Living with Malakoplakia
A rare long-term inflammatory disease, most often of the urinary and reproductive organs, that can also affect other areas.
Understanding Malakoplakia
It can also appear in the pelvis, bones, lungs, thyroid, digestive tract, skin, and kidneys. Symptoms depend on the area involved. On the skin it may look like a rash with small itchy, red, sometimes fluid-filled areas. People with a weakened immune system have a higher risk. It is described in adults.
Signs & symptoms
Symptoms vary from person to person and depend on the body area. GARD lists these among the most common:
- Abdominal pain
- Blood in the urine (hematuria)
- Painful or difficult urination (dysuria)
- Urgent need to urinate
- Fever
- Skin rash, sores, or itching
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 digestive system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Digestive system specialists (gastroenterologists)
- 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 National Kidney 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
The cause is not well understood. GARD says it may relate to a problem with immune cells called macrophages. E. coli bacteria are the most common type linked to it. GARD lists no gene.
Also known as: malacoplakia
Patient organizations
- National Kidney FoundationMalakoplakia · United States
- American Association of Kidney PatientsMalakoplakia · United States
You are more than your diagnosis
Perspectives from people navigating life with Malakoplakia.
Explore research for Malakoplakia
Explore actively recruiting Malakoplakia studies with HealthSpark.
Find actively recruiting studies for Malakoplakia 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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