Thursday, 2 December 2010

EDS Awareness video. Get involved!

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:

Photos/video clips
*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.

Audio needed
*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

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 -


  1. Hey
    I'm Emma i have hypermobile type eds (the one with tons of symptoms to make life really haggard but nothing much that might kill me so i'll live and suffer a loooong time, I think its kind of taboo to admit in the eds community you kinda wish you had a type that means I'll die soon, but honestly every minute is a huge effort for me and I feel like I live for my family and friends not for myself... anyways I've gone off topic (brainfuzz from meds) just wanted to say I'm really kean to help out in eds support in any way I can so let me know if there is anything spacific you need that I may be able to provide, I have photos of swollen knees and strange skin reactions etc but currently my laptop holding all my files is in a haopefully-temporary coma :$

    I could also link you alot of different blogs I follow (or check my list on my blog) that are lots of eds-ers who I'm sure would be happy to contribute.. and also I do alot of artwork about eds and pain (more for myself than for arts sake) as well as my illustration work and I'd be more than happy for you to use my images, I could even be happy to provide them for promotional purposes for the project, if there is anything you want to use..

    please check out my blog at

    and artwork at

    I really hope I can help, and thankyou for writing your blog it is fantastic. Emma x

  2. thanks emma your work sounds great.
    Iv set up a group on facebook called Zebra Awareness Media for artists, bloggers and others who use art and media to raise awareness of rare conditions including EDS.
    The film I talk about in this blog is just one of the few im working on as part of Zebra Awareness Media.
    If you go to the group you can add your photos there for the film or just join and comment in the fim discussion.
    You can also share links to your website and blogs to spread awareness of EDS and your story.!/pages/Zebra-Awareness-Media/179023998784113 (or use the Badge link at the side of the blog)

  3. I would love to help and share also.
    Not sure how to contact you since I have not started blogging, but age 53 EDS hypermobility and lots of other related issues. Live in a very large city, NYC and no one knows what EDS is. I have to go to another state for a specialist! So yes, would love to educate the public, cause I certainly don't look sick on a good day! Barbara

  4. Hi Barbara.
    Im no longer working on this project as I am about to start studying again but thank you very much for wanting to get involved.
    May is EDS awareness month so now is a great time to start writing that blog and help make more people understand what EDS is and what it is like to live with. There are quite a few people who blog about EDS, some write very professionally and about the medical side of things, some write very informally and just talk about their day to tday life with EDS. There is no set style and any talk on EDS is always great and helps us all.

    Its easy to start a blog. this site I use at the moment is good becuase it does all the hard work for you in designing it and everything, you just log in and type. So maybe start by creating an account with blogger (it uses your googlemail account details if you have a google email account).
    I write my blog entry in a word program like microsfot office and spell check it before copy and pasting here.

    I found blogs really helpful when i was first learning about eds and also when i decided i wanted to do more to raise awareness. Its really helpful also to read other blogs when you are thinking of starting your own.

    if you do start blogging please let me know where I can read it.

    Also there are a few groups on facebook for people with EDS that are full of people from the USA (im in the uk). If you aren't already a member of them it might help you by giving you access to other people with eds living near you who can recommend drs.

    The 2 best groups on facebook I find are :

    Zebras for life :


    EDS Friends :