The In-Visible Project
ehlers-danlos syndrome (eds) is a collection of hereditary syndromes affecting connective tissue. in EDS, a basic building block of the body-collagen- is improperly formed, causing problems throughout the body. Despite this fundamental defect in structure, people with eds usually appear to be normal and healthy. however, each type of eds has a large collection of symptoms which vary widely from mild to severely disabling, and is sometimes fatal.
It is said that EDS is most likely the most common, least recognized heritable connective tissue disorder, affecting 1-5% of the general population. Right now, only 5% of EDS cases have been recognized due to lack of funding and education to the general population and medical community.
Photography is my art and passion, and I have chosen to use that medium make the invisible 'in-visible' by photographing ehlers-danlos syndromes patients in their home environment. This will ultimately serve to show how ehlers-danlos syndromes effect these patients and their bodies on a day-to-day and minute-by-minute basis.
My goal is to use art to bring awareness to the chronic, debilitating, life altering effects Ehlers-danlos has on those who inherit this connective tissue gene. The photographs will be used to educate both the public and the medical community on the importance of EDS diagnosis, education and medical funding.
I aim to partner with hEDS (hyper mobility ehlers-danlos syndromes) support groups throughout the country to gather volunteers for The In-Visible Project. By tapping into support groups, I will be able to directly correspond with individuals who are interested in sharing their Ehlers-Danlos Syndrome experience with me and my camera. After I have gathered individual participants from support groups, I will send out a questionnaire that will serve as the participant's intake form. This will allow me to get an intimate look at the participant's life by prompting them to share their 'story' of how they survive and thrive with Ehlers-Danlos Syndromes.
From there I will schedule one-on-one in-home photo shoots and mini-portrait sessions with support groups whom are willing to participate in the in-visible project. When time, travel and health allow, in-home sessions will be tailored to each participant based upon their intake questionnaire answers. This 'lifestyle home portrait session will serve as an in-depth look into their lives with ehlers-danlos syndromes, giving the audience a better understanding of the visible in this invisible illness.
The images and stories will be shared on social media platforms initially in the form of a "100 day project". As the project grows, it is my aim to curate a traveling public gallery of the in-visible project images and stories of those who are brave enough to share.