Multiple System Atrophy (MSA)
What is Multiple System Atrophy (MSA)?
Multiple System Atrophy (MSA) is a rare and progressive neurological condition that affects adults, typically developing between the ages of 40 and 60, although it can occur in individuals between 30 and 70 years of age. MSA is caused by the gradual loss of nerve cells in specific areas of the brain, which can result in a combination of symptoms affecting movement, coordination, and the body’s autonomic functions such as blood pressure regulation, bladder control, and digestion.
MSA can resemble other conditions like Parkinson’s disease in its early stages, but it tends to progress more rapidly and involves a broader range of symptoms. Despite ongoing research, there is currently no cure for MSA, and its exact cause remains unknown. It is not a hereditary, infectious, or contagious disease.
How Common is MSA?
MSA was once considered extremely rare. However, advances in medical knowledge and improved diagnostic tools have led to increased recognition of the condition.
It is now estimated that MSA affects approximately 4.5 people per 100,000, equating to nearly 3,300 people currently living with MSA in the United Kingdom. In contrast, Parkinson’s disease, a more commonly known neurological disorder, affects approximately 210 people per 100,000 – making it around 45 times more common than MSA.
Diagnosis can still be a challenge, and it may take years before a person receives a confirmed diagnosis. However, new diagnostic criteria are helping healthcare professionals identify MSA earlier and more accurately.
Who is Affected by MSA?
Multiple System Atrophy can affect both men and women and typically begins during mid-adulthood. The condition is sporadic, meaning it does not run in families. While researchers have learned much about how the disease impacts the brain, the root cause of MSA is still not fully understood.
What is known is that MSA is not passed from parent to child, and it cannot be transmitted from one person to another. As such, it is not inherited, infectious, or contagious.
Ongoing research is essential in shedding more light on the underlying mechanisms of the disease and finding effective treatments and ultimately a cure.
About the Multiple System Atrophy Trust
The Multiple System Atrophy Trust is the leading UK and Ireland-based charity dedicated to supporting people affected by MSA.
Our vision is a world free from Multiple System Atrophy.
Our mission is to find the cause of the disease and, ultimately, a cure. In the meantime, the Trust is committed to providing comprehensive support, information, and advocacy for those living with MSA, their families, and the professionals involved in their care.
To learn more about their services and resources offered, visit:
Rare Disease Groups & OrganisationsSupport in Northern Ireland
People affected by MSA in Northern Ireland and the Republic of Ireland can access specialist support through the Trust’s Health and Care Services. This includes individual advice and guidance, support at specialist clinics, and collaboration with healthcare teams.
Demelza Stuart is the Health and Care Specialist for Northern Ireland and the Republic of Ireland. With a background in occupational therapy and over 16 years of experience in the NHS and voluntary sector—including in palliative care and neurology—Demelza offers expert support to individuals, carers, and healthcare professionals.
She is available from Monday to Thursday and can be contacted at:
Phone: 0289 079 1641
Email: demelza.stuart@msatrust.org.uk
Healthcare professionals can also receive tailored advice, educational resources, and training sessions to better understand and support patients with MSA.
Peer Support and Community
Living with a rare condition like MSA can be isolating. Many individuals may never meet someone else affected by the condition. To address this, the MSA Trust facilitates various opportunities for people to connect with others in similar circumstances.
This includes both online and in-person support groups. In Northern Ireland, a regular in-person support group meets in Belfast. These groups are open to anyone affected by MSA, including family members, carers, and healthcare providers.
To join a support group or find out more, please contact: support@msatrust.org.uk
If you are looking for further connection and community, Northern Ireland Rare Disease Partnership (NIRDP) offers additional support through RareChat. This is a welcoming, supportive space where individuals affected by rare diseases—including MSA—can come together to share experiences, ask questions, and find encouragement.
RareChat is a valuable way to connect with others who understand the challenges of living with a rare condition.
Join RareChat and become part of a broader rare disease community in Northern Ireland.
To join the Rare Chat or find out more, please contact: info@nirdp.org.uk
Research into the Cause and Cure
The MSA Trust is the principal UK funder of innovative research into Multiple System Atrophy. Every research project brings us closer to understanding what causes MSA and how it can be treated or cured.
Recent advances include:
- Updated Diagnostic Criteria (2022): These new guidelines help clinicians identify MSA earlier in its course, potentially even before full symptoms develop. This includes the identification of “prodromal MSA,” where the disease is in its earliest stages.
- Seed Amplification Assays: This promising diagnostic tool can help detect the accumulation of abnormal alpha-synuclein protein in the brain, which may assist in distinguishing MSA from similar conditions like Parkinson’s disease.
- Clinical Trials: Several recent large-scale clinical trials have focused on symptom management and disease-modifying treatments. These trials demonstrate the feasibility of testing new therapies in people living with MSA and give hope for future breakthroughs.
To find out more about current and upcoming research, visit:
www.msatrust.org.uk/cause-and-cure
Download the Full Guide to MSA
For comprehensive information about MSA, including symptoms, diagnosis, treatment options, and daily living support, download our free guide:
Download the Guide to MSA (PDF)
You can also request a printed copy from the Trust if needed.
