Living with Alveolar capillary dysplasia with pulmonary venous misalignment
A disorder of lung development in newborns in which tiny blood vessels in the air sacs don't form properly, making breathing hard.
Understanding Alveolar capillary dysplasia with pulmonary venous misalignment
It affects the tiny air sacs (alveoli) and the small blood vessels (capillaries) in them. The number of capillaries is greatly reduced, and the existing ones sit in the wrong place, which makes it hard for oxygen and carbon dioxide to be exchanged. The veins that carry blood from the lungs to the heart are also in the wrong position. It starts in newborns and infants.
Signs & symptoms
Symptoms vary from baby to baby. GARD lists these among the most common:
- Trouble breathing
- High blood pressure in the lungs' blood vessels
- Intestines twisted from birth (malrotation)
- Open duct between heart vessels (patent ductus arteriosus)
- Underdeveloped left side of the heart
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 genetic specialists and lung and breathing specialists.
- 3Consider genetic testing
Changes in FOXF1 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Children's Interstitial Lung Disease Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Lung and breathing specialists (pulmonologists)
- Expert care
- Expert lists: Children's Interstitial Lung Disease 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 Children's Interstitial Lung Disease 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 FOXF1 gene cause this condition. It is autosomal dominant, so a changed copy of the gene from one parent can be enough.
Also known as: acdmpv; alveolar capillary dysplasia; alveolar capillary dysplasia with misalignment of pulmonary veins; alveolar capillary dysplasia with misalignment of pulmonary veins and other congenital anomalies; alveolar capillary dysplasia with misalignment of pulmonary vessels; congenital alveolar capillary dysplasia
Patient organizations
- Children's Interstitial Lung Disease FoundationAlveolar capillary dysplasia with pulmonary venous misalignment · United States
- Alveolar Capillary Dysplasia AssociationAlveolar capillary dysplasia with pulmonary venous misalignment · United States
You are more than your diagnosis
Perspectives from people navigating life with Alveolar capillary dysplasia with pulmonary venous misalignment.
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