Living with Global developmental delay - lung cysts - overgrowth - Wilms tumor syndrome
A rare genetic overgrowth syndrome with developmental delay, lung cysts, enlarged kidneys, and a kidney tumor called Wilms tumor.
Understanding Global developmental delay - lung cysts - overgrowth - Wilms tumor syndrome
Features include developmental delay, large size at birth with continued overgrowth, cysts in both lungs, enlarged kidneys, and Wilms tumor in both kidneys. People may also have a large head, a prominent forehead, and a small lower jaw. Other features can include hernias and autistic behavior. It is usually noticed in infancy.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Delays in overall development
- Overgrowth, with large size at birth
- Cysts in the lungs
- Enlarged kidneys and Wilms tumor
- Large head (macrocephaly) and prominent forehead
- Autism
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 cancer specialists, genetic specialists, hormone specialists and kidney specialists.
- 3Consider genetic testing
Changes in DICER1 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
- Cancer specialists (oncologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists); Kidney specialists (nephrologists)
- 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
Changes in the DICER1 gene are listed as the cause of this condition.
Also known as: global developmental delay-lung cysts-overgrowth-wilms tumor syndrome; global developmental delay, lung cysts, overgrowth, and wilms tumor; global developmental delay, lung cysts, overgrowth, and wilms tumour; global developmental delay, lung cysts, overgrowth, wilms tumor syndrome; glow; glow (global developmental delay, lung cysts, overgrowth, wilms tumor) syndrome
Patient organizations
- National Kidney FoundationKidney diseases · United States
- Renal Support NetworkKidney diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Global developmental delay - lung cysts - overgrowth - Wilms tumor syndrome.
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