Exercise and Physical Activity in Alström Syndrome

Regular physical activity benefits people with Alström Syndrome — improving glucose control, supporting cardiovascular health, helping mood, maintaining muscle and bone, and protecting against the metabolic complications that develop over time. The challenge is adapting exercise for the specific issues Alström presents: vision loss, cardiomyopathy, scoliosis, photophobia. With sensible adaptations, most children and adults with Alström can be active in ways that work for them.

For people with Alström, regular movement helps with:¹

• Insulin sensitivity — improving glucose control even at the same weight
• Cardiovascular health — supporting cardiac function within safe limits
• Bone density — reducing osteoporosis risk
• Muscle mass — supporting metabolism and function
• Mood and energy — physical activity is one of the most evidence-based interventions for depression
• Sleep quality
• Social connection — sports, classes, and group activities create community

Anyone with cardiomyopathy in their history needs cardiology input on exercise. General principles:

• Moderate-intensity aerobic activity is encouraged for most patients
• Heavy resistance training and very high-intensity exercise need specific clearance
• Symptoms during exercise (significant breathlessness, chest pain, dizziness) warrant pause and assessment
• Cardiac rehabilitation programs provide supervised exercise for those who need extra support

Most children with recovered infant cardiomyopathy can participate in school PE and most age-appropriate activities. Restrictions are determined by the child's specific cardiologist and may evolve over time.

Vision changes affect what's practical:

Activities that work well throughout vision changes

• Swimming in a known pool
• Stationary bike or recumbent bike
• Treadmill at known speeds and inclines
• Yoga and stretching
• Walking with a partner or on a known route
• Tandem cycling with a sighted partner
• Rowing machines

Activities that need significant adaptation

• Running outdoors — possible with a sighted guide tether
• Team sports — many adapted versions exist (goalball, beep baseball, blind tennis)
• Group fitness classes — works with a familiar instructor and consistent routine
• Hiking — possible with a partner on known trails

Activities that may not be feasible

• Most independent outdoor exercise in unfamiliar areas
• Activities requiring rapid visual reaction (typical tennis, racquetball)
• High-traffic-area cycling independently

Several adapted sports specifically serve athletes with vision loss:

• Goalball — ball with bells, played indoors with eye-shades
• Beep baseball — adapted baseball with auditory beep ball and base
• Blind tennis / sound tennis — ball with bells inside
• Para-sports — at competitive levels through Paralympic pathways
• Adapted swimming with audio cues for wall approach
• Tandem cycling — many regions have organized clubs

Patient organizations and disability sports organizations can connect families with local programs.

Children with Alström benefit from:

• School PE participation with appropriate accommodations
• Movement built into daily life — walking, playing
• Family activities that include them — adapted for their needs
• Adapted PE specialist services through the IEP if needed

The biggest risk is well-meaning exclusion — being kept on the sidelines for safety and ending up sedentary and isolated. The right approach is to find what works rather than to exclude.

Adult activity recommendations:

• 150 minutes of moderate aerobic activity per week is the standard guideline
• Resistance training 2–3 times per week for muscle and bone
• Balance and flexibility work especially important with vision changes
• Activities you enjoy — sustainability matters more than perfection

For people with significant photophobia:

• Indoor activities or shaded outdoor activities
• Tinted lenses or sunglasses during outdoor exercise
• Wide-brimmed hat or visor
• Early morning or evening for outdoor activity to avoid peak sun

Exercise affects glucose:

• Aerobic activity typically lowers glucose
• Risk of hypoglycemia in those on insulin or sulfonylureas
• Adjustments to medications may be needed for prolonged or intense activity
• Carrying fast-acting carbs is essential for those at risk of hypoglycemia
• CGM particularly useful for tracking glucose response to activity

Discuss with your endocrinologist about medication adjustments for planned exercise.

For those with scoliosis or other musculoskeletal findings:

• A physical therapist can provide exercise prescriptions adapted to spinal or postural issues
• Low-impact activities (swimming, recumbent biking) are often comfortable
• Building core strength supports the spine
• Avoid activities that worsen spinal pain

• Type 2 Diabetes in Alström Syndrome
• Childhood Obesity in Alström Syndrome
• Living With Heart Disease as an Adult With Alström
• Building Independence in a Child With Alström Syndrome
• Adult Life With Alström Syndrome

April 30, 2026.