Corneal intraepithelial dyskeratosis-palmoplantar hyperkeratosis-laryngeal dyskeratosis syndrome

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ORPHA:352662OMIM:615225Q82.8
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Overview

Corneal intraepithelial dyskeratosis-palmoplantar hyperkeratosis-laryngeal dyskeratosis syndrome is an extremely rare genetic condition that affects three main areas of the body: the eyes, the skin of the palms and soles, and the voice box (larynx). The term 'dyskeratosis' refers to abnormal development of the outer layer of cells (epithelium), while 'hyperkeratosis' means thickening of the skin. In this condition, the clear front surface of the eye (cornea) develops abnormal cell growth that can cause eye irritation, redness, and vision problems. The skin on the palms of the hands and soles of the feet becomes unusually thick and tough, which can sometimes be uncomfortable or cause cracking. The lining of the larynx (voice box) also develops abnormal tissue changes, which may lead to hoarseness or other voice difficulties. Because this syndrome is so rare, treatment is mainly focused on managing symptoms. Eye drops or other eye treatments may help with corneal symptoms, dermatological care can address the thickened skin, and ear-nose-throat specialists can monitor and manage laryngeal changes. There is currently no cure for this condition, and management requires a team of different specialists working together.

Key symptoms:

Red, irritated eyesWhite or grayish plaques on the surface of the eyeBlurred or decreased visionThickened skin on the palms of the handsThickened skin on the soles of the feetCracking or peeling of thickened skinHoarseness or changes in voiceDifficulty with voice projectionEye tearing or wateringSensitivity to lightDiscomfort when walking due to thick soles

Inheritance

Autosomal dominant

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

Age of Onset

Childhood

Begins in childhood, roughly ages 1 to 12

Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Corneal intraepithelial dyskeratosis-palmoplantar hyperkeratosis-laryngeal dyskeratosis syndrome.

View clinical trials →

No actively recruiting trials found for Corneal intraepithelial dyskeratosis-palmoplantar hyperkeratosis-laryngeal dyskeratosis syndrome at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Corneal intraepithelial dyskeratosis-palmoplantar hyperkeratosis-laryngeal dyskeratosis syndrome community →

No specialists are currently listed for Corneal intraepithelial dyskeratosis-palmoplantar hyperkeratosis-laryngeal dyskeratosis syndrome.

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 Corneal intraepithelial dyskeratosis-palmoplantar hyperkeratosis-laryngeal dyskeratosis syndrome.

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Community

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Latest news about Corneal intraepithelial dyskeratosis-palmoplantar hyperkeratosis-laryngeal dyskeratosis syndrome

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Caregiver Resources

NORD Caregiver Resources

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

Mental Health Support

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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.How often should my child's eyes, skin, and voice box be checked?,Are there specific eye drops or skin treatments that work best for this condition?,What signs should I watch for that would need urgent medical attention?,Is genetic testing available to confirm the diagnosis, and should other family members be tested?,Will the corneal changes get worse over time, and could they lead to significant vision loss?,Are there any clinical trials or research studies we could participate in?,What accommodations might be helpful at school or work?

Common questions about Corneal intraepithelial dyskeratosis-palmoplantar hyperkeratosis-laryngeal dyskeratosis syndrome

What is Corneal intraepithelial dyskeratosis-palmoplantar hyperkeratosis-laryngeal dyskeratosis syndrome?

Corneal intraepithelial dyskeratosis-palmoplantar hyperkeratosis-laryngeal dyskeratosis syndrome is an extremely rare genetic condition that affects three main areas of the body: the eyes, the skin of the palms and soles, and the voice box (larynx). The term 'dyskeratosis' refers to abnormal development of the outer layer of cells (epithelium), while 'hyperkeratosis' means thickening of the skin. In this condition, the clear front surface of the eye (cornea) develops abnormal cell growth that can cause eye irritation, redness, and vision problems. The skin on the palms of the hands and soles

How is Corneal intraepithelial dyskeratosis-palmoplantar hyperkeratosis-laryngeal dyskeratosis syndrome inherited?

Corneal intraepithelial dyskeratosis-palmoplantar hyperkeratosis-laryngeal dyskeratosis syndrome follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Corneal intraepithelial dyskeratosis-palmoplantar hyperkeratosis-laryngeal dyskeratosis syndrome typically begin?

Typical onset of Corneal intraepithelial dyskeratosis-palmoplantar hyperkeratosis-laryngeal dyskeratosis syndrome is childhood. Age of onset can vary across affected individuals.