Living with Tibial muscular dystrophy
A genetic muscle condition that slowly weakens the muscles at the front of the lower leg, usually after age 35.
Understanding Tibial muscular dystrophy
Signs usually appear after age 35. The first sign is usually weakness of the muscle that lifts the foot (the tibialis anterior), which makes walking on the heels hard. Weakness worsens very slowly, and later foot drop can develop. GARD says most people remain able to walk throughout life. A small number have a different pattern starting in childhood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Weak muscle at the front of the lower leg
- Trouble walking on the heels
- Foot drop (trouble lifting the front of the foot)
- High-stepping walk (steppage gait)
- Ankle weakness
- Muscle disease (myopathy)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists and genetic specialists.
- 3Consider genetic testing
Changes in TTN are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Muscular Dystrophy Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Muscular Dystrophy Association
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Muscular Dystrophy Association and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
This condition is caused by changes in the TTN gene. It is autosomal dominant, which means one changed copy of the gene can be enough to cause it.
Also known as: distal myopathy, udd type; distal titinopathy; finnish tibial muscular dystrophy; tardive tibial muscular dystrophy; tibial muscular dystrophy, tardive; tmd
Patient organizations
- Muscular Dystrophy AssociationTibial muscular dystrophy · United States
- Team TitinTibial muscular dystrophy · United States
You are more than your diagnosis
Perspectives from people navigating life with Tibial muscular dystrophy.
Explore research for Tibial muscular dystrophy
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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