Please note, this is my personal experience of living with Ehlers Danlos Syndrome, the treatments and path to diagnosis and should therefore not be taken as medical advice. I am aware that some complaints are only indirect EDS symptoms but these also contribute to the overall picture and my experience with the condition, EDS.
For many EDS patients, orthoses are a necessity. From hand and fingers, to back, ankles and legs. Doctors and therapists are often reluctant and see more disadvantages than advantages in the use of movement-limiting aids. Many EDS patients therefore often search for what gives them relief and also improves mobility. No doctor will quickly admit it, but the idea exists among EDS patients that the high costs of orthoses contribute to this reluctance. There is no consensus among doctors, therapists and health insurers that orthoses contribute to the treatment in the basic sense. This often makes it a struggle for EDS patients to get the treatment that suits them best.
They, like me, often look for the possibilities that are offered. An EDS patient feels very well what his or her body needs. For me, these are ankle-foot orthoses. The moment of putting them on for the first time gave me a sigh of relief. Walking, pain, endurance, every aspect of the support that the orthoses gave and give my ankle joints is exactly what my body needs. I can no longer imagine life without them, although wearing aids that limit joint mobility obviously also has disadvantages.
Orthoses are visible, raise questions and the restriction of movement must be corrected by another part of the body in order to function normally. This shows how restrictive and intensely difficult life with EDS is. Orthoses also prevent dislocations and subluxations. These are so painful that wearing them, to prevent possible pain, improves mobility.
It sounds simple and in my opinion it is: an unstable body benefits from stability from outside.
Living with Ehlers Danlos Syndrome 