Postpoliomyelitis syndrome

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ORPHA:2942G14
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1Active trials15Specialists8Treatment centers

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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Postpoliomyelitis syndrome (PPS), also known as post-polio syndrome or postpolio sequelae, is a condition that affects survivors of acute paralytic poliomyelitis, typically developing 15 to 40 years after the initial poliovirus infection. It is characterized by new or progressive neuromuscular symptoms that occur in individuals who had previously achieved neurological stability following their acute polio illness. The condition primarily affects the neuromuscular system, resulting from ongoing degeneration of motor neurons that were damaged during the original poliovirus infection and had partially recovered through compensatory reinnervation of muscle fibers. Key clinical features include new progressive muscle weakness, muscle atrophy, generalized fatigue (both central and peripheral), muscle and joint pain (myalgia and arthralgia), cold intolerance, and decreased functional capacity. Some patients may also experience respiratory insufficiency, dysphagia (swallowing difficulties), and sleep disturbances. The weakness tends to affect muscles that were previously involved during the acute polio episode, though previously unaffected muscles may also be involved. Symptoms are often exacerbated by physical overexertion, emotional stress, and cold temperatures. There is currently no cure or specific disease-modifying treatment for postpoliomyelitis syndrome. Management is primarily supportive and multidisciplinary, focusing on symptom relief and preservation of function. This includes carefully supervised, non-fatiguing exercise programs, energy conservation strategies, assistive devices and orthotics, weight management, pain management, and respiratory support when needed. Intravenous immunoglobulin (IVIg) has been investigated in clinical trials with some evidence of modest benefit in reducing pain and improving quality of life, though it is not universally recommended. Physical and occupational therapy play central roles in maintaining mobility and independence.

Also known as:

Clinical phenotype terms— hover any for plain English:

Abnormality of mental functionHP:0011446Abnormal joint morphologyHP:0001367HypoventilationHP:0002791
Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

FDA & Trial Timeline

1 event
Jan 2024Effectiveness of Transcranial Magnetic Stimulation Treatment in Patients Diagnosed With Postpolio Syndrome: A Randomized Controlled Double-Blind Study

Ege University — NA

TrialACTIVE NOT RECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for Postpoliomyelitis syndrome.

1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

1 recruitingView all trials with filters →
N/A1 trial
Effectiveness of Transcranial Magnetic Stimulation Treatment in Patients Diagnosed With Postpolio Syndrome: A Randomized Controlled Double-Blind Study
N/A
Active
PI: Arzu On, Prof.Dr (Ege Universtiy) · Sites: Izmir, BORNOVA · Age: 2565 yrs

Specialists

15 foundView all specialists →
IL
Isabelle LAFFONT
Specialist
PI on 1 active trial
OF
Orla Hardiman, BSc MB BCh BAO MD FRCPI FAAN
Specialist
PI on 3 active trials
AP
Arzu On, Prof.Dr
Izmir, BORNOVA
Specialist

Rare Disease Specialist

PI on 1 active trial
DM
Dara Meldrum, MSc
Specialist
PI on 1 active trial
DB
Deirdre E Murray, BSc
Specialist
PI on 1 active trial
RB
Roisin Moloney, BSc
Specialist
PI on 1 active trial
FP
Frances Horgan, PhD
Specialist
PI on 1 active trial
AP
Ayşegül Ketenci, Prof
Specialist
PI on 1 active trial
MP
Michelle A Meade, PhD
Specialist
PI on 2 active trials
DP
Dirk Fischer, Prof.
Specialist
PI on 1 active trial
MI
MOIZIARD Vincent, intern
Specialist
PI on 1 active trial
CM
Claire Kalpakjian, PhD, MS
Specialist
PI on 2 active trials
IP
Ivan R Molton, PhD
SEATTLE, WA
Specialist
PI on 1 active trial
IP
Ivan Molton, PhD
SEATTLE, WA
Specialist
PI on 1 active trial

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Postpoliomyelitis syndrome.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Postpoliomyelitis syndrome

Disease timeline:

New trial: Effectiveness of Transcranial Magnetic Stimulation Treatment in Patients Diagnosed With Postpolio Sy

Phase NA trial recruiting. TMS

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Common questions about Postpoliomyelitis syndrome

What is Postpoliomyelitis syndrome?

Postpoliomyelitis syndrome (PPS), also known as post-polio syndrome or postpolio sequelae, is a condition that affects survivors of acute paralytic poliomyelitis, typically developing 15 to 40 years after the initial poliovirus infection. It is characterized by new or progressive neuromuscular symptoms that occur in individuals who had previously achieved neurological stability following their acute polio illness. The condition primarily affects the neuromuscular system, resulting from ongoing degeneration of motor neurons that were damaged during the original poliovirus infection and had part

At what age does Postpoliomyelitis syndrome typically begin?

Typical onset of Postpoliomyelitis syndrome is adult. Age of onset can vary across affected individuals.

Are there clinical trials for Postpoliomyelitis syndrome?

Yes — 1 recruiting clinical trial is currently listed for Postpoliomyelitis syndrome on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Postpoliomyelitis syndrome?

15 specialists and care centers treating Postpoliomyelitis syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.