihutirwa , ntutinde.

Indi miti ishobora kugira ingaruka kuri uyu muti (Interactions)

Hari imiti imwe n'imwe ishobora kudakora neza cyangwa igatera ibindi bibazo iyo ifashwe na Sapropterin. Ibyo tubyita imibonano mpuzabitsina. Kubwibyo, bwira muganga wawe imiti iyo ari yo yose ufata.

• Avanafil `( Avanafil )`
• Levodopa (umuti uvura indwara ya Parkinson)
• Methotrexate (ikoreshwa mu kuvura indwara nka kanseri na rubagimpande)
• Pemetrexed
• Pyrimethamine (umuti ukoreshwa mu kuvura malariya)
• Sildenafil `(Sildenafil)`
• Tadalafil `(Tadalafil)`
• Vardenafil

Uru rutonde rushobora kuba rudakubiyemo imiti yose. Kubwibyo, bwira muganga wawe imiti yose ufata (harimo na vitamine, imiti y'ibimera, n'inyongeramusaruro mu mirire). Bibwire kandi muganga wawe niba unywa itabi, unywa inzoga, cyangwa ukoresha ibiyobyabwenge bitemewe n'amategeko. Hari ibintu bishobora kugira ingaruka ku miti yawe.

Ibintu ugomba kwitondera mu gihe ufata imiti

Mu gihe ufata uyu muti, muganga wawe azagukurikiranira hafi. Reba muganga wawe buri gihe kandi upime amaraso buri gihe. Ibi bipimo by'amaraso bireba urugero rwa phenylalanine yawe kandi birebe niba umuti ukora neza. Wibuke ko bishobora gufata ibyumweru bigera kuri 4 kugira ngo umubiri wawe wihangane n'uyu muti. Ntugatinye rero, ihangane gusa.

Niba ibimenyetso byawe bitagenze neza, cyangwa birushijeho kuba bibi, bwira muganga wawe ako kanya.

Igikuru ni uko ugomba gukurikiza indyo yihariye mu gihe ufata uyu muti. Ugomba kurya ibiryo bifite fenilalanine nkeya. Ibi ni ingenzi kuri PKU. Mbere yo guhindura indyo yawe, banza uganire na muganga wawe cyangwa inzobere mu mirire. Bashobora kuguha urutonde rw'ibiribwa bikubereye n'inama z'uko wategura amafunguro yawe.

Tekereza, Nalini Akka, mu gihe aha uyu muti umukobwa we urwaye PKU, arimo kugenzura indyo ye nk'uko muganga yabimubwiye. Mbere yo gutegura ibiryo, ahora ashaka ibiryo bifite fenilalanine nkeya. Iyo agiye mu iduka, asoma ibyapa biri ku mapaki y'ibiryo. Ubwo buryo bwo kwitabwaho burakenewe muri iki gihe.

Ingaruka mbi ni izihe?

Kimwe n'indi miti yose, Sapropterin ishobora gutera ingaruka mbi ku bantu bamwe na bamwe. Ariko, si bose bazibona. Reka turebe ibyo ari byo.

Ingaruka mbi ugomba guhita ubibwira muganga wawe:

Niba ubonye kimwe muri ibi bimenyetso, ugomba kubimenyesha muganga wawe vuba. Ibi bishobora kuba bikomeye.

• Indwara zo kugira ubwivumbure: Gushyuha k'uruhu, kuribwa, gutukura k'uruhu, kubyimba mu maso, iminwa, ururimi cyangwa mu muhogo (ibi bishobora no gutuma guhumeka bigorana).
• Gukabya: Kudatuza, kuzungazunga, kuvuga cyane, kugorwa no gutega amatwi.
• Kubyimba k'umuyoboro w'amaraso cyangwa igifu: Kubura ubushake bwo kurya, kuribwa mu muhogo, kubabara cyangwa kugorwa no kumira, gushya mu gituza, isesemi, kuruka, inkorora yumye, kwitumamo amaraso cyangwa gutinda.

Ingaruka mbi ubusanzwe zidasaba inama kwa muganga, ariko zigomba kumenyeshwa muganga mu gihe zikomeje:

Ibi bikunze kugabanuka mu minsi mike. Ariko niba bikomeje, cyangwa niba bikubangamiye, bwira muganga wawe.

• Inkorora
• Impiswi
• Umutwe
• Izuru riva cyangwa izuru rizibye
• Kubabara mu muhogo
• Kuruka

Uru rutonde rushobora kuba rudafite ingaruka mbi zose. Niba ubonye ikindi kintu kidasanzwe, baza muganga wawe.

Ubika umuti ute?

Ni ngombwa kandi kubika uyu muti neza.

• Bika ahantu abana n'amatungo batagera.
• Bika ahantu hari ubushyuhe bw'icyumba (hagati ya dogere selisiyusi 20 na 25, hagati ya dogere selisiyusi 68 na 77). Ntukashyire ahantu hari ubushyuhe bwinshi cyangwa ubukonje bukabije.
• Bika uyu muti mu gikoresho cy'umwimerere wazanywemo.
• Bika icupa neza kugira ngo wirinde ko amazi asohoka.
• Ntugakoreshe imiti yarengeje igihe kandi uyijugunye witonze. Ushobora gusaba farumasi amabwiriza y'uko wayijugunya neza.

Amaherezo, ibintu byo kwibuka

Twavuze byinshi kuri Sapropterin, si byo se? Kubana n'indwara yitwa PKU bishobora kuba ikibazo, ariko hamwe n'imiti nk'iyi n'inama z'abaganga zikwiye, wowe n'umwana wawe mushobora gutsinda icyo kibazo.

"Wibuke ko ari ingenzi cyane gufata uyu muti nk'uko muganga yabigutegetse, mu rugero rwanditswe, no mu gihe cyanditswe. Nanone, ni ngombwa gukurikiza indyo yihariye.""Nukora ibi bintu byombi neza, uzabasha kugenzura neza indwara yawe ya PKU no kubaho ubuzima bwiza."

Niba ufite ikibazo, impungenge, cyangwa gushidikanya, ntukabihishe, ahubwo banza ubaze muganga wawe. Barahari kugira ngo bagufashe. Ntabwo uri wenyine muri uru rugendo, twese turi kumwe nawe!

Ndakwifurije ubuzima bwiza wowe n'umwana wawe!

Sapropterin , Sapropterin, PKU, Phenylketonuria, Phenylketonuria, Phenylalanine, phenylalanine, ubuvuzi, ubuzima bw'umwana, indwara z'uturemangingo