Living with Wolfram-like syndrome
A rare endocrine condition with diabetes in adulthood, hearing loss that starts in childhood, and vision nerve loss.
Understanding Wolfram-like syndrome
Hearing loss usually begins in the first ten years of life, mostly for low to moderate pitches. Optic atrophy is damage to the nerve from eye to brain, starting in youth. Anxiety, depression, hallucinations, and sleep problems are reported rarely. Unlike Wolfram syndrome, GARD says endocrine and heart findings are not reported.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Diabetes mellitus
- Hearing loss from the inner ear
- Optic atrophy
- Glaucoma
- Anxiety or depression
- Poor balance and coordination
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 ear, nose, and throat specialists, eye disease specialists, genetic specialists and hormone specialists.
- 3Consider genetic testing
Changes in WFS1 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
Snow Foundation For Wolfram Syndrome Research may keep lists of experts for this condition.
Care & treatment
- Care team
- Ear, nose, and throat specialists (otolaryngologists); Eye disease specialists (ophthalmologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists)
- Expert care
- Expert lists: Snow Foundation For Wolfram Syndrome Research
- 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 Snow Foundation For Wolfram Syndrome Research
- 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
Wolfram-like syndrome is caused by changes in the WFS1 gene. A child can get it from one parent with the changed gene (autosomal dominant).
Also known as: hearing loss, progressive, with optic atrophy and/or impaired glucose regulation
Patient organizations
- Snow Foundation For Wolfram Syndrome ResearchWolfram-like syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Wolfram-like syndrome.
Explore research for Wolfram-like syndrome
Explore actively recruiting Wolfram-like syndrome studies with HealthSpark.
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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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