Ehler-Danlos is an orphan disease...a genetic disorder of the collagen in connective tissue. It results in tissue fragility, thin skin, tissue paper scarring, lack of subcutaneous tissue, hypermobility and laxity of skin and joints, extensive and impressive bruising, pectus excavatum, herniations, spontaneous organ ruptures, chronic mild to severe pain and chronic fatigue. It is associated with chronic headache disorders, anxiety disorders, fibromyalgia and depression. It is often not diagnosed by physicians but rather is frequently diagnosed due to the research of patients or family members themselves. This perhaps after much ill or even dangerous and life-threatening treatment by medical professionals due to the lack of understanding of this severe and rare disease. The goal of this group is to support each other in living with this illness, by remaining cheerful in suffering, lifting each other up, helping each other locate and use medical, financial, spiritual and any other kind of resources that are available to us. I invite you and anyone you know who will be helpful to us to join in this journey toward a full and useful life.

Mary

The photo is of me and my husband Jack. He is the one with EDS. I say it is Type IV according to my recollection. He says the docs told us it was of undetermined type. Go figure. Obviously we need to do some more homework.