Living with Cross syndrome
A rare genetic condition with pale skin and eyes, eye differences, slow growth, and nervous system problems from birth.
Understanding Cross syndrome
People can have eye differences such as clouding of the cornea or lens, an outward-turned eyelid, and eye shaking (nystagmus). They also have slow growth, intellectual disability, and progressive nervous system problems such as stiffness in all four limbs, brisk reflexes, and writhing movements. The picture varies, and can include urinary tract differences and a Dandy-Walker brain malformation.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Low pigment in the skin and eyes
- Cloudy lens (cataract) or cornea
- Slow growth
- Intellectual disability
- Muscle stiffness (spasticity)
- Balance problems (ataxia)
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, eye disease specialists, genetic specialists and gum, teeth and mouth specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Eye disease specialists (ophthalmologists); Genetic specialists (geneticists); Gum, teeth and mouth specialists (odontologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 Children's Skin Disease Foundation
- 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
GARD says changes in genes cause this condition. It is autosomal recessive, meaning a child inherits a changed copy of the gene from each parent. GARD doesn't name a gene.
Also known as: kramer syndrome; oculocerebral hypopigmentation syndrome cross type; oculocerebral hypopigmentation syndrome, cross type; oculocerebral syndrome with hypopigmentation; oculocerebral-hypopigmentation syndrome
Patient organizations
- Children's Skin Disease FoundationSkin diseases · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Cross syndrome.
Explore research for Cross syndrome
Explore actively recruiting Cross syndrome studies with HealthSpark.
Find actively recruiting studies for Cross syndrome with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- 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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