Living with Kennedy disease
A slowly worsening nerve and muscle condition, mostly in adult males, with muscle weakness and wasting and some hormone-related changes.
Understanding Kennedy disease
It mainly affects adult males. Early symptoms may include tremor, muscle cramps, and muscle twitching, followed by weakness and wasting. Other symptoms are enlarged male breasts (gynecomastia), smaller testicles, and reduced fertility due to mild androgen insensitivity.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Muscle weakness and wasting
- Tremor, cramps, and muscle twitching
- Trouble speaking clearly (dysarthria)
- Enlarged male breasts (gynecomastia)
- Reduced fertility
- Walking changes
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, genetic specialists, hormone specialists and urinary and male reproductive system specialists.
- 3Consider genetic testing
Changes in AR 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
Kennedy's Disease Association, Muscular Dystrophy Association and Resolve: The National Infertility Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists); Urinary and male reproductive system specialists (urologists)
- Expert care
- Expert lists: Kennedy's Disease Association, Muscular Dystrophy Association, Resolve: The National Infertility 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 Kennedy's Disease 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
Changes in the androgen receptor (AR) gene cause this condition. It is X-linked recessive, meaning the gene is on the X chromosome.
Also known as: kennedy spinal and bulbar muscular atrophy; kennedy's disease; sbma; smax1; spinal and bulbar muscular atrophy; spinal and bulbar muscular atrophy of kennedy, x-linked recessive
Patient organizations
- Kennedy's Disease AssociationKennedy disease · United States
- Cure SMAKennedy disease · United States
- Muscular Dystrophy AssociationKennedy disease · United States
- Resolve: The National Infertility AssociationInfertility · United States
You are more than your diagnosis
Perspectives from people navigating life with Kennedy disease.
Explore research for Kennedy disease
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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