Our journey with JHS
An interesting journey that we have been travelling is JHS or Joint Hypermobility Syndrome. I guess for me the journey commenced back when I was about 2 years old when I began experience chronic unexplained pain in my knees. This continued for years along with fatigue issues. As a kid my parents were told that it was various things from growing pains, my bones growing too quickly for the connective tissues which resulted in knee surgery at the age of twelve (which was unsuccesful), to recurrent glandular and as an adult I was diagnosed with chronic fatigue syndrome. As I look back nobody really knew what was going on.
When my eldest daughter, Rapunzel was about 6 months old we were concerned that she was still not able to roll front to back and seemed to really struggle with even lifting her head off the ground. With a bit of physio she got there and learnt to sit but was always unsteady. When at 11 months she could not crawl or even get into a crawling position because she was so floppy our concerns grew (being an occupational therapist didn't help either!).
One day we were playing with some blocks and she was trying to get one that was out of reach. So instead of lying down to the side she leaned forward to lay down in between her legs (like a gymnast!) and then flicked her legs around so she was on her tummy. WOW, I have never seen a kid so flexible without training!
So off to the peaditrician we went for a check up. At first she was diagnosed with low muscle tone and delayed gross motor skills. She also had not develop some of her reflexes such as the parachute reflex or the one where you put your hands out to stop yourself from falling (a pretty important one to have!).
The next twelve months were an interesting journey (all at the same time as relocating for my husbands work). We started intensive early intervention (Physio and OT) and were sent for numerous blood test, MRIs and lumbar puncture to try and find out some answers. When all these came back clear and Ayisha had made such huge gains with early intervention the neurologist cleared her of any neurological issues like cerebral palsy or any metabolic disorders – which was a reflief for us! But still didn't explain why she still wasn't crawling at 18months.
A few months later at a review appointment the paedtrician was looking at her hypermobile joints and then assessed me…. hmm maybe something hereditry as I was also hypermobile ( I had never been assessed before). So off to the geneticist we went and within 15mins of being there he diagnosed both Ayisha and myself with Joint Hypermobility Syndrome – a connective tissue disorder that makes the ligaments in the body very loose and therefore the joints are hypermobile or move too far. This causes chronic joint pain, excessive fatigue and high risk of joint disolcations (fortunately we haven't had too many of those and those we have had have been minor!). For kids it also means gross motor delay, poor proceptive skills (awarenss of where your body is in space) and motor plannig issues. Which explains why Ayisha had only just learnt to crawl!
Since then our journey has included lots of early intervention, theratogs, walking frames, wheelchairs and more recently an interesting journey with therpists. All things I will share with you.
Our journey takes a new direction!
Right now our journey with JHS seems to have taken a bit of change in direction which is why I want to share it with you. This year we were relocated to Sydney from Wagga Wagga (large regional city in southern NSW, Australia) for my husbands work. But along with that came a huge set of issues which all resulted from the lack of awareness about Joint Hypermobility Syndrome (or Ehlers-Danlos Syndrome Hyerpmobility which is a very similar or sometimes considered the same disorder). That is why I have included it here. I want to raise awareness about JHS or EDS so that our kids can get the support and equipment they need; I want to provide parents, family members, teachers and even therapist a place they can find information and useful resources; and even help raise money for Connected Foundation – the Australian foundation helping raise money for research and treatment of people with connective tissue disorders.
So who knows where this journey will lead us. Only God knows and only time will tell.