Living with Frontotemporal dementia and/or amyotrophic lateral sclerosis 7
A rare inherited brain condition in adults, caused by changes in the CHMP2B gene, which can cause dementia, ALS, or both.
Understanding Frontotemporal dementia and/or amyotrophic lateral sclerosis 7
People may have symptoms of amyotrophic lateral sclerosis (ALS), frontotemporal dementia (FTD), or both. ALS symptoms include muscle loss and weakness in the arms and legs, trouble swallowing, and breathing problems. FTD symptoms include changes in behavior and personality, memory loss, and trouble controlling emotions or actions.
Signs & symptoms
GARD doesn't list a separate symptom list. Its summary describes:
- Muscle loss and weakness in the arms and legs
- Trouble swallowing
- Breathing problems
- Changes in behavior and personality
- Memory loss
- Trouble controlling emotions or actions
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 CHMP2B gene cause it. It is autosomal dominant, which means a single changed copy of the gene is enough.
Also known as: amyotrophic lateral sclerosis 17; amyotrophic lateral sclerosis caused by mutation in chmp2b; amyotrophic lateral sclerosis, chmp2b-related; chmp2b amyotrophic lateral sclerosis; chmp2b-related amyotrophic lateral sclerosis; chmp2b-related frontotemporal dementia
Patient organizations
- The Association for Frontotemporal DegenerationFrontotemporal dementia and/or amyotrophic lateral sclerosis 7 · United States
You are more than your diagnosis
Perspectives from people navigating life with Frontotemporal dementia and/or amyotrophic lateral sclerosis 7.
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