Ehlers Danlos Syndrome

Two years ago I was finally diagnosed with a genetic disease that has been effecting me my entire life: Ehlers-Danlos Syndrome. From my first knee surgery in 7th grade, to my hysterectmony this past August, EDS has taken a toll on my body and my health. 

Ehlers Danlos Syndrome is "s an inherited connective tissue disorder with different presentations that have been classified into several primary types. EDS is caused by a defect in the structure, production, or processing of collagen or proteins that interact with collagen, such as mutations in the COL5A or COL3A genes. (This is the collagen of granulated tissue, and is produced quickly by young fibroblasts before the tougher type I collagen is synthesized. Commonly associated with keloid formation. Reticular fiber. Also found in artery walls, skin, intestines and the uterus.--COL3A1). The collagen in connective tissue helps tissues resist deformation. Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic. In some cases, the severity of themutation can be life-threatening.

As a visual individual, I have wanted to be able to show my friends and family exactly what Ehlers Danlos Syndrome looks like, but a lot of the sources that I found online were either grotesque, or very poor quality photos that I was embarrassed to show.

After several months of talking myself into starting this project, I found a creative friend (Chris West // A light Pro) to come alongside me and capture the first part of this project with me on Canon Beach in Oregon. His eye perfectly captured the beauty I wanted to show through these images.. creating something that is not only informational, but also shows that there can be beauty within brokeness. I am excited to start planning the next two parts of this personal project and having creative friends come alongside me to help with the imaging. 

It is my hope and desire that these images can not only be a great resource for patients suffering with Ehlers-Danlos Syndrome, but it can be a visual representation of the disease for doctors, medical staff and the families and friends who support individuals who have Ehlers-Danlos Syndrome.