Disease Directory Myotonia Congenita
Neuromuscular

Myotonia Congenita

Also known as: Thomsen disease, Becker myotonia, CLCN1 myotonia

Prevalence

1 in 25,000 to 1 in 100,000

Onset

Infancy to early childhood

Type

Autosomal dominant (Thomsen) or autosomal recessive (Becker)

Gene

CLCN1

About Myotonia Congenita

Myotonia Congenita is caused by loss-of-function mutations in the CLCN1 gene encoding the skeletal muscle voltage-gated chloride channel (ClC-1), leading to membrane hyperexcitability and impaired muscle relaxation. The dominant Thomsen form is generally milder, while the recessive Becker form is more severe and may include transient episodic weakness. The hallmark is generalised myotonia (muscle stiffness) that improves with repeated activity — the 'warm-up phenomenon'.

Common Clinical Features

Generalised muscle stiffness and myotonia from infancy Warm-up phenomenon (stiffness improves with repeated movement) Muscle hypertrophy giving an athletic appearance Transient episodic weakness (more prominent in Becker myotonia) Eyelid myotonia (difficulty opening eyes rapidly) Cold-exacerbated myotonia Normal creatine kinase or mildly elevated

Clinical Trial Eligibility Tips

What to know before applying to Myotonia Congenita trials.

EMG showing myotonic discharges and genetic confirmation of CLCN1 mutation are both typically required; dominant vs recessive status affects which trial cohort you qualify for

Clinical myotonia severity scales and grip myotonia assessment by hand-held dynamometry after prolonged contraction are standard endpoints — document these with a neurologist before applying

Sodium channel blockers (mexiletine) are the current standard of care; washout periods before enrolment are common so plan ahead for medication holds

Patient Resources

Patient Organization

Myotonia Congenita Support Group / MDA

Visit website ↗

Orphanet

European reference resource for rare diseases (ORPHA:614)

View on Orphanet ↗

NORD

National Organization for Rare Disorders

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Find recruiting Myotonia Congenita trials

Search 500,000+ studies from ClinicalTrials.gov, filtered for Myotonia Congenita. Updated daily.

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