Kodi dokotala wanu anakupatsaninso mapiritsi a Sapropterin? Tiyeni tikambirane mwatsatanetsatane za izi!

Moni! Lero tikambirana za mankhwala omwe ndi achilendo pang'ono, koma kwa anthu ena ndi ofunikira kwambiri pa miyoyo yawo. Amenewo ndi Sapropterin. Ngati inu, munthu amene mumamudziwa, kapena mwana wanu ali ndi vuto losowa lotchedwa `Phenylketonuria`, lomwe limadziwikanso kuti `(PKU)` mwachidule, ndiye kuti mwina mwamvapo za mankhwalawa. Chifukwa chake, tiyeni tiwone kuti mankhwalawa ndi otani kwenikweni, momwe amathandizira thupi lathu, komanso zinthu zomwe tiyenera kusamala nazo kwambiri tikamagwiritsa ntchito.

Choyamba, tiyeni tiwone, kodi Phenylketonuria (PKU) ndi chiyani?

Mwachidule, `Phenylketonuria` ndi matenda a majini omwe amabadwa nawo. Munthu amene ali ndi vutoli sangathe kugawa bwino amino acid yotchedwa `Phenylalanine`. Mwina mukudabwa kuti, `Phenylalanine` ndi chiyani? Imapezeka muzakudya zambiri zokhala ndi mapuloteni ambiri zomwe timadya, mwachitsanzo, mkaka, nyama, nsomba, mazira, ndi mtedza.

Kotero, mwa munthu amene ali ndi `PKU`, `phenylalanine` (Phenylalanine) iyi imayamba kusonkhana m'thupi. Zili ngati zinyalala zochepa zomwe zikusonkhana. Kuchulukana kumeneku sikwabwino, makamaka ku ubongo. Ngati izi sizikulamuliridwa ali mwana, kukula kwa ubongo kumatha kulepheretsedwa, ndipo mavuto monga mavuto a kukula kwa nzeru, kusintha kwa khalidwe, komanso khunyu amatha kuchitika. Ndicho chifukwa chake anthu omwe ali ndi `PKU` ayenera kutsatira zakudya zapadera zomwe zili ndi `phenylalanine` yochepa (Phenylalanine).

Kodi Sapropterin ingathandize bwanji pa izi?

Apa ndi pomwe mankhwala `Sapropterin` (Sapropterin)` amayambira. Si mankhwala a `PKU`, koma amathandiza kuchepetsa kuchuluka kwa `Phenylalanine` (Phenylalanine) m'thupi la odwala ena a `PKU` (osati onse). Izi zikutanthauza kuti, mankhwalawa amathandiza thupi kugawa `Phenylalanine` (Phenylalanine)` (Phenylalanine) bwino pang'ono. Koma ayenera kugwiritsidwa ntchito limodzi ndi zakudya zapaderazo. Dokotala adzasankha ngati mankhwalawa ndi oyenera inu kapena mwana wanu, komanso kuchuluka kwa zomwe angapereke.

Mankhwalawa akhoza kukhala ndi mayina monga ``JAVYGTOR`` kapena ``KUVAN``.

Ndi zinthu ziti zomwe ndiyenera kuuza dokotala ndisanayambe kumwa mankhwalawa?

Ngati inu kapena munthu amene mukumwa mankhwalawa ali ndi vuto lililonse mwa zotsatirazi, muyenera kuuza dokotala wanu musanayambe kumwa mankhwalawa. Ndi bwino kusabisa izi, chifukwa zingakhudze thanzi lanu.

• Kodi muli ndi vuto lililonse la kudya lachilendo? Mwachitsanzo, anorexia kapena bulimia.
• Kodi muli ndi malungo? Kapena muli ndi matenda enaake?
• Kodi muli ndi matenda a impso?
• Kodi muli ndi matenda a chiwindi?
• Kodi munayamba mwadwalapo khunyu, monga khunyu?
• Kodi muli ndi vuto la Sapropterin, mankhwala ena, zakudya, utoto, kapena zosungira?
• Kodi muli ndi pakati? Kapena mukuyembekezera kutenga pakati?
• Kodi ndinu mayi woyamwitsa?

Ndikofunikira kwambiri kukambirana zonsezi momasuka ndi dokotala.

Chabwino, ndiye ndiyenera kugwiritsa ntchito bwanji mankhwalawa?

Ichi ndi chinthu chomwe muyenera kudziwa bwino. Muyenera kutsatira zomwe dokotala akunena.

