Sunday, January 9, 2011

An Autoimmune Call To Action!

I'm reposting this excellent opportunity for autoimmune disease awareness courtesy of Jenny at UII - Understanding Invisible Illnesses:

UII is working with Villanova University on a groundbreaking project!  Nursing students at the University will be researching what chronic/invisible conditions are present on campus, and doing projects on them and the effects they can have on body image!  This will be presented in combination with an existing program - "Love the Skin You're In", a body-image focused fashion show (held this year on February 7).

At the University's request, UII is coordinating a live panel discussion, which will take place on February 22.  In addition, we have decided to develop a visual display to accompany the fashion show (there will be many displays with body image and health information, as well as the student projects).  This display will then 'travel' the campus as promotion for the panel discussion!  That means at LEAST two full weeks of exposure raising awareness of chronic and invisible illnesses on a campus of nearly 10,000 students, staff, and faculty!

But to make the display a reality, we need YOU!  We are asking people from around the country (and around the globe) to send in your pictures showing the 'hidden' aspects of the conditions you live with, such as:

  • Good health days (put together, well rested, makeup and hair done, etc) versus flare days (blotchy skin, rashes, exhaustion, oily unwashed hair, and so on)
  • Scars, hair loss, patches on skin, or other permanent 'marks' of your condition(s)
  • Revealing the hidden devices you use (insulin pumps, prosthetics, etc)

See the bottom of this post for a list of ideas, but use your life for inspiration!  The sky's the limit.  Our goal is to show what lies below the surface; what we really look like in the throes of our conditions.  Our battle scars, if you will.  Also, take an artistic and white, close ups, high or low angles...anything that emphasises your subject is great!

General information: 
The deadline to submit your photos is Sunday, January 30; however, the earlier the better as the pictures will need to go through at least two reviews before being sent off to be printed.  I will let you know if we are able to extend the deadline. Pictures should be submitted via email if possible.  Please contact me if this is a problem and we'll discuss our options. When submitting pictures, please include the name of the condition, issue, or device, and if you want your name to be listed or the photo to be used anonymously (see below).

We would like to represent a wide variety of conditions that are chronic and/or "invisible" in nature.  If you are unsure if your subject is appropriate, please ask me and we'll discuss it.  Most conditions will be relevant; see list of examples below.
Pictures should show the 'truth', but please be tasteful - use common sense, if you wouldn't want to show your grandmother, don't show it to us.

All pictures will be reviewed for appropriateness and space restrictions first by me, then by staff from the University's Office for Health Promotion.  We retain the final decision on which pictures will be included.

Please indicate if you wish to have your name listed as a contributor.  If you so desire, we will use your picture anonymously.  No picture will be individually identified with a name, but we will provide a list of contributors who wish to be included somewhere with the display.

As this is a Catholic University, please understand you may be included in prayer intentions as a participant in the project (whether by name or anonymously).

We will try to let you know if we wish to use the picture again somewhere in the future; however, depending on the logistics of tracking all the photographs, your submission will imply your consent for future use of the image for educational and/or awareness purposes.

No information will be shared (other than your name, if you elect to be listed); your email address and any other identifying information will be kept private.

I will be posting pictures and perhaps video of the display and event online when available.

I will also try to put together a handout or list to go on the school's website of resources and communities students can look into.  If you wish to have a site or community listed, please send me the information so I may review it beforehand.

Don't forget to send a "healthy" or "normal" picture as well (if possible), so we can show the contrast between the face we choose to present to the world and the one we see in our own mirror!

Examples of Ideas for Pictures (this is just a list of IDEAS; please feel free to use other ideas):

  • A profile picture (like the one I use - makeup on, hair done, in a formal suit), contrasted against
  •  the bald spot I usually cover (from Localized Scleroderma), or
  • of myself in bed totally wiped out with oily hair (because I'm too exhausted to wash it) and pale, blotchy skin with swollen parotid glands 
  • A person in an outfit which hides an insulin pump, contrasted against
  • them lifting the clothing to reveal the pump and where it enters their body
  • A person at an average weight having fun and laughing, contrasted against
  • protruding ribs, rolls of fat, hair loss, or brittle nails (for someone with an eating disorder)
  • Scars (from surgery, self-injury, or disease progression)
  • Patches on your skin (such as scaly patches, red marks, ruddy patches)
  • Rashes
  • Mouth ulcers, tongue lesions, severely chapped/sore lips
  • Inflamed joints
  • Discolored or misshapen extremities
  • Hives
  • With-versus-without a prosthetic (such as standing on two legs then the same pose with one fake leg missing)
  • Devices which symbolize something about your life with this condition (for example, I might use an array of eye drops for varying levels of dryness or the denture cream I used to hold in a temporary crown on a tooth destroyed by dry mouth), such as:
  • mobility aides
  • joint support devices
  • testing supplies (such as for diabetics)
  • medical paraphernalia (such as syringes)
  • specialized furniture

COUNTLESS conditions fall in the umbrella of Chronic and /or Invisible Illnesses.  A VERY brief list of conditions follows (this is NOT an exhaustive list by any means):

  • Autoimmune diseases (Sjogren's, RA, MS, Lupus, etc)
  • Diabetes
  • Pain conditions (Fibromyalgia, etc)
  • Chronic Fatigue Syndrome
  • Gastrointestinal diseases (Crohn's, IBS, GERD, etc)
  • Mental health / emotional / behavioral conditions (Autism, Depression, Bi-Polar, Anxiety, Schizophrenia, etc)
  • Cardiopulmonary diseases (heart disease, pulmonary embolisms, Asthma, etc)
  • Cancers
  • Chromosomal disorders
  • Musculoskeletal conditions (Osteoporosis/osteoarthritis, etc)
  • Neurological diseases (Parkinson's, ALS, etc)
Severe allergies (Celiac, other specific foods, etc)

Please send all photos, information, and inquiries to (that's uii [dot] JennyP [at] gmail [dot] com).


Anonymous said...

The project is awesome. I will think about it.

Thanks for sharing !!

stephanie said...

I know this was not your intent in posting this, but after reading this post, I feel even more grateful than usual. Many of my joints (and some muscles) are very painful, I have glasses (and eye drops) instead of contacts, and need to drink liquid all the time, but, other than a few mouth and skin issues now and then, THAT'S IT. You have such a long list of infirmities and ailments, and mine are only a fraction of that. How can I NOT feel grateful? Thanks again, Julia, for having this blog.

Julia Oleinik said...

Thanks for reading this blog!