Living with Primary progressive aphasia
A brain condition in adults that slowly takes away the ability to speak and understand language.
Understanding Primary progressive aphasia
People lose the ability to understand or express speech (aphasia). It is a type of frontotemporal dementia and has three types: progressive non-fluent aphasia, semantic dementia and logopenic progressive aphasia. It is caused by tissue loss (atrophy) in the part of the brain that produces language. It usually begins in adulthood.
Signs & symptoms
GARD doesn't list a symptom list for this condition. It describes this:
- Progressive loss of language abilities
- Trouble understanding speech
- Trouble expressing speech
- Shrinking of the language area of the brain
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
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)
- 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
PPA is caused by loss of tissue in the language area of the brain. In some cases this is caused by changes in the GRN gene, which is autosomal dominant, meaning one changed copy of the gene is enough.
Also known as: mesulam syndrome; ppa
Patient organizations
- The Association for Frontotemporal DegenerationPrimary progressive aphasia · United States
- National Aphasia AssociationPrimary progressive aphasia · United States
- Aphasia Center of MainePrimary progressive aphasia · United States
You are more than your diagnosis
Perspectives from people navigating life with Primary progressive aphasia.
Explore research for Primary progressive aphasia
Explore actively recruiting Primary progressive aphasia studies with HealthSpark.
Find actively recruiting studies for Primary progressive aphasia with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Primary progressive aphasia studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Primary progressive aphasia
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Primary progressive aphasia experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.