My story of living with Ehlers Danlos Syndrome Trend Tonic

My story of living with Ehlers Danlos Syndrome

A lot of you are already aware that I have Ehlers Danlos Syndrome, it's something I like to talk about a lot because lack of awareness probably causes most of my problems!

Ehlers Danlos Syndrome or EDS for short is a fault in the collagen, collagen makes up every part of your body so skin, joints, internal organs, brain, eyes etc are all affected to varying degrees. Everyone with EDS can present differently and there are 13 different types. I have the most common type hEDS. 


My obvious problems started when I was 11 and kept dislocating my shoulder. I picked up a chair in school, dislocated, sat cross legged dislocated etc. My GP told my parents I was doing it to myself for attention. I was told I was a hypochondriac and clumsy. I would pass out all the time, vomit and have unbearable stomach pain and was still told nothing was wrong. 

Constantly being told until I was 24 that this was all in my head had a massive negative effect on my mental health. When I was 24 I was seen by a specialist in London and finally diagnosed with EDS. The relief I felt to have it confirmed that I wasn't crazy was unbelievable.

I currently use a rollator, wheelchair, electric wheelchair and scooter on various days depending what I'm doing. I have Postural Orthostatic Tachycardia syndrome which comes hand in hand with the EDS and is what causes me to pass out. My blood vessels are "saggy" and blood pools at my feet. I have gastro issues, joint pain, 99% sure ADHD (again 7x more likely because of the EDS). 


Some of the weirdest things are that local anaesthetic doesn't work so any teeth work I am put to sleep for etc! When I was pregnant (whole other ballgame of complications) I couldn't have an epidural so if I needed a c section it would have been emergency general anaesthetic. 

My son also has EDS, his arms bend all the way back, he gets exhausted, has gastro issues (and Eosinophilic esophagitis which is a separate issue!) and a processing delay. 

I have personally used the EDS helpline when I was at rock bottom and to speak to people that knew exactly where to signpost me for help, could empathise and offer support was a genuine life saver. 

Being in hospital with EDS is where I started Trend Tonic and I am a firm believer things happen for a reason but if I had been believed years earlier my life would have been a lot less traumatic ❤️ 

People with EDS refer to each other as zebras, when doctors are in medical school they are taught when you hear hoofbeats thing horses not zebra's, this means look for the obvious and don't search for the rare conditions. This has a huge negative effect on those of us with hidden rare conditions. The awareness range is all zebra pieces to help shout about the rare and unique of us 🦓


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