Living with Diffuse idiopathic pulmonary neuroendocrine cell hyperplasia
A rare, poorly understood lung condition in which certain hormone-making cells overgrow, sometimes with cough or shortness of breath.
Understanding Diffuse idiopathic pulmonary neuroendocrine cell hyperplasia
These are pulmonary neuroendocrine cells, which get signals from nerve cells. Some people have no obvious symptoms. Others have signs of airway disease. It is considered a precancerous condition, as studies suggest it may be a forerunner of pulmonary carcinoid tumors. GARD lists onset in adulthood and older adulthood.
Signs & symptoms
Some people have no symptoms. When present, GARD lists these:
- Long-lasting dry cough
- Shortness of breath with activity
- Wheezing
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 and lung and breathing specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Neuroendocrine Tumor Research Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Lung and breathing specialists (pulmonologists)
- Expert care
- Expert lists: Neuroendocrine Tumor Research 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 Neuroendocrine Tumor Research Foundation
- 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 the cause of DIPNECH is currently unknown.
Also known as: dip-nech; dipnech; dipnech - diffuse idiopathic pulmonary neuroendocrine cell hyperplasia
Patient organizations
- Neuroendocrine Tumor Research FoundationDiffuse idiopathic pulmonary neuroendocrine cell hyperplasia · United States
You are more than your diagnosis
Perspectives from people navigating life with Diffuse idiopathic pulmonary neuroendocrine cell hyperplasia.
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