Some if you may or may not know that I suffer with a collection of chronic illnesses. One of these is an incurable connective tissue disorder called Ehlers Danlos Syndrome Type 3 (EDS).
Connective tissue holds your joints in place and acts like glue in a healthy person, but in someone with EDS it doesn’t work properly causing hypermobilty, subluxations, dislocations, and broken bones. As collagen is all over the body, my EDS causes chronic joint and muscle pain, chronic fatigue, photosensitivity and attacks my bladder and stomach severely.
I have broken my ankles multiple times which I was told by a surgeon and a rheumatologist was caused by weak knees. I was provided ankle braces to try to prevent further breaks but the NHS orthotists did not assess my knees. After years of physio, with little luck and due to my EDS progressing I am meant to to enrol on UCL pain rehabilation programme . However, I spend most my time in bed when I am not in hospitals, cannot walk very far without days of rest prior and may not be strong enough to complete it.
Doctors and EDS patients have told that smart crutches can help posture and allow me to walk further but are not available on the NHS. If I don’t get these mobilty aids it is very likely I will end up in a wheelchair, which will cause more muscle and joint deterioration long-term.
I have now become too sick to work and kindly asking for contributions to help me buy 2 push care knees braces (£140) and a pair of smart crutches (£140). I have set the goal slightly higher because I would also benefit from wrist, neck brace and finger splints (although these are not as urgent).
All money raised will only be used for mobilty aids. If you can’t help me I understand but love if you could share my cause.