Overview
Tibial muscular dystrophy (TMD), also known as Udd myopathy or Udd distal myopathy, is a rare inherited muscle disease that mainly affects the muscles at the front of the lower leg, particularly the tibialis anterior muscle. This is the muscle that helps you lift your foot upward when you walk. The disease causes these muscles to slowly weaken and waste away over time, which can make walking difficult and may eventually lead to a foot drop — a condition where you cannot lift the front part of your foot properly. TMD usually begins in adulthood, most often after the age of 35 to 40, and progresses very slowly. In most people, the weakness stays limited to the lower legs for many years or even decades. Some people may also develop mild weakness in other muscles over time, but the disease rarely affects the heart or breathing muscles significantly. There is currently no cure for tibial muscular dystrophy. Treatment focuses on managing symptoms and maintaining quality of life. Physical therapy, ankle-foot orthoses (special braces), and assistive devices can help people stay mobile and independent for a long time. Because the disease progresses slowly, many people live full and active lives with the right support.
Also known as:
Key symptoms:
Weakness in the muscles at the front of the lower legFoot drop — difficulty lifting the front of the foot when walkingTripping or stumbling more than usualDifficulty walking on heelsWasting or thinning of the lower leg musclesMild weakness in thigh muscles in some peopleDifficulty climbing stairs in later stagesSlow, gradual worsening of muscle strength over many yearsPossible mild weakness in other limb muscles over time
Clinical phenotype terms (19)— hover any for plain English
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Late onset
Begins later in life, typically after age 50
FDA & Trial Timeline
10 eventsDaniela Ap. Biasotto-Gonzalez — NA
Arpana Church — NA
Centre Hospitalier Universitaire de Nice — NA
Kutahya Health Sciences University
Federal University of Rio Grande do Sul — NA
Örebro University, Sweden
Bahria University
Kutahya Health Sciences University
Urbano Santana Penin
Lund University Hospital
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Tibial muscular dystrophy.
3 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Rare Disease Specialist
Rare Disease Specialist
Rare Disease Specialist
Rare Disease Specialist
Rare Disease Specialist
Treatment Centers
8 centersNational Institutes of Health Clinical Center
📍 Bethesda, Maryland
👤 Payal P Khincha, M.D.
👤 Christopher Grunseich, M.D.
Children's Hospital Colorado
📍 Aurora, Colorado
👤 Zachary Grinspan, MD
Arkansas Children's Hospital
📍 Little Rock, Arkansas
Boston Children's Hospital
📍 Boston, Massachusetts
Cincinnati Children's Hospital Medical Center
📍 Cincinnati, Ohio
Ann & Robert H. Lurie Children's Hospital of Chicago
📍 Chicago, Illinois
Phoenix Children's Hospital
📍 Phoenix, Arizona
👤 Study Director
Akron Children's Hospital
📍 Akron, Ohio
👤 Study Director
Travel Grants
No travel grants are currently matched to Tibial muscular dystrophy.
Community
No community posts yet. Be the first to share your experience with Tibial muscular dystrophy.
Start the conversation →Latest news about Tibial muscular dystrophy
Disease timeline:
New recruiting trial: Occlusal Equilibration vs. Sham Therapies for TMDs: Post-Trial Follow-up (OEST)
A new clinical trial is recruiting patients for Tibial muscular dystrophy
New recruiting trial: Treatment of Temporomandibular Disorders in Children and Adolsecents
A new clinical trial is recruiting patients for Tibial muscular dystrophy
New recruiting trial: Tele-Rehabilitation in Patients With Temporomandibular Dysfunction
A new clinical trial is recruiting patients for Tibial muscular dystrophy
New recruiting trial: Journaling Intervention for Temporomandibular Disorder (TMD) and Chronic Overlapping Pain
A new clinical trial is recruiting patients for Tibial muscular dystrophy
New recruiting trial: Impact of Orthodontic Treatment on the Temporomandibular Joints (TMJ) Assessed by Modjaw
A new clinical trial is recruiting patients for Tibial muscular dystrophy
New recruiting trial: Effects of Neck Stabilizers Retraining on Chronic Neck Pain
A new clinical trial is recruiting patients for Tibial muscular dystrophy
New recruiting trial: Comparison of Treatment Modalities in Myofascial Pain Syndrome
A new clinical trial is recruiting patients for Tibial muscular dystrophy
New recruiting trial: Virtual Planning of Total Temporomandibular Joint Replacement
A new clinical trial is recruiting patients for Tibial muscular dystrophy
New recruiting trial: The New Serial Treatment of Temporomandibular Disorders
A new clinical trial is recruiting patients for Tibial muscular dystrophy
New recruiting trial: TMJ Arthroscopy Compared to Arthrocentesis in Disc Displacement Without Reduction
A new clinical trial is recruiting patients for Tibial muscular dystrophy
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.
Questions for your doctor
Bring these to your next appointment
- Q1.Which specific TTN gene mutation do I have, and what does that mean for how my disease might progress?,Should my family members be tested for this condition, and if so, who should be tested first?,Would an ankle-foot orthosis (brace) help me, and how do I get fitted for one?,How often should I have follow-up appointments, and what tests will be done to monitor my condition?,Are there any clinical trials or research studies I could participate in?,What type of exercise is safe and beneficial for me, and should I avoid any activities?,Are there any other muscles or organs I should be monitored for, such as the heart?
Common questions about Tibial muscular dystrophy
What is Tibial muscular dystrophy?
Tibial muscular dystrophy (TMD), also known as Udd myopathy or Udd distal myopathy, is a rare inherited muscle disease that mainly affects the muscles at the front of the lower leg, particularly the tibialis anterior muscle. This is the muscle that helps you lift your foot upward when you walk. The disease causes these muscles to slowly weaken and waste away over time, which can make walking difficult and may eventually lead to a foot drop — a condition where you cannot lift the front part of your foot properly. TMD usually begins in adulthood, most often after the age of 35 to 40, and progre
How is Tibial muscular dystrophy inherited?
Tibial muscular dystrophy follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Tibial muscular dystrophy typically begin?
Typical onset of Tibial muscular dystrophy is late onset. Age of onset can vary across affected individuals.
Are there clinical trials for Tibial muscular dystrophy?
Yes — 3 recruiting clinical trials are currently listed for Tibial muscular dystrophy on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Tibial muscular dystrophy?
25 specialists and care centers treating Tibial muscular dystrophy are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.