May is Ehlers- Danlos(EDS) awareness month and Ehlers danlos are a group of thirteen individual genetic conditions, all of which affect the body’s connective tissue. My form of EDS, hypermobile EDS is thought to be the most common form however, sadly, it comes with so many symptoms complications and health conditions that may come with it.

Around the age of 16 I started to get severe joint pain, increased allergies and suffering mental health, decrease bladder function. This continued for two years, then at the age of 18 after several times of anaphylactic shock, decrease bladder function and decrease in Gastro function I was diagnosed with Ehlers-Danlos. Getting this diagnosis felt like my world was coming to the end as before I got unwell I completed my silver Duke of Edinburgh award, was actively involved within the scouting movement and loved trampolining. At the age of 18 I was diagnosed with a life-threatening condition. It felt like my whole life fell apart as I felt like I was about to lose all the hobbies I love the most however…

Since then, I’ve gone into complete bladder failure and require a catheter directly into my bladder to pass my urine, had sepsis more times than you can count on one hand. This year my Gastro system gave up on ‘real food’ so I live off medical supplements and my mobility is decreasing day by day.

And something no one tells you about Ehlers-Danlos, the risk that it can cause seizures; It’s not all been bad but this year I have fallen back in love with scouting more than ever before, been massively involved in SSAGO and managed to attend several events this year in a way that works for me. I successfully received funding to hire an off-road wheelchair for my Duke of Edinburgh Gold award which I thought I would never be able to do when I was diagnosed and most of importantly of all been offered the chance to have a SNS device, which may improve the function of my bladder. None of this would’ve been possible without my friends and family who have been there to support me this year 🤍🖤🤍🖤

So this May, if you have the time, it would mean so much to me to read about EDS and raise awareness for the thousands of people that suffer with it every day. I understand how hard times are at the moment, but if you’re in the position to be able to and you want to, I am currently fundraising for EDS UK, who are an amazing charity who have supported myself and my family so much since my diagnosis.