Living with Autosomal systemic lupus erythematosus type 16
An inherited form of lupus, a condition in which the immune system attacks the body's own tissues.
Understanding Autosomal systemic lupus erythematosus type 16
Lupus is an autoimmune disease, which means the immune system attacks the body's own tissues. It can involve the skin, joints, kidneys, lungs, nervous system, and blood-forming system. About a third of people with lupus develop kidney disease. Symptoms come and go in flares and quiet times. Onset for this type is listed as childhood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Lupus (systemic lupus erythematosus)
- Kidney inflammation (lupus nephritis)
- Low levels of complement C3 in the blood
- Low levels of complement C4 in the blood
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 and genetic specialists.
- 3Consider genetic testing
Changes in DNASE1L3 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
- autoimmune and inflammatory disease specialists (rheumatologists); Genetic specialists (geneticists)
- 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 Lupus Foundation of America
- 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
It is caused by changes in the DNASE1L3 gene. GARD lists both autosomal dominant and autosomal recessive inheritance.
Also known as: autosomal sle; autosomal systemic lupus erythematosus; familial sle; familial systemic lupus erythematosus; sleb16; systemic lupus erythematosus 16
Patient organizations
- Lupus Foundation of AmericaAutosomal systemic lupus erythematosus type 16 · United States
You are more than your diagnosis
Perspectives from people navigating life with Autosomal systemic lupus erythematosus type 16.
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