Let me start by introducing myself, my name is Craig I’m a keen Photographer and Musician, I also have EDS and I am the newest member of the Access Card team at Nimbus Disability.
What is EDS/Ehlers Danlos Syndrome?
I have Ehlers Danlos Syndrome (iii) EDS, or as it’s known.
EDS is a genetic disorder in which the structure of connective tissue is abnormal due to a gene mutation during birth, the protein which affects collagen and tissue is affected with this mutation.
This results in incredibly fragile and hyper-extensible tissues and joints throughout the whole body which can lead to a range of symptoms; from joint dislocations (Extremely painful) and subluxations (partial dislocations where the joint sits out and is also painful), to internal organ ruptures, widespread pain, slow motility and digestive issues to autonomic dysfunction like heart problems, temperature control and seizures, the effect on the body is widespread which makes the condition vary from day to day.
In short EDS makes every day different and the amount of limitation I may face changes also, explaining this to a stranger or member of staff when it comes to visiting an attraction or live music venue is extremely frustrating and tiresome, as one day you may look fine the next you may be using a wheelchair to get around, something most people just cannot comprehend.
See unlike a normal body system, my body recovers and repairs at a different pace and because of the amount of pain I am in constantly my body produces a high rate of adrenaline during activity, so the damage I may do to my joints on a good day will rear its ugly head either later that day once I stop or the day after.
For example here is a photo from when I last broke my arm (I didn’t realise for over a week that it was so badly broken) I’ve had many fractures and joint injuries obviously.
I have almost died from a cyst that ruptured my appendix and another that formed on my throat, I have had many other close events that due to my pain tolerance I didn’t know the severity of the situation,
This makes for a really frustrating and sometimes scary experience when I push myself for social events or holidays as I often then end up in hospital as consequence of my actions, I won’t let my disability hold me back.
So why do I support the Access Card?
The Access Card has been a huge help for me personally for many reasons, no longer do I have to go through the hassle of explaining my condition or take heaps of important paperwork just to go and see a live event like gigs or Download Festival for example which I attended for the first time this year by having the Access Card.
The Access Card also helps provide me with a form of identity when it comes to being a disabled person as I mentioned earlier on face value I can appear different from day to day, I use the card to talk to people about why I need the card, why I have the symbols and what help I may need.
Why I’m part of the team at Nimbus:
I joined Nimbus and the Access Card team primarily to help raise awareness of invisible illness and to help empower those with a condition that is not always well noticed and to help people in a similar position gain more confidence when visiting places of interest and to help represent a demographic of people who normally go un-noticed by helping them join the card scheme.
As you can imagine there are many forms of disability and not all are apparent on face value, conditions such as EDS, Fibromyalgia, Mental Health, Arthritis, Epilepsy and many others are not always understood or represented in a way which helps them, having an invisible illness myself, I can understand the barriers that invisible illness sufferers face and the stigma associated with the conditions they may have.
In my line of work I deal with applications for the Access Card and I am involved in media work where I can help represent invisible illness to providers to help them identify the barriers that people may face when visiting a venue or place of interest I also use photography and video footage to highlight access routes and provide visual information to potential visitors.
So that’s all about me, I hope to speak to you all very soon, please feel free to contact me about any questions about the Access Card or any other related enquiries you may have.
To learn more about EDS or for support please visit the following links:
A comprehensive charity website that offers advice and support for EDS patients their carers and families they offer telephone advice and support also.
USA based resource website with information and support via their facebook and online forums.
Alternatively there are self help groups on Facebook, search Ehlers Danlos Syndrome to find groups that may be of use to you.