Highlights
- •Multiple system atrophy (MSA) is a rare, progressive neurodegenerative disease with no available disease modifying treatment.
- •Awareness by medical practitioners about multiple system atrophy as a diagnostic possibility is severely lacking.
- •Lack of awareness of the disease has amplified the unmet needs of multiple system atrophy patients and other stakeholders.
- •Since the 1980’s a growing movement to highlight the plight of those affected by multiple system atrophy has emerged.
- •Stakeholders are uniting to attack MSA from a global perspective in the hopes of improving outcomes for future patients.
Abstract
Multiple system atrophy (MSA) is a rare, progressive and ultimately fatal neurodegenerative
disease with no known cause and no available disease modifying treatment. Known previously
by various names including Shy-Drager Syndrome, olivopontocerebellar atrophy (OPCA)
and striatonigral degeneration, MSA can be classified simultaneously as a movement
disorder, an autonomic disorder, a cerebellar ataxia and an atypical parkinsonian
disorder.
Despite scholarly attempts to better describe the disease, awareness among medical
practitioners about multiple system atrophy as a diagnostic possibility has been slow
to catch on. As a result, patients often go undiagnosed for many years or are largely
misdiagnosed as Parkinson's disease. The non-homogeneous clinical presentation of
MSA and years of confusing nomenclature have all contributed to a lack of awareness
of the disease among healthcare professionals as well as the public. This lack of
awareness has amplified the unmet needs of MSA patients and other stakeholders.
Since the 1980s there has been a growing advocacy effort directed at this rare disease
from advocacy groups, grassroots supporters, healthcare professionals and research
networks. These stakeholders are beginning to unite their efforts and attack the disease
from a global perspective in the hopes of improving outcomes for MSA patients in the
future.
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References
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Web references
- History of AAS.
- Miracles for MSA.(Facebook page)
- Blog: A Caregiver to MSA Caregivers.
- The Multiple System Atrophy Coalition History.
- History: Our Founder, Sarah Matheson.
- Meer aandacht en middelen naar zeldzame ongeneeslijke ziekte MSA dankzij N-VA (More Attention and Resources for Rare Incurable MSA Disease Thanks to N-VA).
- Multiple System Atrophy Coalition to be Prime Sponsor of Major International Scientific Conference.http://www.prweb.com/releases/2016/02/prweb13198893.htmDate: February 4, 2016
- The Multiple System Atrophy Coalition Honors 7th Annual International Multiple System Atrophy Awareness Month in March 2016.http://www.prweb.com/releases/2016/03/prweb13239642.htmDate: March 1, 2016
- The Multiple System Atrophy Coalition Surpasses $1 Million Milestone in Research Funding.http://www.prweb.com/releases/2016/10/prweb13731826.htmDate: October 3, 2016
- Shy-Drager Syndrome Support Group Listserver.https://ww2.mc.vanderbilt.edu/adc/4791Date: 2017
- International Parkinson and Movement Disorder Society (MDS) Endorsed Multiple System Atrophy Study Group. Moving Along.(Volume 19 Issue 1 page 6)
- The Endeavor to Bring Awareness to MSA.
- Shy-Drager Multiple System Atrophy Support Group.
Article info
Publication history
Published online: December 16, 2017
Accepted:
December 15,
2017
Received in revised form:
December 14,
2017
Received:
August 2,
2017
Identification
Copyright
© 2017 Elsevier B.V. All rights reserved.
