Living with IL10-related early-onset inflammatory bowel disease
A rare immune condition starting in infancy with severe bowel inflammation, infections, and arthritis.
Understanding IL10-related early-onset inflammatory bowel disease
It can cause severe, worsening inflammatory bowel disease with ulcers and fistulas (abnormal openings) around the anus. People may also get infections of the respiratory system, urinary system, and skin, and arthritis with joint pain and stiffness. It can raise the risk of B-cell lymphoma, a type of cancer.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary describes:
- Severe bowel inflammation with ulcers
- Fistulas (abnormal openings) around the anus
- Respiratory, urinary, and skin infections
- Arthritis with joint pain and stiffness
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, allergy and immune system specialists, digestive system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
National Association for Continence (NAFC) and Immune Deficiency Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Allergy and immune system specialists (allergists / immunologists); Digestive system specialists (gastroenterologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: National Association for Continence (NAFC), Immune Deficiency Foundation
- 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 Association for Continence (NAFC) 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 genes cause this condition, which is inherited in an autosomal recessive pattern. A child inherits a changed copy of the gene from each parent.
Also known as: autosomal recessive early-onset inflammatory bowel disease; il10 (interleukin 10) related early-onset inflammatory bowel disease; il10-related early-onset ibd; immune dysregulation-inflammatory bowel disease-arthritis-recurrent infections syndrome; immune dysregulation, inflammatory bowel disease, arthritis, recurrent infection syndrome; interleukin 10 related early-onset inflammatory bowel disease
Patient organizations
- National Association for Continence (NAFC)IL10-related early-onset inflammatory bowel disease · United States
- Immune Deficiency FoundationPrimary immunodeficiency · United States
You are more than your diagnosis
Perspectives from people navigating life with IL10-related early-onset inflammatory bowel disease.
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