Salford Royal Hospital has introduced virtual exercise classes for patients with an extremely rare disease.
Pompe disease is an inherited and rare genetic condition that causes the muscle cells to weaken and impacts a person’s normal ability to function.
The disease may impact on a patient’s range of movement and lead to problems with their walking.
Metabolic physiotherapists at Salford Royal set up the online classes five months ago and given how rare the disease is, patients can often have problems accessing local services for support with physiotherapy and exercise.
Emma Sarrecchia, metabolic physiotherapist at Salford Royal, said: “We see patients from the whole of the North of England and Northern Ireland. A big challenge we face is working with so many patients who live outside of our local area, who cannot easily come to us for in-person assessments.
“We have recently introduced a virtual exercise class to reach our patients with Pompe disease more regularly and are exploring ways for patients to complete their pulmonary function tests from home. The patients are really enjoying the virtual classes.”
Salford Royal is one of five adult metabolic centres in England which can prescribe the lifelong Enzyme Replacement Treatment (ERT) for people with Pompe disease.
Nationally there are around 200 patients with Pompe disease.
‘It brought home the feeling of not being alone’ – Patient feedback
Charlie, one of those joining the classes, said: “It's more than just exercise, it's a chance to meet up with fellow patients and talk about our condition and the effect our treatment has on our lives. Plus, it feels good to do an hour's exercise with good people.
“Pompe disease is very rare and people often don't grasp it. Every time I talk about my condition people start saying oh so it's like diabetes then, even though diabetes is to do with insulin.”
Peter, another patient who attends, said: “Thank you for today it was good to see the faces of others within the Pompe community. It brought home a feeling of not being alone with the illness. This was the first time that I have met someone else with Pompe disease.”
Other members of the multidisciplinary team attend the classes to give short education sessions and answer any questions patients may have.
If you are interested in finding out more, you can contact the team by emailing: mhmu@nca.nhs.uk