Kodi mwana wanu ali ndi PKU (Phenylketonuria)? Tiyeni tikambirane za ufa wa Sapropterin!

Nthawi zina, ana athu ndi ife tokha timakhala ndi matenda enaake apadera, sichoncho? Vuto limodzi lotere limatchedwa Phenylketonuria (lomwe limadziwikanso kuti PKU mwachidule). Limodzi mwa mankhwala omwe amaperekedwa pa vutoli ndi Sapropterin. Chifukwa chake lero, tiyeni tiphunzire za mankhwala awa otchedwa Sapropterin, monga momwe timalankhulira ndi mnzanu.

Kodi mankhwalawa ndi chiyani? (Kodi Sapropterin ndi chiyani?)

Mwachidule, Sapropterin ndi mankhwala omwe amathandiza kuchepetsa kuchuluka kwa mankhwala otchedwa phenylalanine m'thupi la anthu omwe ali ndi vuto lotchedwa Phenylketonuria, kapena PKU. Mukukumbukira, zidutswa zazing'ono za mapuloteni muzakudya zomwe timadya zimatchedwa amino acid? Phenylalanine ndi imodzi mwa amino acid zotere. Munthu amene ali ndi PKU sangathe kuswa bwino phenylalanine iyi, kutanthauza kuti, kuigaya ndi kuigwiritsa ntchito momwe akufunira. Kenako imasonkhana m'magazi ndipo imatha kuwononga ubongo ndi dongosolo lamanjenje pakapita nthawi.

Mankhwala a Sapropterin awa amathandiza kuswa phenylalanine m'thupi. Kenako, kuchulukana kwake m'magazi kumachepa. Nthawi zambiri, pamodzi ndi mankhwalawa, madokotala amalangiza kudya zakudya zapadera ndipo nthawi zina kuchita masewera olimbitsa thupi. Chifukwa, pankhaniyi, muyenera kuchepetsa kuchuluka kwa chakudya chokhala ndi phenylalanine momwe mungathere.

Madokotala angaperekenso mankhwala awa pa matenda ena, kotero ngati muli ndi mafunso aliwonse, ndi bwino kufunsa dokotala wanu kapena wamankhwala .

Nthawi zambiri mutha kugula mankhwalawa ku ma pharmacies omwe ali ndi mayina a JAVYGTOR kapena KUVAN.

Zinthu zoti muuze dokotala wanu musanamwe mankhwalawa

Musanayambe kumwa Sapropterin, muyenera kuuza dokotala wanu za izi. Chifukwa ndi pamenepa pomwe angadziwe ngati mankhwalawa ndi oyenera kwa inu komanso kuchuluka kwa mankhwala omwe angakupatseni. Kubisa izi kungokubweretserani mavuto.

• Kodi muli ndi vuto lililonse la kudya ? Izi zikutanthauza matenda monga anorexia (kuchepa thupi m'maganizo chifukwa chosadya) ndi bulimia (kudya kwambiri kenako nkusanza).
• Kodi muli ndi malungo ?
• Kodi muli ndi matenda aliwonse?
• Kodi muli ndi matenda a impso ?
• Matenda a chiwindiapo?
• Kodi muli ndi vuto lomwe limakupangitsani kumva ngati mukudwala khunyu ? Kapena munayamba mwadwalapo kale?
• Kodi munayamba mwakhalapo ndi vuto la Sapropterin, mankhwala ena, chakudya, utoto wa chakudya, kapena zotetezera?
• Ngati muli ndi pakati kapena mukukonzekera kutenga pakati (izi ndizofunikira kwambiri).
• Ngati ndinu mayi woyamwitsa .

Ndikofunikira kwambiri pa thanzi lanu kuuza dokotala zinthu izi popanda kuzibisa, eti?

Kodi mumagwiritsa ntchito bwanji mankhwalawa?

Chabwino, tsopano tiyeni tiwone momwe tingagwiritsire ntchito mankhwalawa molondola. Awa ndi mankhwala omwa. Ayenera kumwedwa pamodzi ndi chakudya. Muyenera kutsatira malangizo omwe ali pa chizindikiro cha mankhwala omwe dokotala wanu wakupatsani. Musamwe mopitirira muyeso kapena mochepera kuposa kuchuluka kwa mankhwala omwe dokotala wanu wakuuzani.

Uwu umabwera ngati ufa. Muyenera kumwa mwa kuusungunula m'madzi kapena madzi a apulo. Funsani dokotala wanu kapena wamankhwala kuti akuuzeni kuchuluka kwa madzi kapena madzi a apulo omwe muyenera kumwa. Ufawo uyenera kusungunuka mwachangu, ngakhale kwathunthu. Muyenera kumwa mankhwalawo mkati mwa mphindi 30 mutasungunuka. Musasiye kwa nthawi yayitali kuposa pamenepo.

