Living with Primary hyperoxaluria type 3
An inherited condition in which the body handles a substance called glyoxylate abnormally, causing kidney stones in some people and no symptoms in others.
Understanding Primary hyperoxaluria type 3
It usually starts in infancy or childhood. Signs can include blood in the urine, frequent or painful urination, pain and calcium deposits in the kidneys (nephrocalcinosis).
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Kidney stones (calcium oxalate)
- Blood in the urine
- Frequent urination
- Painful or difficult urination
- Pain
- Calcium deposits in the kidneys
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, genetic specialists and kidney specialists.
- 3Consider genetic testing
Changes in HOGA1 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Eye disease specialists (ophthalmologists); Genetic specialists (geneticists); Kidney specialists (nephrologists)
- 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 Oxalosis and Hyperoxaluria Foundation and other patient organizations
- 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
Changes in the HOGA1 gene cause this condition. It is autosomal recessive, meaning a child inherits a changed copy of the gene from each parent.
Also known as: hoga1 primary hyperoxaluria; ph iii; primary hyperoxaluria caused by mutation in hoga1; primary hyperoxaluria type iii
Patient organizations
- Oxalosis and Hyperoxaluria FoundationPrimary hyperoxaluria type 3 · United States
- National Kidney FoundationKidney diseases · United States
- Renal Support NetworkKidney diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Primary hyperoxaluria type 3.
Explore research for Primary hyperoxaluria type 3
Explore actively recruiting Primary hyperoxaluria type 3 studies with HealthSpark.
Find actively recruiting studies for Primary hyperoxaluria type 3 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
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Primary hyperoxaluria type 3 studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Primary hyperoxaluria type 3
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Primary hyperoxaluria type 3 experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.