I am a very private person so this is hard for me and I am sure I will miss things out but I have tried to hide and successfully hidden my condition from a lot of people growing up, I don't want sympathy, that's not me at all and looking at my social media, it looks like there is nothing wrong but social media can portray whatever you want it to.

Your donations will go towards the research team, tests, scans that are required from the EDS participants involved and to look into genetics and management of this condition. We are looking to create clear pathways and care plans for use in future patient care, along with more awareness and learning within our NHS and healthcare system. 100% of donations will go towards this research project.

When I was 5 years old, I was diagnosed with hypermobility; this was after a few years of my mum already taking me to the doctors and hospital on numerous occasions to tell them that something was wrong and at the age of 3 to 5, I shouldn't be waking up screaming In the night, clenching my legs with the pain. I shouldn’t have been falling down when walking because my ankles were so weak that they couldn’t support my body. I finally received a diagnosis of hypermobility at 5 years old and it quickly became obvious that there was no specialists or pathway for GP’s to refer to. so you are told you will have to learn to manage it, brilliant.

I was subsequently diagnosed at 32 with EDS (Ehlers-Danlos syndromes are a group of rare inherited conditions that affect connective tissue). Not that this made a difference because there is still no management or care plan available and I am just told unfortunately that I have to try and ‘manage‘ it and when i say manage, I have just learned to live with it and I have good days and bad days.

There are levels to this condition even for the same type, sometimes ending up having walking supports and/or in a wheelchair and having numerous surgeries to strengthen and support bones.

I have had numerous dislocations, one resulting in losing all the feeling and movement, blood flow to my left leg due to the dislocation pressing on my artery and nerve and cutting the supply off. I was sent to hospital via an ambulance that my husband had rang and he had to explain to the paramedics, what EDS was, they were amazing but didn't know what EDS was (which i have found across the majority of the NHS, clinicians don’t know or even scarier have never heard of this condition). It was explained to the Emergency Department staff also and i was placed on the trauma ward and given morphine. I had no feeling at all in my leg and couldn’t move it. My blood pressure was 193/116, which indicates hypertensive crisis and a high risk or heart attack or stroke. I was in the Trauma ward for around 3-4 hours with no examination, X-Ray, I was just given a high dose of Morphine. I managed to let my husband know in my morphined state that my hip felt like it was locked but I know my body and condition and I felt it could be put back in. (My husband and I have put various joints back in place on me numerous times and luckily he has become quite good at this). The only reason we went to hospital was because I lost the feeling and couldn’t move my leg. Anyway, my husband asked the nurse on the ward and asked if he could try and help me as I was asking him to and she replied “Yes, please do, because we don’t know what to do with her”. This is not the nurse’s on the wards fault, they aren’t trained and 95% don’t know what EDS is and if they do they don’t realise how many strands of EDS and what this means for that patient. It’s complicated and I don’t blame them but this can’t continue. This is just one of my episodes that I have had, there are many many more and now each of my joints lock, crack and most of the time people wonder what I am doing flicking my arms and legs around but i am ’unlocking’ that joint or moving it around in it’s socket.

I know a lot of people in the EDS community now through social media, support group apps etc. Some of these affected by this condition being small children and for me I have learned myself what is best for my condition and my health because I have had to create my own plan; but for a child with this and their parents, who are new to it and don‘t realise the implications and decisions made by an inexperienced EDS healthcare team can be fatal.

There are 13 main types of EDS and more information can be found at this website: https://www.ehlers-danlos.com/eds-types/

The thing that people and a lot of healthcare clinicians don’t understand is, there are other conditions, so many, that can be linked to EDS but are sometimes overlooked or recorded as isolated episodes or conditions. Some of these are: https://www.ehlers-danlos.org/what-is-eds/information-on-eds/conditions-linked-to-eds/

I have learned to live with my EDS and it is painful and uncomfortable everyday and is getting worse. Luckily I have the best family around me. My husband has learned how my dislocations go back in, when they are in places I cannot reach myself, all my family are really supportive but will unfortunately never understand what I am feeling everyday and the pain I try and successfully (most of the time) put a happy face on and just get on with it.

There are specialists in America and are specialists in each type of EDS and have full teams from counsellors, geneticists, specialist physio’s, dietitians to surgeons and many more.

This is what we need in the UK but to start with we need more research into EDS types, managements and a research team to work with them contacts or to research EDS further.

A university that I have been speaking with would like to look into this further and to help with this and the associated costs and some supports haha, I will be doing a skydive to help to raise money and to help our future generations in the hope that they won’t have to live in pain and if they need help, it will be there in some form.

Please donate whatever you can and also if you could share it with everybody you know, I would really appreciate this.

Anybody who wants to join me on my skydive, fundraise and support me in this journey, please contact me through this website. (Please make sure your GP/Specialists has signed you off to do this, if you have EDS or any other condition)

All updates will be posted on here along with the skydiving pictures once completed, this will be following lockdown but gives us more time to spread the word and raise more ❤️

Thank you for taking the time to read this and donating.

Catherine