• Mapiritsi awa ayenera kumwedwa pakamwa pa chakudya .
• Imwani mankhwala omwe dokotala wanu anakupatsani, monga momwe alembedwera pa chizindikiro cha mankhwala, mu kuchuluka komwe kwalembedwa, panthawi yomwe mwapatsidwa.
• Mapiritsiwa akhoza kumezedwa onse ndi madzi, kapena akhoza kusungunuka mu ma ounces 4 mpaka 8 (pafupifupi ma milliliters 120 mpaka 240) a madzi kapena madzi a apulo.
• Chofunika kwambiri: Muyenera kumwa mkati mwa mphindi 15 mutasungunuka. Musasiye kwa nthawi yaitali kuposa pamenepo.
• Ngati mukufuna kuti mapiritsi asungunuke mwachangu, mutha kuwaphwanya kapena kuwasakaniza bwino ndi supuni pamene akusungunuka.
• Nthawi zina mungaone tinthu tating'onoting'ono tikuyandama m'madzi popanda mapiritsi kusungunuka kwathunthu. Izi ndi zachilendo. Ngati pali tinthu tating'onoting'ono totsala mugalasi mutamwa mankhwala, onjezerani madzi pang'ono kapena madzi a apulo, sakanizani, ndikumwanso. Mwanjira imeneyi, mankhwala onse adzayamwa.
• Njira ina ndiyo kuphwanya mapiritsiwo ndikuwasakaniza ndi chakudya chochepa, monga applesauce kapena pudding.
• Ndikofunikira kwambiri kumwa mankhwala anu nthawi yomweyo tsiku lililonse, nthawi yomweyo tsiku lililonse. Musamwe mankhwala ochulukirapo kuposa momwe dokotala wanu wanenera, kapena siyani kumwa mankhwala anu popanda kuwapempha.

Ndi yapadera ngati iperekedwa kwa ana aang'ono:

Ngati mukupereka mankhwalawa kwa mwana wanu, muyenera kulankhula ndi dokotala wanu wa ana za izi. Ngakhale kuti mankhwalawa angaperekedwe kwa makanda a mwezi umodzi pazochitika zina zapadera, pali zinthu zina zomwe muyenera kusamala nazo. Chifukwa chake, tsatirani zomwe dokotala wanena.

Kodi mungachite chiyani ngati mwamwa mankhwala ochulukirapo?

Ngati zimenezo zitachitika, ndiye kuti, ngati mukuganiza kuti mwamwa mankhwala ambiri kuposa momwe munaganizira, imbani malo oletsa poizoni kapena chipinda chodzidzimutsa chapafupi nthawi yomweyo. Musataye nthawi.

Chofunika kudziwa: Mankhwalawa ndi a inu nokha. Musapatse wina aliyense mankhwala anu, ngakhale atakhala ndi zizindikiro zomwezo monga inu.

Nanga bwanji ngati ndaphonya mlingo wa mankhwala?

Ngati izi zitachitika, imwani mlingo womwe mwaphonya mwamsanga mukangokumbukira. Komabe, ngati nthawi yatsala pang'ono yoti mutenge mlingo wotsatira, thawani mlingo womwe mwaphonya ndikumwa mlingo wotsatira panthawi yomwe mwakonza. Musamwe milingo iwiri nthawi imodzi.

Kodi pali mankhwala ena omwe angagwirizane ndi mankhwalawa?

Inde, pakhoza kukhalapo. Pali mankhwala angapo omwe angagwirizane ndi Sapropterin. Mwachitsanzo:

• Avanafil `(avanafil)`
• Levodopa `(levodopa)`
• Methotrexate
• Pemetrexed
• Pyrimethamine
• Sildenafil `(sildenafil)`
• Tadalafil `(tadalafil)`
• Vardenafil `(vardenafil)`

Mndandandawu sunathe. Chifukwa chake, uzani dokotala wanu za mankhwala onse omwe mumamwa (omwe amalembedwa ndi dokotala kapena omwe amagulitsidwa pamtengo wotsika), zitsamba, mavitamini, ndi zowonjezera zakudya zomwe mumagwiritsa ntchito. Komanso, uzani dokotala wanu ngati mumasuta fodya, mumamwa mowa, kapena mumagwiritsa ntchito mankhwala osokoneza bongo. Zinthu zina zingakhudze mankhwala awa.

Ndiyenera kusamala kwambiri ndi chiyani ndikamamwa mankhwalawa?

Ichinso ndi gawo lofunika kwambiri.

