A friend on my facebook page contaced Chris Scott Photography Dundee to ask if I was available to do a charity photoshoot. I asked for some details ..
Jodie is only 20 years old and has Ehlers – Danlos Syndrome, Type 3 Hypermobility. However she wasn’t diagnosed until she was 16 after numerous long stays in hospitals at Newcastle and London and multiple major operations. Life is not easy for Jodie or her family yet she still wishes to raise awareness for EDS as it is such a rare, cruel and debilitating disease that has seriously affected her in so many different ways. Jodie has been through so much but faces everything with a belief that she can make a difference and she is the epitome of courage in the face of adversity.
So what is EDS i hear you ask..
EDS is a rare connective tissue disorder that affects the collagen in the body and normally this resembles like a strong glue but with EDS it is more like chewing gum, therefore, the joints are not supported properly causing chronic pain/dislocations etc.
EDS can also affect the way the internal organs, nerves and muscles work and this can cause severe complications. Inside a healthy body imagine that it looks like a nice clean running river with everything working as it should be, whereas in Jodie’s body, due to the EDS, it is all baggy/saggy and more like a stagnant pond.
Jodie now has severe complex intestinal failure, she has had her large bowel removed and a permanent iliostomy stoma formed, ng (nasal gastric) feeding failed and enteral feeding via a tube (jejunostomy) failed due to small bowel retrograde dysmotility and she also suffers with neuropathic bladder. Her stomach does not function causing gastroperesis and being unable to eat and digest food.
Because Jodie can not tolerate any food it resulted in her being fed intravenously, TPN (Total Parenteral Nutrition) this is how her nutrients needed to survive are fed directly into her heart via a central line, unfortunately, this comes with serious life threatening risks including central venous catheter infections (e.g. septicaemia) and liver disease but this is Jodie’s ‘life~line’.
It is uncommon for EDS to affect the internal organs this severely. The symbol of a Zebra represents EDS as no two zebra’s have the same stripes just like no two EDS sufferers have the same symptoms.
Of course I was available for this amazing young woman, who puts others before herself, raising amazing amounts of money for The Sick Childrens hospital.. Here are some images of our day..