Kodi inuyo kapena mwana wanu muli ndi MPS I? Tiyeni tiphunzire za katemera wa Laronidase!

Nthawi zina timakhala ndi matenda omwe sitingathe kuwaganizira, sichoncho? Chimodzi mwa matenda otere ndi Mucopolysaccharidosis I, yomwe mwachidule timaitcha MPS I. Uwu ndi matenda osowa kwambiri. Ngati inu kapena mwana wanu muli ndi vutoli, ndikumvetsa momwe lingakhalire lovuta komanso lopsinjika. Koma musadandaule, pali mankhwala omwe angathandize kuwongolera zizindikirozi. Lero tikambirana za mankhwala ofunikira kwambiri, omwe ndi katemera wotchedwa Laronidase. Tiyeni tiwone zomwe amachita komanso momwe amagwiritsidwira ntchito.

Kodi Laronidase ndi mankhwala otani?

Mwachidule, Laronidase ndi mankhwala omwe amabwezeretsa enzyme yapadera yomwe ikusowa kapena yosowa m'thupi lathu. Tangoganizirani, ma enzyme awa amathandiza chilichonse m'thupi lathu kuti chigwire ntchito bwino. Monga antchito ang'onoang'ono. Tsopano, m'thupi la anthu omwe ali ndi MPS I, enzyme inayake ikusowa kapena siyikugwira ntchito bwino. Mankhwalawa amaperekedwa kuti akwaniritse zosowazo. Izi zimathandiza kuwongolera zina mwa zizindikiro za matendawa. Koma chinthu chimodzi choyenera kukumbukira ndichakuti iyi si mankhwala omwe amachiritsa matendawa kwathunthu. Koma imathandiza kwambiri pochepetsa zizindikiro ndikupangitsa moyo kukhala wosavuta.

Nthawi zina mungawone mankhwalawa pansi pa dzina lodziwika bwino la Aldurazyme. Mankhwalawa angagwiritsidwenso ntchito pazinthu zina. Ngati muli ndi mafunso okhudza mankhwalawa, funsani dokotala wanu kapena wamankhwala .

Kodi ndi zinthu ziti zomwe muyenera kuuza gulu lanu lachipatala musanayambe kumwa mankhwalawa?

Musanayambe chithandizo cha Laronidase ichi, muyenera kuuza gulu lanu lachipatala, kutanthauza dokotala ndi namwino, za zinthu izi. Chifukwa ndikofunikira kwambiri kuti adziwe zinthu izi kuti akuthandizeni bwino.

• Tiuzeni ngati munayamba mwakhalapo ndi vuto la mankhwala awa, mankhwala ena aliwonse, chakudya, utoto, kapena zosungira.
• Ngati muli ndi pakati kapena mukuyembekezera kutenga pakati, auzeni zimenezo.
• Ngati ndinu mayi woyamwitsa, muyeneranso kutchula zimenezo.

Ngati muwauza zinthuzi popanda kuwabisa, adzatha kukuchitirani zinthu zomwe zingakukomereni. Eti?

Kodi mumapeza bwanji mankhwala awa?

Laronidase imaperekedwa ngati mankhwala olowetsedwa m'mitsempha. Iyi si mankhwala omwe mungamwe nokha kunyumba.Imaperekedwa ndi katswiri wodziwa bwino ntchito zachipatala kuchipatala kapena ku chipatala. Izi zikutanthauza kuti dokotala kapena namwino adzakupatsani. Choncho palibe choopa, iwo ndi akatswiri pa izi.

Kodi mankhwalawa angaperekedwe kwa ana aang'ono?

Inde, mankhwalawa angaperekedwe kwa makanda aang'ono ngati miyezi 6 nthawi zina. Komabe, pali zinthu zina zomwe muyenera kusamala nazo mukamapatsa ana aang'ono. Chifukwa chake, ngati mukupereka mankhwalawa kwa mwana wanu, ndi bwino kukambirana bwino ndi dokotala wa ana anu ndikupeza tsatanetsatane wonse.

Nanga chimachitika ndi chiyani ngati mwamwa mankhwala ochulukirapo?

Popeza mankhwalawa amaperekedwa moyang'aniridwa ndi dokotala, mwayi woti munthu agwiritse ntchito mopitirira muyeso ndi wochepa kwambiri. Komabe, nthawi zina mukaganiza kuti mwamwa mankhwala ochulukirapo, kapena ngati mukumva zachilendo, muyenera kuyimbira foni kuchipatala chowongolera poizoni kapena kuchipatala chadzidzidzi nthawi yomweyo. Komabe, ndikubwerezanso, mwayi woti izi zichitike ndi wochepa, chifukwa izi zimaperekedwa moyang'aniridwa ndi dokotala.

Chofunika: Mankhwalawa ndi a inu nokha. Musagawane ndi ena.

Kodi mungachite chiyani ngati mwaphonya mlingo wa mankhwala?

Ndikofunikira kwambiri kumwa mankhwalawa pa nthawi yake. Ngati simungathe kupita kuchipatala kapena ku chipatala tsiku kapena nthawi yomwe mwakonza, kapena ngati mwaphonya mlingo, imbani dokotala wanu kapena katswiri wa zaumoyo nthawi yomweyo. Adzakuuzani choti muchite kenako.

Kodi mankhwalawa angagwirizane ndi mankhwala ena? (Kugwirizana)

Kawirikawiri, mankhwalawa, Laronidase, sakuyembekezeka kuyambitsa kuyanjana kwakukulu ndi mankhwala ena. Izi zikutanthauza kuti, sachitapo kanthu kwambiri ndi mankhwala ena.

