All creatures great and small
I am forty-eight years old and was officially diagnosed with hypermobile EDS just a few months ago, along with a host of comorbidities. I am a veterinary surgeon and single mum to three amazing children.
I have had symptoms of hEDS from at least the age of seven, including severe sacroiliac and back pain, almost weekly sprained ankles, constant severe neck pain and regular headaches and migraines. In addition, there have always been symptoms such as dizziness and a racing heart. As a young adult, I saw multiple consultants, physios, attended pain clinics, had radiographs and scans. Whenever an area of my body was looked at, for example my back or my jaw, it was always remarked upon that I had severe degenerative change at a very young age. However, nobody ever looked at my body as a whole and the dots were never connected. I was diagnosed with fibromyalgia and told I would have to just get on with it.
It was when I was yet again referred to a pain clinic at the age of 41, and saw a specialist GP, that the possibility of EDS was first mentioned to me. I will be forever grateful to that GP, but unfortunately, he was unable to help me further and subsequent consultants dismissed the idea.
In 2021, after contracting Covid 19, all of my symptoms worsened and I developed a lot of novel ones as well, just for fun! These included gastrointestinal problems, allergies, cardiovascular symptoms, cognitive issues and extreme fatigue. I ended up having to take a year off work in 2024/2025, during which time I was forced to research and diagnose my own conditions and then find the correct consultants privately to confirm the diagnoses. These are hEDS, autonomic dysfunction, mast cell activation syndrome (MCAS), histamine intolerance (HIT), post exertion malaise and long COVID. I am still awaiting the official diagnosis of postural orthostatic tachycardia syndrome (POTS), as I’ve been told I can’t have the test done locally. I have also been diagnosed with Hashimoto’s disease and a frozen shoulder, both of which are autoimmune conditions.
Having returned to work in April 2025, to the two jobs I have done for many years and absolutely love, by June I had to make the heartbreaking decision to give one of them up and only work two days per week, due to my symptoms.
My work has made adjustments for me, so that I now only consult, with no operating or performing radiography or dentals, due to the pain they cause me and also a weakness in my hands and wrists. I work out of a small branch surgery, with just one other member of staff, which means I can be in control of smells, avoid chemicals etc, all of which help reduce the symptoms of MCAS and HIT. I have been allowed to fit in more regular breaks in my day, to ensure I make time to drink, take electrolytes, have small snacks and take a breather. However, the unpredictable nature of veterinary work can sometimes make this difficult. My employer has purchased a saddle stool for me, which although not very lady-like, has been a great help! Bending down and sometimes having to lift animals is becoming increasingly difficult, due to physical pain and stiffness, as well as the dizziness and palpitations from POTS/autonomic dysfunction. Another thing I struggle with is tinnitus when I am trying to listen to hearts!
One of the main reasons I fought so hard for diagnoses for myself is that my children also exhibit symptoms of hEDS and autonomic dysfunction. My daughter, who is now fifteen, has been very poorly since she was ten years old. She has now been diagnosed with hEDS and POTS, but her diagnoses came after years of battling and being told such things as EDS does not exist or that it only causes hypermobility. She has had years of severe illness which has seen her often confined to her bed and caused her to miss a lot of school. During the five long years of trying to get her diagnosed and help her, I felt completely helpless, like every appointment we had was futile, and I did not know where to turn.
It was when I found EDS UK and started attending support group meetings that I discovered we were not alone and found out which consultants we could go to for help.
It is for this reason that I would like to be able to do anything I can to help EDS UK, so that other sufferers and their families feel they have the support and guidance they need and to help raise awareness of EDS, so that nobody else has to wait forty years for a diagnosis.