Background Up to 80% of all Lupus patients experience fatigue and most of them report this as the most severe symptom. One of the major causes of morbidity in SLE patients is chronic, debilitating fatigue, decreasing quality of life, increasing risk of work disability with associated cumbersome healthcare costs.
Several research papers show that the only thing clinically proven to have an effect on Lupus fatigue is moderate exercise. If you tell this to a Lupus patient experiencing fatigue, however, you will find it very difficult to motivate them to exercise. The challenge is to make them realise that exercise does not necessarily mean running a marathon or going to the gym – a little movement goes a long way.
Objectives To get lupus patients to exercise and thereby experience less fatigue/better manage their disease.
Methods Develop an exercise program, that is approved by physiotherapists and leading lupologists, easy to do and inspires Lupus patients to keep active even when they feel exhausted.
Results In collaboration with physical therapists Lupus Europe has developed an exercise program from our own experiences and had it approved by leading European lupologists. The program has five levels; from lying in bed up until being able to run and jump. All exercises can be done at home without training tools. In order to make it accessible we have made five videos, shoving how to do each exercise and five connected pamphlets. The materials will be made available to all Lupus patients on the Lupus Europe web site and YouTube channel free of charge.
Conclusion We have already seen good results within the Lupus community, where people are finding the program easy to use and a help to keeping them active. Our hope is, that doctors/nurses/HCPs will find it a useful tool to help fight fatigue and recommend it to their patients.
Acknowledgements Lupus Europe is mostly financed by Contributions of Industry – GSK, UCB, IDORSIA, Boehringer, Janssen, Leo Pharma.
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