Living with Immunodeficiency with thymoma
A rare adult-onset immune condition (Good syndrome) with a benign thymus tumor and frequent infections.
Understanding Immunodeficiency with thymoma
It is suspected when a person has low antibody levels (hypogammaglobulinemia) and low B cells along with a thymoma on a chest X-ray. People get frequent infections of the sinuses and lungs, including some from germs that rarely harm healthy people.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Cough
- Trouble breathing
- Frequent urinary tract infections
- Droopy upper eyelid
- Weakness that comes with fatigue
- Voice changes
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 allergy and immune system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Immune Deficiency Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Allergy and immune system specialists (allergists / immunologists)
- Expert care
- Expert lists: 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 Immune Deficiency 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 of Good syndrome remains unknown.
Also known as: good syndrome; good's syndrome; thymoma with hypogammaglobulinemia; thymoma-immunodeficiency; thymoma-immunodeficiency syndrome
Patient organizations
- Immune Deficiency FoundationImmunodeficiency with thymoma · United States
- Jeffrey Modell FoundationImmunodeficiency with thymoma · United States
You are more than your diagnosis
Perspectives from people navigating life with Immunodeficiency with thymoma.
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