Living with Pure autonomic failure
A nerve condition that causes blood pressure to drop sharply on standing, usually starting in midlife.
Understanding Pure autonomic failure
It usually affects only the nerves outside the brain and spinal cord. Symptoms begin in midlife, though they can start earlier, and tend to worsen over time. The main symptom is a sudden drop in blood pressure on standing (orthostatic hypotension). Sometimes PAF can lead to other conditions such as Parkinson's disease or multiple system atrophy.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Blood pressure drop when standing
- Dizziness or lightheadedness
- Fainting
- Blurry vision and weakness
- Bladder problems and constipation
- Lack of sweating
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 brain and nervous system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Dysautonomia International may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists)
- Expert care
- Expert lists: Dysautonomia International
- 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 Dysautonomia International 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 the cause isn't known. Symptoms come from abnormal protein buildups called Lewy bodies in autonomic nerve cells, which reduce norepinephrine and cause low blood pressure.
Also known as: autonomic failure; bradbury eggleston syndrome; bradbury-eggleston syndrome; idiopathic orthostatic hypotension; paf; pure dysautonomia
Patient organizations
- Dysautonomia InternationalPure autonomic failure · United States
- Dysautonomia Support NetworkPure autonomic failure · United States
You are more than your diagnosis
Perspectives from people navigating life with Pure autonomic failure.
Explore research for Pure autonomic failure
Explore actively recruiting Pure autonomic failure studies with HealthSpark.
Find actively recruiting studies for Pure autonomic failure with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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