Living with Onchocerciasis
A tropical parasitic disease spread by black flies, causing itchy skin problems and eye disease sometimes called river blindness.
Understanding Onchocerciasis
The worms live under the skin in nodules and produce larvae found throughout the body, especially in the skin and eyes. Skin symptoms include itching, rash, scarring, and thickened skin. Eye infection, known as river blindness, can cause itchy, red, light-sensitive eyes and can lead to vision loss. About 90% of cases occur in Africa.
Signs & symptoms
Symptoms vary from person to person. GARD describes these in its summary:
- Itching, sometimes very severe
- Rash with small pimples
- Thickened, leathery skin
- Patchy lighter skin (leopard skin)
- Itchy, red, light-sensitive eyes
- Vision loss from eye infection
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 eye disease specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Eye disease specialists (ophthalmologists)
- 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 Onchocerciasis Elimination Program for the Americas
- 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
The parasitic worm Onchocerca volvulus causes this disease, passed on by the bite of an infected black fly. Repeated bites increase the number of worms and larvae.
Also known as: infection by onchocerca volvulus; infection caused by onchocerca volvulus; onchocerca volvulus infection; onchocercosis; river blindness; robles' disease
Patient organizations
- Onchocerciasis Elimination Program for the AmericasOnchocerciasis · United States
You are more than your diagnosis
Perspectives from people navigating life with Onchocerciasis.
Explore research for Onchocerciasis
Explore actively recruiting Onchocerciasis studies with HealthSpark.
Find actively recruiting studies for Onchocerciasis 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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