Is it advisable to do exercise when affected by Hajdu-Cheney Syndrome? Which activities would you suggest and how intense should they be?

Yes, exercise is generally recommended for individuals with Hajdu-Cheney Syndrome, as it helps maintain functional mobility and bone health, provided it is approached with caution and medical supervision. Because Hajdu-Cheney Syndrome is characterized by progressive bone loss (acro-osteolysis) and joint hypermobility, exercise programs must be tailored to protect fragile skeletal structures while building supporting muscle strength.

Is exercise safe for Hajdu-Cheney Syndrome patients?

Physical activity is beneficial for managing the secondary effects of Hajdu-Cheney Syndrome, such as muscle weakness and joint instability. While the condition involves fragile bones and potential fractures, total inactivity can lead to muscle atrophy and further joint degradation. With 5 members in the DiseaseMaps community currently navigating this, we emphasize that movement should be low-impact and centered on stability.

What types of exercise are recommended?

Safe movement for those with Hajdu-Cheney Syndrome focuses on joint protection and controlled motion. We suggest the following activities, performed with medical clearance:

• Hydrotherapy or Swimming: Water provides buoyancy, which reduces the load on joints while allowing for safe resistance training.


• Gentle Resistance Training: Using light resistance bands to build muscle around unstable joints, which helps stabilize the skeletal frame.


• Low-impact walking: Consistent, gentle movement on flat, even surfaces to maintain cardiovascular health.


• Modified Yoga or Pilates: Focus on core stability and range of motion, avoiding extreme positions that put stress on the hands or feet, which are often affected in Hajdu-Cheney Syndrome.

Which activities should be avoided?

Individuals with Hajdu-Cheney Syndrome must avoid high-impact activities like running, jumping, or contact sports that pose a high risk of bone fracture. Because Hajdu-Cheney Syndrome often involves acro-osteolysis (the resorption of terminal phalanges), avoid any exercise that places excessive weight or repetitive pressure on the hands and feet.

How can I safely start an exercise program?

Always begin by consulting a physical therapist who specializes in connective tissue disorders or rare skeletal conditions. Start with a "pacing" approach: perform short, 5-10 minute sessions and monitor for pain or fatigue. If you experience increased joint pain, scale back immediately. Hajdu-Cheney Syndrome management requires a long-term, gradual approach rather than intense, sporadic bursts of activity.

Next steps

• Schedule an evaluation with a physical therapist familiar with skeletal dysplasia or rare bone disorders.


• Consult your rheumatologist or geneticist to assess current bone density before starting new routines.


• Join the DiseaseMaps community to share experiences and coping strategies with others living with Hajdu-Cheney Syndrome.

Medical disclaimer: This information is for educational purposes only and does not replace professional medical advice, diagnosis, or treatment from your healthcare provider.

References

• NIH Genetic and Rare Diseases Information Center (GARD) - Hajdu-Cheney Syndrome


• Orphanet: Acro-osteolysis with osteoporosis and changes in skull and mandible (Hajdu-Cheney Syndrome)


• OMIM (Online Mendelian Inheritance in Man) - #102500 Hajdu-Cheney Syndrome