Joint Hypermobility Syndrome and Ehlers-Danlos Syndrome are certainly the invisible syndromes. People who have the condition usually look “normal” and can do the things the most people can do. However, they live in chronic pain and get so tired from just doing simple everyday tasks. Even many doctors have no idea about the condition and the full implications that is has on how well a person can function in life. It also means that there is very little funding (especially for children) to help pay for the equipment and therapy that they need.
The only way to truely get a better understanding of the condition is through the storeis from those who have the condition and that is what I want to share here. I have briefly shared part of our journey with JHS and will continue to share more as our journey progressing. I also want to share the journey of others who also have JHS/EDS.
Now I am not doing this for you to feel sorry for anyone who has JHS/EDS. I am doing it to help raise awareness about the condition as knowledge is understanding. By raising awareness I hope that we can help raise funding for better services and resources for those affected by the condition as well as research into the area and one day maybe find a cure.