Living with Frontotemporal dementia and/or amyotrophic lateral sclerosis 1
A rare brain and nerve condition caused by changes in the C9ORF72 gene, which can cause dementia, ALS, or both, starting in adulthood.
Understanding Frontotemporal dementia and/or amyotrophic lateral sclerosis 1
It can show as frontotemporal dementia (FTD), as amyotrophic lateral sclerosis (ALS), or both. FTD symptoms include changes in personality, behavior, and judgment, trouble communicating, and sometimes hallucinations or delusions. ALS symptoms include abnormal muscle tone, muscle twitches and cramps, trouble walking, and problems with swallowing and speech. Symptoms start in adulthood and vary widely, even within a family.
Signs & symptoms
GARD lists these among the less common findings, and we don't have enough information about how common they are:
- Changes in personality and behavior
- Trouble communicating
- Muscle twitches and cramps
- Trouble walking
- Problems with swallowing and speech
- Hallucinations or delusions
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
ALS Association and 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: ALS Association, 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 ALS Association 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
It is caused by a repeat expansion in the C9ORF72 gene, in which a six-letter piece of DNA repeats many more times than usual. It is autosomal dominant, which means most people inherit it from one parent.
Also known as: alsftd; amyotrophic lateral sclerosis and/or frontotemporal dementia; c9orf72 frontotemporal dementia with motor neuron disease; frontotemporal dementia and/or amyotrophic lateral sclerosis type 1; frontotemporal dementia and/or motor neuron disease; frontotemporal dementia with motor neuron disease 1
Patient organizations
- ALS AssociationFrontotemporal dementia and/or amyotrophic lateral sclerosis 1 · United States
- The Association for Frontotemporal DegenerationFrontotemporal dementia and/or amyotrophic lateral sclerosis 1 · United States
You are more than your diagnosis
Perspectives from people navigating life with Frontotemporal dementia and/or amyotrophic lateral sclerosis 1.
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