I am currently about to embark on a project I hope will help raise awareness of EDS, not only of the medical side of the condition, but also of the people it affects.
There are many videos on youtube that aim to raise awareness of medical conditions, including EDS. However they tend to either focus on the medical information OR offer a personal insight of someone living with EDS.
I aim to create a film that not only gets the medical information across but also shows the personal effect of the condition on many people, not just myself.
I hope that this film will offer a current and unique insight into the condition that can be shared with family members, friends and collegues. My ultimate aim would be that the film could be used as an awareness tool by EDS/HMS organisations to get across to medical professoinals, social care providers, schools and employers how EDS effects life day-to-day and the emotional wellbeing of the EDSer.
So I want to do the best job I can and to do this I need your help!
One of the biggest hurdles people face when trying to get drs to understand eds is that often the condition is seen as a 'one glove fits all'. That is that a hip joint of one EDSer will look pretty much the same as another EDSer. We know this is so far from the truth and that EDS never looks the same, not only from person to person but even for the same person the condition can change how it looks over time.
Its also a misconception that ALL EDSers have stretchy skin. I for one do not have stretchy skin despite having such severe EDS effects elsewhere.
Finally most EDS awareness information focus on the more common effects (loose joints, stretchy skin etc) but so many of us have serious digestive issues, related conditions such as POTS and crossovers between the different EDS subtypes.
I want to get these things across as much as possible. This film is not about repeating the same information that is already out there but is to dispell myths and start talking about the less common issues.
To help me do this I need photos, video clips, audio clips, quotes, etc.
Can you help?
Here is what I need:
*splints/mobility aids/medical devices such as TENS machines,
*GI treatment inparticular feeding tubes,irrigation systems, liquid diets, food intolerance, blending your food for liquid diets, bloating, GI surgery photos (scars, recovery etc)
*EDS skin - stretchy, super stretchy, non-stretchy, bruises, scars (typical eds scars and non-eds typical scaring), nodules, stretchmarks, poor wound healing, stitches/sutres pictures, visible veins/transparent skin/non transparent skin
*joint deformity - from reccurent dislocations, scarring etc
*actual dislocations, subluxations, sprains, other joint/bone injuries
*Spine - curvatures, kyphosis, fusion surgery, braces, flexibilty
*xrays - obvious eds xray abnomality and 'normal looking' xrays.
*baby and young children - floppy baby pics/clips, bum shuffling, late walking, clumsiness, easy bruising, easy injuries.
*fatigue/exhaustion - stuck in bed, looking exhausted, floppy/weak limbs, clips of trying to talk with brain fog etc
I also want to get across that we are still people 1st and EDS 2nd so photos and videos of :
*celebrating milestones - birthdays, weddings, births, graduation etc
*family snaps, holiday snaps, having fun.
*Smiling and happy pictures of old and young.
*Pictures of the emotionally hard days.
*adapting normal situations to eds eg birthday celebrations in hospital, taking the kids to school on your scooter etc
I will also be using audio clips of quotes, thoughts and readings from EDSers rather than just having lots of text to read. For this I need voice recordings or video clips that I can extract the audio from.
*What does EDS mean to you?
*What are your worries about the future/hopes for the future?
*What bad experiences have you had re drs, schooling, general public,
*What gets you through the bad days?
*Quotes, mottos or something someone has said that changed your outlook or is your daily EDS mantra?
I would love to have some audio clips from EDS kids too. Even something simple like 'My legs hurt' or 'I want to play with my friends' etc Also audio clips from kids of EDS parents such as 'I help mum by...' etc
I would also like to have people reading some of the information in the film rather than having lots of text to read. I need people to volunteer to record themselves reading from a script once it is written. Again I want to get across the vast range of people this condition affects so if you have a child who could read a line or two, even a young child who could repeat a few words etc.
Finally if you have a video blog on EDS that you would be willing to let me use clips from that would be great.
This project will take a while to complete but I hope that the time and effort people contribute will be reflected in a film that is unlike any other EDS awareness material currently out there.
If you would like to be involved in anyway please email the project email firstname.lastname@example.org
If you send photos, video clips or audio clips please include your full name, age and location so I can credit you.
If you would like to be part of the script recording please email and I will contact you once the script is ready to be recorded.
Finaly if you have any other ideas please email or comment below.
Email - email@example.com