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I’d always been hypermobile as a child and used it to my advantage as a ballet dancer, but I was forever in pain and getting injured. We was always told by doctors that it was just growing pains and “double jointedness” is common in children.
I then moved away and started university. Whilst I was at uni studying nursing, my health worsened with another illness. It took me a while to get a specialist in this illness as it’s rare, and there aren’t that many specialists around here in the UK. When I first met him he did a physical exam and noticed how hypermobile I was, referring me to a rheumatology colleague at a different hospital who specialised in hypermobilty. She agreed I had some form of hypermobilty syndrome. She did suspect vEDS as I had some of the symptoms and facial features, so I was sent for genetic testing. Thankfully it came back clear. I returned to the rheumatologist; by this point the new 2017 classification had just come in. I met many of the criteria for hEDS, but not all, so I was given the diagnosis of HSD.
I have many HSD related complications – dysautonomia, POTS, intestinal dsymotility, fragile skin, poor vein access, chronic pain and fatigue, multiple dislocations/subluxations a week, sometimes even in a day – the list goes on. I’m under a lot of secondary specialists to deal with the complications of my HSD. I need to use a wheelchair/crutches and I wear braces to support my joints as much as possible.
The message I want to give to everyone is that HSD is different, not less, and it should be taken with as much seriousness as EDS. It is just as disabling.Tags: Coping, Diagnosis Journey, dislocations, Dysautonomia, HSD, hypermobility, hypermobility spectrum disorder, POTS
Categorized in: Stories