The expression I always use to describe my condition is that I have EDS, this means my joints go out more than I do. Of course, this usually gets a laugh, but I don’t think people realise that actually its true. For me to go out takes preparation, rest, often walking aid, I also have a heart condition and I am tube fed, so it can involve taking medical equipment. My joints however, at their worst can sublux and dislocate several times a night when I move in bed, when trying to get comfortable enough to sleep. A great example of how lax ligaments can cause issues is my spine, I have several spots where the vertebra sublux and this has caused 2 spinal fractures and several prolapsed discs. I have now had the spinal fractures fixed with metal work, a disc in my neck removed and replaced with a prosthetic one and I have a spinal cord stimulator to help with the associated neuropathic pain.
You would think that as EDS is a genetic conditions I have had it since birth, which of course is true however, I didn’t knew I had it until In May 2014. Back then life was busy, I was working in banking, doing a PhD in spare time as well as juggling being a wife and a step mum to 3 children. My husband and I had just been on holiday to Mexico and I had come back feeing generally unwell and was suffering with chest pain. Being only 33 at the time I put it down to my stressful job and carried on with life. However, during a board meeting in June the chest pain became quite bad, rather than excusing myself and seeking help, I justified that it was just stress or something I had eaten and carried on with my day ignoring it. A couple of days later the pain was still there and my husband persuaded me to get it checked out. At the chest pain clinic my cardiologist suspected that I had had a heart attack and I was sent for angiogram. That angiogram was a pivotal point, not only was I diagnosed with a rare heart condition called prinzmetals angina but it was also, unbeknown to me, the last day of my working life.
Things went from bad to worse and my body just didn’t seem to want to work as it had previously done, I struggled to walk or do the simplest of things and it was clear that there was more going on than just the heart condition. My cardiologist sent me to several different doctors and eventually 2 years later, I received a diagnosis of Ehlers Danlos Syndrome. This is a rare connective tissue disorder that effects almost every part of my body. Many of my joints are now so lax that they dislocate at the slightest movement. My autonomic system is heavily effected meaning all the bodies automatic regulation of temperature, blood pressure pulse etc doesn’t work effectively. I have something
called Mast Cell activation Syndrome meaning my immune system doesn’t function properly and produces excess histamine resulting in uncontrolled allergic reactions. My vascular system is heavily effected and I get vascular spasm throughout my body, the worst being in the heart. I also have gastroparesis meaning my stomach is paralysed and I am therefore fed through a tube directly into my small intestine. To date I have had 36 operations and I am already planning at least the next 3, probably 4, including another spinal surgery and bi-later hip replacements. I have to say, I honestly never in a million years thought that for my 40th birthday I would be getting a new hip!
I went from extremely active and busy to being a full-time patient. Ehlers Danlos is a progressive condition and living with that and dealing with the effects of it takes it toll, not just physically but mentally. I have an incredibly positive outlook and that is in part helped by a scholarship I did with Flying Scholarships for Disabled People. The helped me start to rebuild my life and instead of continually looking back to what I was and trying to get back to that version of myself, I started to look forward and look realistically at what I could do now. I am still continuing my PhD and hope to be finished before the end of the 20/21 academic year, I also am now, very proudly, a trustee of FSDP and it is lovely to be able to give back and when I can, I also do archery, I sit down to shoot and my bow is adjusted to make it possible for me but being outside and being with other people helps to keep my mental health in good form.