Symptoms of adult-onset Pompe’s Disease will vary from patient to patient. They are disabling, frustrating, often painful, and unrelenting.
Respiratory muscles will also be affected and patients will need to use a ventilator, to assist with breathing.
Many of us need other aids, such as wheelchairs, walkers, special beds and lifters, to cope with everyday life.
Here is some of what we experience:
- Progressive muscle weakness
- Excessive tiredness
- Walking with a distinct leaning-back (lordosis) - and/or a hip-swinging - gait.
- Problems with walking
- Unable to run
- Poor balance
- Falling often and for no apparent reason
- Struggling, or unable, to climb steps or stairs, even with the support of a handrail
- Unable to rise from a seated position
- Unable to straighten up from a bent-over position
- Difficulty rolling over when in bed
- Difficulty in raising arms, as in combing hair or hanging washing on the line
- Struggling to get into, or out of, a car
- Difficulties with eating
- Shortness of breath - Breathing difficulties
- When sleeping, restlessness and waking up many times through the night