Chinanso, mutha kusakaniza ufa pang'ono mu applesauce (monga applesauce) kapena pudding. Funsani dokotala wanu za izi ngati kuli bwino kutero.

Imwani mankhwala anu pa nthawi yake, nthawi yomweyo tsiku lililonse ngati n'kotheka. Musamwe mankhwala ochulukirapo kuposa momwe dokotala wanu wanenera. Komanso, musasiye kumwa mankhwala anu mwadzidzidzi popanda upangiri wa dokotala. Kuchita zimenezi kungapangitse kuti vuto lanu likhale loipa kwambiri.

Momwe mungaperekere mankhwalawa kwa ana aang'ono

Nthawi zina zapadera, mankhwalawa angaperekedwe kwa makanda a mwezi umodzi. Komabe, pali njira zapadera zodzitetezera. Izi zikutanthauza kuti, pali zinthu zomwe muyenera kusamala nazo kwambiri. Chifukwa chake, lankhulani ndi dokotala wanu za izi ndikutsatira malangizo ake molondola. Kuchuluka kwa mankhwala kumatsimikiziridwa malinga ndi kulemera kwa mwana.

Chofunika kwambiri: Mankhwalawa ndi a inu nokha. Musapatse wina aliyense, ngakhale atakhala ndi zizindikiro zomwezo monga inu. Matenda a aliyense ndi osiyana, kotero si bwino kupereka mankhwala awa kwa aliyense popanda kufunsa dokotala kaye.

Kodi mumatani ngati mwaphonya nthawi yokumana ndi dokotala?

Chonde, musachite mantha nthawi ngati zimenezi. Ngati mwaphonya mlingo, imwani mwamsanga mukangokumbukira. Komabe, ngati nthawi yatsala pang'ono yoti mutenge mlingo wotsatira (monga mkati mwa maola ochepa), dumphani mlingo womwe mwaphonya ndikumwa mlingo wotsatira panthawi yomwe mwakonza. Musamwe mlingo wowirikiza kawiri.Muyenera kumwa kuchuluka komwe mwapatsidwa patsiku. Ngati mukukayikira izi, funsani dokotala wanu kapena wamankhwala.

Kodi mungachite chiyani ngati mwamwa mopitirira muyeso? (Kumwa mopitirira muyeso)

Ngati mukuganiza kuti mwamwa mankhwala ochulukirapo, kapena ngati mwana wanu mwangozi mwamwa mankhwala ochulukirapo, pitani ku chipinda chadzidzidzi chapafupi nthawi yomweyo. Kapena imbani malo owongolera poizoni. Izi ziyenera kuonedwa ngati zadzidzidzi , musazengereze.

Mankhwala ena omwe angagwirizane ndi mankhwalawa (Kuyanjana)

Pali mankhwala ena omwe sangagwire ntchito bwino kapena kuyambitsa mavuto ena akamwedwa ndi Sapropterin. Timawatcha kuti kuyanjana. Chifukwa chake, uzani dokotala wanu za mankhwala aliwonse omwe mukumwa.

• Avanafil `( Avanafil )`
• Levodopa (mankhwala a matenda a Parkinson)
• Methotrexate (yogwiritsidwa ntchito pa matenda monga khansa ndi nyamakazi)
• Pemetrexed
• Pyrimethamine (mankhwala ogwiritsidwa ntchito pochiza malungo)
• Sildenafil `(Sildenafil)`
• Tadalafil `(Tadalafil)`
• Vardenafil

Mndandandawu sungakhale ndi mankhwala onse. Chifukwa chake, uzani dokotala wanu za mankhwala onse omwe mumamwa (kuphatikizapo mavitamini, mankhwala azitsamba, ndi zowonjezera zakudya). Uzaninso dokotala wanu ngati mumasuta fodya, mumamwa mowa, kapena mumagwiritsa ntchito mankhwala osokoneza bongo. Zinthu zina zingakhudze mankhwala anu.

Zinthu zoti muzisamala nazo mukamamwa mankhwala

Pamene mukumwa mankhwala awa, dokotala wanu adzayang'anira thanzi lanu mosamala. Pitani kwa dokotala wanu nthawi zonse ndikuyesedwa magazi nthawi zonse. Mayeso a magazi awa amawunika kuchuluka kwa phenylalanine yanu ndikuwona ngati mankhwalawo akugwira ntchito bwino. Kumbukirani, zingatenge milungu inayi kuti thupi lanu liyankhe mankhwalawa. Choncho musachite mantha, ingokhalani oleza mtima.

Ngati zizindikiro zanu sizikusintha, kapena ngati zikuipiraipira, uzani dokotala wanu nthawi yomweyo.

