'Making the invisible, visible' - EDS in pictures.

I take advantage of the fact that my illness is 'invisible' most of the time - it means that I can tell people about it when I want to, and if I don't want to, I don't have to. There have been times in my life where my illness hasn't been invisible, and as quite a private person, that's quite hard. For this post, I'm going to show you some pictures of the visual signs of EDS.

Each day I have to take around 25 tablets. I set up and run my special formula feed each night and in the day. If you see me running it in the day, it's because it's waking me up at night and making me feel sick, or because I'm having to run it very slowly for 20 hours because my gut is running slow.

I hide my swollen stomach under baggy clothes. My stomach swells up with food, because my small bowel runs slowly (dysmotility), stops or works in an uncoordinated manner.

This is my feeding tube! It has two ports and a balloon to keep it in place. The one on the right hand side of it is the gastro port - it leads into my stomach and allows me to vent and drain when I am sick or have excessive air in it. The port on top is my jejunal port - this leads into my jejunum, part of my small bowel, I feed through this to bypass the first part of my GI tract. This avoids it sitting in my stomach and making me feel sick. The redness around the side is from acid leaks that burns the skin around the stoma. The pointy port on the left hand side is the balloon, this has water in and sits on the back of it, inside my stomach to stop in tube from falling out. There are many different types of feeding tube - I prefer the button style as it is much smaller and more discrete.

 This is an xray of my feeding tube! It's not supposed to look like that! The type of feeding tube I have is called a PEG-J - its a long one that enters through my stomach and leads through into my bowel. The feeding tube is the fish shaped outline. The bottom end on the right hand side at the lowest point is where it enters my body, it should head over to the left in a straight line and run through my small bowel. Because of the uncoordinated movement that my bowel makes, it often sends the tube back into the stomach which is really annoying! At this time, my tube had kinked at the top so I couldn't use it because it was blocked. When this happens I have to head over to my best friends in radiology, they take the tube out and run a thin wire into the stoma, into the place where the tube should be, then they thread the wire through my tube and guide it back in place. This happens a hell of a lot and I'm fortunate to have a lovely team in radiology, though I'm sure they're sick of me! I don't know if you can spot a smaller wire with bumps on it in this picture, but I also had a small bowel manometry going through my stomach and bowel - this was to measure the movement in my bowel.

I used to have an NJ tube, this was stuck to my face and looked pretty awful - it entered through my nose and went down the back of my throat, into my stomach, through my stomach and into my small bowel. This was a time when my EDS were certainly not invisible!

Here's me demonstrating my flexibility as a result of my EDS. This is one of the functions that they look for on the Beighton score - to be able to touch your forearm with your thumb. Mine can sit flat. I can also get my fingers to a backwards 90 degree angle, touch the floor without bending my knees and reach my right shoulder with my left hand behind my back. I can also pull all my fingers out their sockets.

Due to musele wastage, my left shoulder sits lower than my right - it's very uncoordinated and pretty wonky. I am currently working on this shoulder with the physio, and it actually sits higher than it used to! :)

Here's some nice pictures of the bruises I get - the top one is my leg and the bottom one is my arm. Easy bruising is a sign of EDS as our veins are so fragile. Many of the marks that you see on my skin are scars. I have a few scars and many of them were made from just a simple itch! This is due to the fragility of the skin in EDS.

This is a rash - I have special dietry requirements due to my sensitive gut and body. My specialists have recently started to consider that I might have a histamine intolerance. If I come into contact with certain foods (garlic and onions being the biggest offenders!) it causes these awful rashes.

I have to undergo quite a few surgeries as a result of my EDS - they always ask you to bring slippers to walk down to theatre in, but I've always worn my converse and it seems to amuse everyone! It's sort of like, my thing now!

I was in a wheelchair for three years as a teenager - I don't have any pictures of this, because I didn't use it much as I spent most of my time in bed as I was so underweight and ill. When I started to rehabilitate I walked with shiny pink crutches. Sending my wheelchair back was the best feeling in the world! I haven't used my crutches for four years! :) When this picture was taken I was very poorly. I had a fun night planned at the Children in Need concert with Laura, Amy and Carys, mine and Amy's mum had arranged a limo to take us. I only came out of hospital in the morning, yet I hadn't eaten in 3 days. I came home, curled my hair, had a few sips of Complan and headed out. Unfortunately, I had to leave before the show started and ended up back in hospital again.

Lastly, a really attractive picture of me back in 2010, looking pumped up on steroids! This was a day or so after surgery where I'd had a hefty infusion of dexamethasone and prednisolone.

That's all for this post. Its pretty hard to photography the invisible, but I hope this makes Ehlers-Danlos more visible.