Ehlers Danlos Syndrome and the gap in protocols for people undergoing treatment.

This is Robert and here he discusses the variety of complications that can impact the body. He addresses an important aspect of understanding and awareness within the health care system that is missing for people with Ehlers Danlos Syndrome.

This is Robert and here he discusses his concerns around passing Ehlers Danlos Syndrome to his children and the pathway he was offered to diagnose them.

This is Robert and here he discusses the information variation from professionals who have limited to no experience with Ehlers Danlos Syndrome.

This is Robert and here he discusses how education, awareness and empathy are important in gaining support for people with Ehlers Danlos Syndrome.

This is Robert and here he discusses the impact Ehlers Danlos Syndrome has had on him with his related injuries and his ability to participate in activities that he enjoys.

This playlist compiles videos from Robert who has been diagnosed with Ehlers Danlos Syndrome. The themes address his symptoms, complications experienced from medical treatments, support networks, difficulties, alternative therapies that work and aspirations for the future. He is a delightfully cheerful and humorous character and his experiences are valuable in offering insight into lived experiences within the community. Please watch these videos and react with the respect they deserve.