Chofunika kwambiri ndichakuti muyenera kutsatira zakudya zapadera mukamamwa mankhwalawa. Muyenera kudya zakudya zomwe zili ndi phenylalanine yochepa. Izi ndizofunikira kwambiri pa PKU. Musanasinthe zakudya zanu, onetsetsani kuti mwalankhula ndi dokotala wanu kapena katswiri wazakudya. Angakupatseni mndandanda wa zakudya zomwe zili zabwino kwa inu komanso malangizo amomwe mungakonzekerere chakudya chanu.

Tangoganizirani, Nalini Akka, pamene akupereka mankhwala awa kwa mwana wake wamkazi yemwe ali ndi PKU, akuwongolera zakudya zake monga momwe dokotala wamuuzira. Asanakonze chakudya, nthawi zonse amafunafuna zakudya zomwe zili ndi phenylalanine yochepa. Akapita kusitolo, amawerenga zolemba pamapaketi a chakudya. Chisamaliro choterocho chikufunika pankhaniyi.

Kodi zotsatira zake ndi ziti?

Monga mankhwala ena aliwonse, Sapropterin ingayambitse zotsatirapo zoyipa mwa anthu ena. Komabe, si aliyense amene amalandira. Tiyeni tiwone zomwe zili.

Zotsatirapo zomwe muyenera kuuza dokotala wanu nthawi yomweyo:

Ngati mukukumana ndi zizindikiro izi, muyenera kuuza dokotala wanu nthawi yomweyo. Izi zitha kukhala zoopsa kwambiri.

• Matenda a ziwengo: Kutupa pakhungu, kuyabwa, kufiira kwa khungu, kutupa kwa nkhope, milomo, lilime kapena pakhosi (izi zingapangitsenso kuti kupuma kukhale kovuta).
• Kuchita zinthu mopitirira muyeso: Kusakhazikika, kugwedezeka, kulankhula mopitirira muyeso, komanso kuvutika kumvetsera.
• Kutupa kwa mmero kapena m'mimba: Kusowa chilakolako cha chakudya, kupweteka pakhosi, kupweteka kapena kuvutika kumeza, kutentha pachifuwa, nseru, kusanza, chifuwa chouma, ndowe zamagazi kapena zochedwa.

Zotsatirapo zomwe nthawi zambiri sizifuna upangiri wa dokotala, koma ziyenera kufotokozedwa kwa dokotala ngati zikupitirira:

Izi nthawi zambiri zimatha pakatha masiku ochepa. Koma ngati zikupitirira, kapena ngati zikukuvutitsani, uzani dokotala wanu.

• Chifuwa
• Kutsegula m'mimba
• Mutu
• Mphuno yotuluka madzi kapena mphuno yodzaza
• Chikhure
• Kusanza

Mndandandawu sungakhale ndi zotsatirapo zonse zoyipa. Ngati muwona china chilichonse chachilendo, funsani dokotala wanu za izi.

Kodi mumasunga bwanji mankhwalawo?

Ndikofunikanso kwambiri kusunga mankhwala awa moyenera.

• Sungani pamalo omwe ana ndi ziweto sangafikire.
• Sungani pamalo otentha (pakati pa madigiri 20 ndi 25 Celsius, pakati pa madigiri 68 ndi 77 Fahrenheit). Musayiike pamalo otentha kwambiri kapena ozizira.
• Sungani mankhwala awa mu chidebe choyambirira chomwe adalowamo.
• Tsekani botolo mwamphamvu kuti chinyezi chisatuluke.
• Musagwiritse ntchito mankhwala otha ntchito ndipo muwataye mosamala. Mutha kufunsa ku pharmacy yanu kuti akupatseni malangizo a momwe mungawatayire bwino.

Pomaliza, zinthu zoti muzikumbukira

Chabwino, takambirana zambiri za Sapropterin, sichoncho? Kukhala ndi vuto lotchedwa PKU kungakhale kovuta, koma ndi mankhwala ngati awa ndi upangiri woyenera wachipatala, inu ndi mwana wanu mutha kuthana ndi vutoli.

"Kumbukirani, ndikofunikira kwambiri kumwa mankhwalawa monga momwe dokotala wanenera, kuchuluka kwa mankhwala omwe mwapatsidwa, komanso nthawi yomwe mwapatsidwa. Komanso, ndikofunikira kutsatira zakudya zapadera.""Ngati muchita zinthu zonsezi bwino, mudzatha kuwongolera bwino matenda anu a PKU ndikukhala ndi moyo wathanzi."

Ngati muli ndi mafunso, nkhawa, kapena kukayikira kulikonse, musawabise nokha, koma musazengereze kufunsa dokotala wanu. Alipo kuti akuthandizeni. Simuli nokha paulendowu, tonse tili nanu!

Ndikukufunirani inu ndi mwana wanu thanzi labwino!

Sapropterin , Sapropterin, PKU, Phenylketonuria, Phenylketonuria, Phenylalanine, phenylalanine, mankhwala, thanzi la ana, matenda a majini