Living with Dahlberg-Borer-Newcomer syndrome
A rare genetic syndrome with low parathyroid hormone, kidney problems, swelling from lymph fluid, and heart valve changes.
Understanding Dahlberg-Borer-Newcomer syndrome
It combines low parathyroid hormone (hypoparathyroidism) present from birth, kidney disease, lymph swelling, a heart valve problem, and short fingers and toes. Mild facial differences, extra body hair, and nail changes may also occur. GARD lists onset in childhood and notes no further descriptions since 1993.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Low parathyroid hormone (hypoparathyroidism)
- Kidney disease (nephropathy)
- Swelling from lymph fluid (lymphedema)
- Mitral valve prolapse (heart valve)
- Short fingers and toes (brachydactyly)
- Short stature
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 eye disease specialists, genetic specialists, hormone specialists and skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
National Foundation for Ectodermal Dysplasias may keep lists of experts for this condition.
Care & treatment
- Care team
- Eye disease specialists (ophthalmologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: National Foundation for Ectodermal Dysplasias
- 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 Foundation for Ectodermal Dysplasias 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
GARD says changes in genes cause this condition. It lists both autosomal recessive and X-linked inheritance.
Also known as: dahlberg borer newcomer syndrome; dahlberg syndrome; lymphedema hypoparathyroidism syndrome; lymphedema-hypoparathyroidism syndrome
Patient organizations
- National Foundation for Ectodermal DysplasiasEctodermal dysplasias · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Dahlberg-Borer-Newcomer syndrome.
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