Q: What is as big as an elephant but weights 0 kg?
A: The elephant's shadow.
Riddles, we are all intrigued by them. My health is one big riddle. I have Ehlers-Danlos Syndrome, or EDS, a multi-systemic inherited connective tissue disorder. To put it simply, the “glue” holding our bodies together doesn’t work properly. There are several different types of EDS and, irrespective of the type, symptoms range from being life-changing to life-limiting to life-threatening. I am very fortunate to be highly functioning with hypermobility EDS (hEDS). I experience good days and challenging ones, and over the past three days, I certainly faced the latter…
Background:
I've experienced symptoms since my teenage years, but it was during my pregnancy that they intensified significantly. These symptoms have profoundly impacted various aspects of my life. Prior to receiving a diagnosis, I mistakenly believed that experiencing pain and difficulty was just a normal part of life. I struggle with muscle pain, joint dislocations, anxiety, frequent bruising, slow healing, chronic fatigue, bladder problems, dizziness, and a multitude of other symptoms. Throughout my life, I've consulted numerous medical professionals and undergone countless tests, yet nothing was ever identified as being 'wrong.' I will never forget reading about EDS for the first time - it felt as though I was reading my own life story. Frustrated by the lack of answers, I delved into researching my conditions because I was determined not to give up. It wasn't until 12 years later that I found Professor Ian Chikanza, a Rheumatologist and EDS specialist in London, and within half an hour of meeting him, I was diagnosed.
Since my diagnosis in October 2018, (I was 41 years old), I've made a conscious effort to take control of my symptoms. However, it wasn't just about looking out for myself; I felt it was crucial to share my journey with EDS to raise awareness about my condition. I now have two GPs who are on this journey with me. This wasn't always the case, as I had to educate even my healthcare providers along the way and guide them toward reading up on my condition themselves. I was passed from one specialist to another, often misdiagnosed or dismissed. To still keep my GPs on their toes and there are tears and head-scratching going on because NOTHING with EDS is straightforward. I do get the idea that my GPs do like the challenges I present them ;).
I know my body inside out, I am well informed about my condition, and I know my symptoms. I am fortunate to have an incredible family that supports me. My biggest challenge hasn't been coming to terms with my occasional limitations; it's been coming to terms with the reality that, in the world of EDS, getting answers, particularly clear ones, hardly ever happens. Unfortunately, this was once again the case yesterday...
I was diagnosed with Phantosmia early in August 2023. Phantosmia is rare and can have serious underlying issues, one being stroke. I was put under stroke observation – given my history of two VADs (Vertebral Artery Dissections) without stroke. After returning from our holiday I began experiencing new symptoms. On Friday morning I visited my local surgery to consult with my GP. After assessing me, my GP referred me to the A&E stroke ward at our nearby hospital for emergency tests, ruling out a potential stroke. I was poked, probed and scanned. I think the only test I didn’t have was a mammogram 😜. I received excellent care. I did however find myself explaining to a junior doctor what POTS was, but the stroke specialist was truly remarkable and well-informed. It was incredibly refreshing to talk with someone who not only understood my condition but also genuinely cared. This was a change from the usual experience of being dismissed.
When I finally got a slot for my CTA scan, I hopped onto the examination bed, and the staff asked, "Have you had a pregnancy test?" I couldn't help but burst into hysterical laughter, only to quickly realise that they were completely serious. Despite all the tests I had undergone, I found myself surprisingly anxious about this particular one 🤪. Imagine that!
I'm back home now, having been discharged with all my scans and blood tests showing no abnormalities. I still have one MRI scheduled soon. This is truly excellent news and a tremendous relief but once again no answers. Over the years, I've come to accept that most of the time, I won't receive definitive answers. It's far from easy (an understatement), but it's the reality of living with an invisible illness without a cure. Just me, putting my trust in God and taking each day as it comes. Thank you for all the messages and love.
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*** EDS research is essential to help better understand and manage conditions. Of the different types of EDS, we still don’t know the gene or genes that cause the most common type. Why does EDS flare with hormones? Why do so many other conditions co-morbidly exist with EDS? We need answers to these questions and awareness is crucial. A recent survey found that the average length of time between the first symptoms and diagnosis for a patient with EDS is 19 years. From experience, there are limited resources and people with EDS are passed from clinician to clinician without an accurate diagnosis. Help us to bring change. Donate here.