Living with Spigelian hernia-cryptorchidism syndrome
A rare condition present at birth with a hernia in the belly wall and undescended testes in baby boys.
Understanding Spigelian hernia-cryptorchidism syndrome
Fat, belly lining or organs push through a weak spot in the abdominal wall (a Spigelian hernia), on one or both sides. In newborn boys, an undescended testis is usually found in or just under the hernia sac. A normal passage for the testis in the groin may be missing. It is noticed in the newborn and infant period.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Based on its summary, features include:
- Bulge in the belly wall (Spigelian hernia)
- Hernia on one or both sides
- Undescended testis in baby boys
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- 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 rare disease patient organizations for support
- 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
GARD doesn't describe a cause for this condition yet. It describes it as a development difference that happens before birth.
Also known as: spigelian hernia with cryptorchidism syndrome
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Spigelian hernia-cryptorchidism syndrome.
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