Living with Primary progressive non fluent aphasia
A form of frontotemporal dementia in adults that makes speech slow and effortful and affects grammar, reading and writing.
Understanding Primary progressive non fluent aphasia
People have trouble with grammar, laborious speech, reading (alexia) and writing (agraphia), and often have trouble planning the movements of speech. Understanding language is relatively preserved. It usually starts in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Slow, effortful speech
- Trouble with grammar
- Trouble finding words
- Trouble reading (alexia)
- Memory problems
- Anxiety and low mood
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 and genetic specialists.
- 3Consider genetic testing
Changes in PSEN1 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
The Association for Frontotemporal Degeneration and National Aphasia Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: The Association for Frontotemporal Degeneration, National Aphasia Association
- 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 The Association for Frontotemporal Degeneration 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 lists the PSEN1 gene for this condition but doesn't describe an inheritance pattern. Loss of brain tissue in the frontal and temporal lobes is part of the condition.
Also known as: agramatic variant of ppa; agramatic variant of primary progressive aphasia; non-fluent variant ppa; primary progressive nonfluent aphasia; progressive non-fluent aphasia
Patient organizations
- The Association for Frontotemporal DegenerationPrimary progressive non fluent aphasia · United States
- National Aphasia AssociationPrimary progressive non fluent aphasia · United States
- Aphasia Center of MainePrimary progressive non fluent aphasia · United States
You are more than your diagnosis
Perspectives from people navigating life with Primary progressive non fluent aphasia.
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