Ehlers-Danlos Syndrome & Me
Happy EDS month!
I am Annabelle, a 1st year student at UoC studying business management with marketing and I have EDS, yes it affects me as a student but I still study like anyone else in my own way. Ehlers-Danlos syndromes are a group of genetic connective tissue disorders with symptoms affecting the whole body. Those affected face challenges to their physical and mental health. Symptoms are widespread and can be disabling. One of the rarer types significantly reduces life expectancy. Hypermobility spectrum disorders (HSD) have similar symptoms to the most common type of Ehlers-Danlos syndrome, the hypermobile type.
EDS effects my whole body in different ways; pain, tiredness, bladder issues, loose joints which dislocate easily... however, the lack of understanding from the world is the hardest bit of all. EDS is even very misunderstood in healthcare at the moment, which leads to fighting for help. University is difficult for anyone then add EDS it’s a whole load harder, the medical appointments and essays don’t mix well.
I use accessible technology so I can study as comfortably as possible, kindly paid for my DSA (disabled student allowance). But it’s still hard with a shoulder out of place in an exam - been there, done that, got the t-shirt. I also have specialist mentor to help me to talk through how tough it is feeling left out from the uni experience, so I make my own. Then every week, I speak to my study skills mentor to help me organise my work as it's hard to plan with no idea when EDS wants to show its ugly head again.
The feeling of being alone when your friends are out drinking and you're in bed in a ball in pain is hard, but without the support of my friends I would have not survived uni so far - the company, the friendship, the love and the understanding. One thing I wish everyone knew about EDS is it affects everyone in different ways. If you want to learn more, head to https://www.ehlers-danlos.org/.