• Dokotala wanu nthawi zonse azifufuza momwe mulili. Choncho, musaphonye kupita kuzipatala pa masiku omwe mwakonza ndikuyesedwa magazi . Makamaka, muyenera kuyang'ana kuchuluka kwa phenylalanine m'magazi anu nthawi zonse.
• Zingatenge milungu inayi kuti mankhwalawa agwire ntchito m'thupi. Choncho musadandaule.
• Ngati zizindikiro zanu sizikusintha, kapena ngati zikuoneka kuti zikuipiraipira, uzani dokotala wanu.
• Chofunika kwambiri: Muyenera kutsatira zakudya zapadera mukamamwa mankhwalawa. Izi zikutanthauza kudya zakudya zopanda phenylalanine. Dokotala wanu kapena katswiri wa zakudya adzakufotokozerani mwatsatanetsatane. Musasinthe zakudya zanu popanda upangiri wa dokotala.

Kodi zotsatirapo zake zingakhale zotani chifukwa cha mankhwalawa?

Monga mankhwala ena onse, mankhwalawa akhoza kukhala ndi zotsatirapo zazing'ono. Ena ndi oopsa, pomwe ena si oopsa kwambiri.

Ngati zinthuzi zitachitika, muyenera kuuza dokotala nthawi yomweyo!

• Ngati ndi vuto la ziwengo: Zimatanthauza ziphuphu pakhungu, kuyabwa, ziphuphu, kutupa kwa nkhope, milomo, ndi lilime.
• Ngati ndowe zanu zili zakuda kapena zamagazi, kapena ngati mukusanza magazi.
• Kuvuta kupuma.
• Ngati mukumva chizungulire, mutu wopepuka, kapena ngati kuti mwatsala pang'ono kugwa.
• Zizindikiro monga kugwedezeka, kusakhazikika, kulankhula kwambiri, ndi kuthamangathamanga (kuthamanga kwambiri). (Izi ndi zoona makamaka kwa ana aang'ono)
• Ngati muli ndi ululu waukulu m'mimba.

Izi nthawi zambiri sizili zoopsa, koma ngati zikupitirira, uzani dokotala wanu :

• Chifuwa
• Chimbudzi chotayirira (kutsegula m'mimba)
• Mutu
• Kusanza, kusanza
• Chikhure
• Mphuno yotuluka madzi, mphuno yodzaza

Mndandandawu suli ndi zotsatirapo zonse zoyipa. Ngati muwona china chake chachilendo, funsani dokotala wanu. Muthanso kunena za zotsatirapo zoyipa ku FDA (Food and Drug Administration) pa 1-800-FDA-1088.

Kodi muyenera kusunga bwanji mankhwala anu?

• Sungani pamalo omwe ana sangafikire . Izi ndizofunikira kwambiri.
• Sungani kutentha kwa chipinda (pakati pa madigiri 20 ndi 25 Celsius / madigiri 68 ndi 77 Fahrenheit).
• Sungani mankhwalawo mu chidebe choyambirira chomwe adalowamo. Tsekani botolo mwamphamvu.
• Musagwiritse ntchito mankhwala otha ntchito. Tayani.

Pomaliza, chikumbutso pang'ono

Ichi ndi chidule chabe cha zomwe takambirana zokhudza mankhwala a `Sapropterin`. Ngati muli ndi mafunso ena okhudza mankhwalawa, chonde funsani dokotala wanu, wamankhwala, kapena wothandizira zaumoyo wina. Musachite mantha ndi chilichonse kapena sungani chilichonse kwa inu nokha.

Zinthu zofunika kuzikumbukira (Uthenga Wopita Nawo Kunyumba)

Chabwino, kodi tikukumbutseninso mfundo zomwe muyenera kukumbukira kuchokera pa zomwe takambiranazi?

• Sapropterin ndi mankhwala omwe amathandiza kuchepetsa kuchuluka kwa phenylalanine mwa anthu ena omwe ali ndi phenylketonuria (PKU).
• Iyi si mankhwala , ndipo iyenera kugwiritsidwa ntchito limodzi ndi zakudya zapadera zokha.
• Musanamwe mankhwala, uzani dokotala wanu za matenda anu onse komanso mankhwala onse omwe mumamwa.
• Ngati mukuchepetsa mankhwalawo, imwani mkati mwa mphindi 15.
• Ndikofunikira kwambiri kuti mayeso oyenera achitike panthawi yoyenera.
• Ngati mukukumana ndi zotsatirapo zachilendo, uzani dokotala wanu nthawi yomweyo.
• Musasinthe zakudya zanu popanda upangiri wa dokotala.

Ngati inu kapena mwana wanu mwapatsidwa mankhwala awa, tsatirani malangizo a dokotala monga momwe akunenerani. Pokhapokha mudzatha kugwiritsa ntchito bwino mankhwalawa, kuwongolera bwino vuto lanu la `PKU`, ndikukhala ndi moyo wathanzi. Ndikukufunirani zabwino zonse!

Sapropterin , Phenylketonuria, Phenylketonuria, PKU, Phenylalanine, Phenylalanine, Mankhwala, Mankhwala, Zotsatirapo Zake