On the 1st of June Kairi woke up in excruciating pain, she is pretty tough so tried to get out of bed to get on with her day. When she tried to stand, her legs collapsed from underneath her and she fell to the ground. Ever since Kairi hasn’t been able to walk, at times could not talk, see, smile, laugh, feed herself, go to the bathroom independently...the list goes on. The reason for all of this is an extreme flare up of Ehlers Danlos Syndrome. Kairi experiences at least one dislocation a day which occurs as easily as a sneeze. She experiences severe pain in all her joints and at times her skin has the same sensation as a tattoo with the slightest touch. They are yet to find a pain relief that will take more than the very edge off.


Ehlers Danlos Syndrome (EDS for short)  is an incurable connective tissue disorder with no cure and very little treatment. It basically means that collagen in our bodies fails. Collagen is found from the top of your head to the tips of your toes and almost everything in between. It is the glue that holds us together. In an able bodied person, the collagen acts like a rubber band, so when it stretches it springs back, when EDS patients collagen stretches out it stays there, meaning whatever role it was playing in our bodies is jeopardised. Symptoms include constant severe chronic pain, frequent dislocations and subluxations of the joints, chronic fatigue, stretchy skin that easily tears, spontaneous organ rupture….the list goes on. It is not a benign condition. There is little research into EDS so the reason behind flare ups is still unknown which makes it very hard to treat.


Without help Kairi will not have an accessible flat to return to (which was very hard to find in Liverpool). She is also now wheelchair bound but stuck in very subpar wheelchair that restricts her independence heavily and will prevent her to be able to return to a version of normality because it is to heavy to self-propel for more than short distances and unable to get over small bumps (ie. door frames). Kairi has always been a very independent woman and finds asking for help extremely difficult. She is now in a situation where she is left with no other option. So if you could spare anything to help her be able to pay her bills and get a wheelchair that will give her a some of her independence back and hopefully get back to work it would make the absolute world of difference. They have estimated she will be stuck in the hospital till late September, without finding an income within the next two weeks she will be forced to end her lease.  Your support would mean so much to both her and family who are on the other side of the world and unable to help.


If you’ve gotten this far we sincerely thank you for your time. If you can’t help financially please take 5 minutes out of your day to look up Ehlers Danlos Syndrome. Awareness is the first step to finding a cure.  


Thank you to much for taking the time out of your day to read this, look up Ehlers Danlos Syndrome and/or donate to help Kairi.