Living with GRN-related frontotemporal lobar degeneration with Tdp43 inclusions
A form of frontotemporal dementia caused by changes in the GRN gene, mainly affecting behavior, social skills, and language.
Understanding GRN-related frontotemporal lobar degeneration with Tdp43 inclusions
It varies from person to person, but usually involves decline in social behavior or language rather than memory or movement. Brain cells show clumps of a protein called TDP-43 (TARDBP-positive inclusions).
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Trouble finding words (aphasia)
- Agitation
- Loss of inhibition
- Changes in sexual behavior
- Trouble with skilled movements (apraxia)
- Shrinking of the outer layer 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
Your doctor may refer you to a specialist who knows rare conditions.
- 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 may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: The Association for Frontotemporal Degeneration
- 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
- 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 GRN gene cause this condition. It is inherited in an autosomal dominant way, which means one changed copy of the gene is enough.
Also known as: dementia, hereditary dysphasic disinhibition; frontotemporal dementia with tdp43 inclusions, grn-related; frontotemporal lobar degeneration with ubiquitin-positive inclusions; ftd2; ftld-tdp, grn-related; grn-related frontotemporal dementia
Patient organizations
- The Association for Frontotemporal DegenerationGRN-related frontotemporal lobar degeneration with Tdp43 inclusions · United States
You are more than your diagnosis
Perspectives from people navigating life with GRN-related frontotemporal lobar degeneration with Tdp43 inclusions.
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