Komabe, izi sizikutanthauza kuti sipadzakhala mavuto. Chifukwa chake, ndibwino kuuza dokotala wanu za mankhwala onse omwe mumamwa, osati omwe dokotala wanu wakupatsani okha, komanso omwe mumagula ku pharmacy (mankhwala osaperekedwa ndi dokotala), mankhwala achikhalidwe (zitsamba), mavitamini ( zowonjezera zakudya). Komanso, uzani dokotala wanu ngati mumasuta fodya, kumwa mowa, kapena kugwiritsa ntchito mankhwala ena. Zinthu zina zingakhudze mankhwala anu mwanjira ina. Mndandandawu sufotokoza momwe mankhwalawo angagwirizanire.

Ndi zinthu ziti zomwe muyenera kusamala nazo kwambiri mukamamwa mankhwalawa?

Mukapatsidwa mankhwala awa, Laronidase, matenda anu adzayang'aniridwa mosamala kwambiri ndi madokotala anu.Izi zikutanthauza kuti nthawi zonse amakuyang'anirani.

Ndikofunikanso kuonana ndi dokotala wanu nthawi zonse kuti muwone ngati zizindikiro zanu zikuchepa kapena zikuipiraipira. Ngati zizindikiro zanu sizikuchepa kapena zikuoneka kuti zikuipiraipira, onetsetsani kuti mwauza dokotala wanu kapena katswiri wa zaumoyo.

"Chinthu chinanso, kuti mumvetse bwino MPS I ndi mankhwala ake, pali kaundula wapadera womwe umasonkhanitsa zambiri za odwala. Lankhulani ndi dokotala wanu za kuphatikiza dzina lanu mu izi. Zidzakhalanso zothandiza kwambiri pakufufuza kwamtsogolo kwa matendawa."

Kodi zotsatirapo zake zingakhale zotani chifukwa cha mankhwalawa?

Monga mankhwala ena aliwonse, katemera wa Laronidase uyu amatha kuyambitsa zotsatirapo zoyipa mwa anthu ena. Koma si aliyense amene amalandira. Pali zotsatirapo zina zomwe muyenera kuuza dokotala wanu nthawi yomweyo mukaziona. Palinso zina zomwe nthawi zambiri sizikhala zoopsa kwambiri. Tiyeni tiwone zomwe zili.

Zotsatirapo zomwe muyenera kuuza dokotala wanu nthawi yomweyo:

"Ngati mukukumana ndi zizindikiro izi, muyenera kuuza dokotala wanu kapena katswiri wa zaumoyo mwamsanga momwe mungathere:"

• Matenda a ziwengo : Izi zikuphatikizapo ziphuphu pakhungu, kuyabwa kapena ziphuphu, komanso kutupa kwa nkhope, milomo, kapena lilime.
• Mavuto opuma .
• Kusintha kwa masomphenya .
• Kupweteka pachifuwa .
• Chifuwa .
• Malungo .
• Kutupa kwa mapazi kapena manja .
• Kufiira kwa nkhope kapena kufinya .
• Kuthamanga kwa magazi kotsika .
• Ululu, kumva kuwawa, dzanzi m'manja kapena m'mapazi .
• Kufiira, kupweteka, kapena kutupa pamalo pomwe panabayidwa jekeseni .
• Kuoneka kwachikasu kwa maso kapena khungu - Izi zitha kukhala vuto la chiwindi.

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

"Nthawi zina zinthuzi zimatha kuchitika mutalandira katemera. Nthawi zambiri, sizimakhala zoopsa, koma ngati zikupitirira, kapena ngati zikukuvutitsani, ndi bwino kuuza dokotala wanu ."

• Kupsa pang'ono kapena kupweteka pamalo pomwe adabayidwa jakisoni .

Mndandanda uwu si zotsatirapo zonse zomwe zingatheke. Ngati muwona china chilichonse chomwe chikuwoneka kuti sichili bwino, lankhulani ndi dokotala wanu. Muthanso kunena za zotsatirapo izi ku FDA (Food and Drug Administration) pa 1-800-FDA-1088.

Kodi mankhwala awa mumasunga kuti?

Iyi si nkhani yofunika kwambiri, chifukwa mankhwala awa si chinthu chomwe mungapite nacho kunyumba. Amaperekedwa kuchipatala kapena ku chipatala chokha. Chifukwa chake simuyenera kuda nkhawa kuti mankhwalawa ndi otetezeka, ogwira ntchito zachipatala adzasamalira zimenezo.

Pomaliza, chinthu chofunika kwambiri

Chabwino, ndikukhulupirira kuti tsopano mwamvetsa bwino za katemera wa Laronidase yemwe tinakambirana. Kumbukirani, uwu ndi mankhwala omwe amaperekedwa moyang'aniridwa ndi dokotala wapadera kuti athandize kuwongolera zizindikiro za matenda osowa otchedwa MPS I.

"Ngati inu kapena mwana wanu mukulandira chithandizochi, tsatirani malangizo a dokotala monga momwe akunenerani. Ngati muli ndi mafunso kapena kukayikira kulikonse, musawasunge nokha. Alipo kuti akuthandizeni. Ngakhale kuti mankhwalawa sachiza matendawa kwathunthu, apangitsa moyo kukhala wosavuta pang'ono ndikukupatsani mphamvu zolimbana ndi zizindikiro. Musataye mtima! "

Kabuku aka ndi chidule chokha. Sikangakhale ndi mfundo zonse. Ngati muli ndi mafunso ena okhudza mankhwalawa, chonde lankhulani ndi dokotala wanu, wamankhwala, kapena wopereka chithandizo chamankhwala.

Laronidase , MPS I, Mucopolysaccharidosis I, Chithandizo cha Enzyme, Aldurazyme, Matenda osowa