Unique medical issues in adult patients with mucopolysaccharidoses
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- 作者：John Mitchella ; john.mitchell@muhc.mcgill.ca" class="auth_mail" title="E-mail the corresponding author ; Kenneth I. Bergerb ; Kenneth.Berger@nyumc.org" class="auth_mail" title="E-mail the corresponding author ; Andrea Borgoc ; andrea.borgo@sanita.padova.it" class="auth_mail" title="E-mail the corresponding author ; Elizabeth A. Braunlind ; braun002@umn.edu" class="auth_mail" title="E-mail the corresponding author ; Barbara K. Burtone ; bburton@luriechildrens.org" class="auth_mail" title="E-mail the corresponding author ; Kemel A. Ghotmef ; Kemel11@yahoo.com" class="auth_mail" title="E-mail the corresponding author ; Susanne G. Kircherg ; susanne.kircher@meduniwien.ac.at" class="auth_mail" title="E-mail the corresponding author ; David Molterh ; molterd@ent.wustl.edu" class="auth_mail" title="E-mail the corresponding author ; Paul J. Orchardd ; orcha001@umn.edu" class="auth_mail" title="E-mail the corresponding author ; James Palmeri ; james.palmer@srft.nhs.uk" class="auth_mail" title="E-mail the corresponding author ; Gregory M. Pastoresj ; gpastores@mater.ie" class="auth_mail" title="E-mail the corresponding author ; David M. Rapoportb ; david.rapoport@mssm.edu" class="auth_mail" title="E-mail the corresponding author ; Raymond Y. Wangk ; rawang@CHOC.org" class="auth_mail" title="E-mail the corresponding author ; Klane Whitel ; Klane.white@seattlechildrens.org" class="auth_mail" title="E-mail the corresponding author
- 关键词：DAS ; Difficult Airway Society ; ERT ; Enzyme replacement therapy ; GAGs ; Glycosaminoglycans ; HSCT ; Hematopoietic stem cell transplantation ; MPS ; Mucopolysaccharidosis ; QoL ; Quality of life
- 刊名：European Journal of Internal Medicine
- 出版年：2016
- 出版时间：October 2016
- 年：2016
- 卷：34
- 期：Complete
- 页码：2-10
- 全文大小：559 K
文摘
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The unique medical issues of adults with mucopolysaccharidosis (MPS) are discussed.
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MPS patients are living to adulthood because of better care and emerging therapies.
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The progressive multi-organ manifestations of MPS require multi-disciplinary care.
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Continuation of routine evaluations and streamlining of adult care are important.
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Establishing experienced multi-disciplinary management teams can optimize outcomes.