In Daisy’s 7th blog she discusses management and treatment of the rare disease, Ehlers-Danlos Syndrome,
Hi everyone. Today I am going to be discussing management and treatment. Although there is no cure for Ehlers Danlos syndrome there are some management strategies and tips to help make like a bit easier.
One of the main problems people with EDS problems are joint problems. Physiotherapy can really help to strengthen the muscles and keep the body being as strong as it can. If you don’t have strong muscles you may experience more joint problems such as dislocations and subluxations. Sometimes, support braces can help. It is important that these are used as infrequently as possible as if you rely on them too often, your muscles can become deconditioned, and your joints get worse.
Exercise is often very difficult with people with Ehlers-Danlos syndrome, although it is really important in keeping the body strong, and managing the condition. Hydrotherapy is a good way of exercising without putting too much stress on your joints. It can also improve your muscles and make your body stronger.
Occupational therapy is a good option for adapting your lifestyle to fit your current needs. Occupational therapy can help make your home more accessible. For example, getting equipment to allow you to sit down whilst doing the washing up, to reduce the stress on your joints. Something like this is so simple, but it makes such a big difference to our lives.
Emotional support for mental health is also vital in managing chronic health conditions. Chronic health conditions can significantly impact an individual’s mental wellbeing, so accessing mental health support is really beneficial to maintain a stable mental state.
To conclude, everyone with Ehlers-Danlos syndrome is different. Every single person, even though they have the same condition, has different needs and different experiences. If you are unsure of anything please just ask! Most of us are happy to teach people about rare disease as so few people know about it, we would like to incresae awareness. Just please be respectful, and you can’t go wrong then!