Mobility Difficulties

Most people with Pompe disease experience significant muscle weakness that leads to reduced mobility. This is because the disease often weakens major skeletal muscles, such as those in the legs and hips, that allow people to walk, stand up straight, and keep their balance.

A variety of supportive care options can help manage mobility difficulties:

  • Physical therapy can help improve muscle strength and flexibility and improve mobility
  • Occupational therapy teaches people new ways to perform daily tasks and adapt to changes in their body and environment
  • Use of supportive equipment such as wheelchairs lets people stay mobile and maintain their independence as muscle weakness progresses
  • In some cases, surgery may be necessary to correct bone problems such as scoliosis (a sideways curvature of the spine), which can develop as a result of weak muscles[1]

Because Pompe disease is progressive—it worsens over time—regular check-ups are important for monitoring mobility difficulties and adjusting the plan for care as needed.  There is no one way that Pompe disease affects patients.  Doctors and therapists can work together to develop a personalized plan that works to address specific symptoms, while taking into account physical abilities and limitations.

Learn more about muscle and movement tests 

References

  1. Kishnani PS, Steiner RD, Bali D et al. Pompe disease diagnosis and management guideline. Genet Med 2006 8:267-88.

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