The Keep:Everyday Ehlers-Danlos Battles

Everyday Ehlers-Danlos Battles is a Habitica based health and support group for anyone living with the challenges of Ehlers-Danlos Syndrome (EDS). We welcome anyone regardless of whether they have been formally diagnosed, are in the process of being diagnosed, or suspect they may have EDS or otherwise unknown connective tissue disorders. We also welcome family members, loved ones, spouses and significant others, friends, and care givers of those with EDS. It is highly recomended that those joining also joing The Chronic Illness Guild.

What is Ehlers-Danlos Syndrome and Why an Ehlers-Danlos Specific Guild?
Ehlers-Danlos Syndrome (EDS) is a genetic connective tissue disorder in the body produces faulty or reduced collagen (the glue which holds our bodies and tissues together). Connective tissue and collagen can be found in nearly every system of the body and faulty collagen as found in EDS can lead to issues such as fragile skin and tissues and unstable joints. There are 6 major types of Ehlers-Danlos Syndrome currently recognized. As a whole Ehlers-Danlos Syndrome is known as a rare disease (for this reason those with EDS are sometimes known as medical zebras ) It is now believed that certain forms, Hypermobility as the primary form, are far more common than the medical community recognizes and the rare forms such as Vascular (which can have life threatening complications unlike the more common forms) are not caught enough despite usually having distinctive characteristics. For more information What is EDS by The Ehlers-Danlos National Foundation

This EDS specific guild was created out of the recognition that being a genetic condition which affects nearly every system of the body as well as a disorder which the majority of the medical community has very little understanding of, those who live with the condition often have very different challenges than those in the general chronically ill or disabled communities. It's great to reach out to the general chronically ill and disabled community but sometimes what can seem like straight forward obvious answers for them are complicated for EDS as it's not one or two factors but unstable joints on top of dysautonomia on top of mast cell disorders on top of tissue fagility on top of doctors and emergency staff never having dealt with another EDS patient etc etc.