Living with IgG4-related retroperitoneal fibrosis
A condition with inflammation and scar tissue at the back of the abdomen that can block blood vessels and urine flow.
Understanding IgG4-related retroperitoneal fibrosis
It most often appears between ages 40 and 60. The scarring often starts around the aorta and can block blood flow in the lower body. It can also block the ureters, the tubes that carry urine from the kidneys.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Slowly increasing pain in the lower abdomen, back, or side
- Loss of appetite
- Tiredness (fatigue)
- High blood pressure
- Swollen kidney from blocked urine flow (hydronephrosis)
- Swelling or color change in the legs
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 autoimmune and inflammatory disease specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Autoimmune Association may keep lists of experts for this condition.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists)
- Expert care
- Expert lists: Autoimmune Association
- 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 Autoimmune Association 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
GARD doesn't describe a specific cause here. Scar tissue forms around blood vessels and other structures in the back of the abdomen.
Also known as: idiopathic retroperitoneal fibrosis; ormond disease; ormond's disease; retroperitoneal fibrosis; rpf - retroperitoneal fibrosis; sclerosing retroperitonitis
Patient organizations
- Autoimmune AssociationIgG4-related retroperitoneal fibrosis · United States
- National Kidney FoundationIgG4-related retroperitoneal fibrosis · United States
- American Association of Kidney PatientsIgG4-related retroperitoneal fibrosis · United States
You are more than your diagnosis
Perspectives from people navigating life with IgG4-related retroperitoneal fibrosis.
Explore research for IgG4-related retroperitoneal fibrosis
Explore actively recruiting IgG4-related retroperitoneal fibrosis studies with HealthSpark.
Find actively recruiting studies for IgG4-related retroperitoneal fibrosis 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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