Autosomal dominant Charcot-Marie-Tooth disease type 2Y

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ORPHA:435387OMIM:616687G60.0
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Overview

Autosomal dominant Charcot-Marie-Tooth disease type 2Y (CMT2Y) is a rare inherited nerve disease that belongs to a large family of conditions called Charcot-Marie-Tooth (CMT) disease. CMT diseases affect the peripheral nerves — the nerves that run from your spinal cord to your arms, legs, hands, and feet. In CMT2Y specifically, the nerve fibers themselves (called axons) are damaged over time, which is why it is classified as a 'type 2' or axonal form of the disease. People with CMT2Y typically experience slowly worsening muscle weakness and wasting, mainly in the lower legs and feet, along with reduced sensation such as numbness or tingling. The feet may develop a high arch (called pes cavus) or other deformities, and walking can become increasingly difficult. Symptoms usually begin in adulthood, though the age of onset can vary. The hands and arms may also be affected as the disease progresses. There is currently no cure for CMT2Y. Treatment focuses on managing symptoms and maintaining quality of life. This includes physical therapy, occupational therapy, orthotic devices such as ankle-foot braces, and pain management. Regular monitoring by a neurologist experienced in neuromuscular diseases is important. While CMT2Y is a lifelong condition, most people have a normal or near-normal lifespan.

Also known as:

Key symptoms:

Muscle weakness in the lower legs and feetMuscle wasting (shrinking) in the lower legs, giving a 'stork leg' appearanceHigh foot arches (pes cavus)Foot drop — difficulty lifting the front part of the foot when walkingNumbness or reduced sensation in the feet and lower legsTingling or burning sensations in the feetDifficulty walking or frequent tripping and fallsWeakness and wasting in the hands and forearms in later stagesReduced reflexes, especially at the anklesHammer toes or other foot deformitiesBalance problemsFatigue with physical activity

Clinical phenotype terms (43)— hover any for plain English
Distal upper limb muscle weaknessHP:0008959Hand muscle atrophyHP:0009130Impaired tactile sensationHP:0010830
Inheritance

Autosomal dominant

Passed on from just one parent; each child has about a 50% chance of inheriting it

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Autosomal dominant Charcot-Marie-Tooth disease type 2Y.

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No actively recruiting trials found for Autosomal dominant Charcot-Marie-Tooth disease type 2Y at this time.

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No specialists are currently listed for Autosomal dominant Charcot-Marie-Tooth disease type 2Y.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

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 Autosomal dominant Charcot-Marie-Tooth disease type 2Y.

Search all travel grants →NORD Financial Assistance ↗

Community

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Caregiver Resources

NORD Caregiver Resources

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Mental Health Support

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Family & Caregiver Grants

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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 change in the PLEKHG5 gene 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?,Are there any medications, supplements, or anesthetics I should avoid because they could worsen my nerve damage?,What type of physical therapy program is best for my current level of symptoms?,Are there any clinical trials for CMT2Y or related conditions that I might be eligible for?,How often should I have nerve conduction studies or other tests to monitor disease progression?,What signs should prompt me to seek urgent medical attention?

Common questions about Autosomal dominant Charcot-Marie-Tooth disease type 2Y

What is Autosomal dominant Charcot-Marie-Tooth disease type 2Y?

Autosomal dominant Charcot-Marie-Tooth disease type 2Y (CMT2Y) is a rare inherited nerve disease that belongs to a large family of conditions called Charcot-Marie-Tooth (CMT) disease. CMT diseases affect the peripheral nerves — the nerves that run from your spinal cord to your arms, legs, hands, and feet. In CMT2Y specifically, the nerve fibers themselves (called axons) are damaged over time, which is why it is classified as a 'type 2' or axonal form of the disease. People with CMT2Y typically experience slowly worsening muscle weakness and wasting, mainly in the lower legs and feet, along wi

How is Autosomal dominant Charcot-Marie-Tooth disease type 2Y inherited?

Autosomal dominant Charcot-Marie-Tooth disease type 2Y follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Autosomal dominant Charcot-Marie-Tooth disease type 2Y typically begin?

Typical onset of Autosomal dominant Charcot-Marie-Tooth disease type 2Y is adult. Age of onset can vary across affected individuals.