Hypermobility syndrome, explaining the invisible illness. Little understood. Little talked about. Often belittled by the medical profession. Meet my children, Erin is six and has already been in theatre seven times. Chloe is sixteen numerous broken fingers, dislocated knuckles, whiplash injury and soft tissue damaged. Growing pains, tummy upsets, fatigue. Osgood Slaters disease and regular physio when she hurts. Dylan 12 diagnosed with Osgood Slatters and Severs disease. Hypermobility syndrome hurts despite it being an invisible illness. HMS is also known as elhers danlos syndrome hypermobility.
Hypermobility syndrome (elhers danlos syndrom hypermobility) is not rare but it’s implications are not often understood and explored. It it one of those invisible illnesses that affects suffers in different ways. Hypermobility – explaining the invisible illness
It does not help when on a This Morning there is a feature on sick notes and teachers making children do PE despite a note from home requesting the lesson is sat out. A worried mother rang in and explained how her child has hypermobility and aches daily, she explained that in damp weather the joints are effected and PE hurts. The ‘specialist’ a GP retorted that hypermobility is nothing to worry about. The mother made to sound neurotic and a worrier. The viewer’s left under the impression that elhers danlos syndrome hypermobility is nothing to worry about, nothing to be concerned by.
This does not help my girls. I could be that mother.
Hypermobility does hurt, hypermobility does matter.
My Erin, she hurts, her feet hurt, her ankles bend too much, her toes and foot bend more than they should. She wears orthotics that help her walk in a straight line. Her little fingers and wrists hurt when she grips a pen for too long. She falls off chairs in class because her core isn’t that stable. The right side of her body weaker than her left.
She has seen specialists and all agree she has hypermobility syndrome, that could be why she was born with DDH that could be why her hip sublaxed and she needed major surgery. Erin spent 24 weeks in a spica, cast from ankles to chest to repair her hip. A hip that dislocated as her joints are too lax. A socket that did not develop because her femur was not in situ. Belittling hypermobility or elhers danlos syndrome hypermobility is belittling what my then two year old went through.
She didn’t walk until she was 20 months.
My sixteen year old plays county and club hockey but she injures. She has broken fingers from catching a ball, she got whiplash from lifting weights where she over extended. She currently needs physio on her neck for chronic pain.
As a teenager I too had many of these problems and very few listened. There has been some progress at least there is a name for it now. The labels I was given were not nice and I was often dismissed. It made things worse for me.
Therefore when I hear doctors on a national TV programme dismiss hypermobility I despair. More awareness is needed. More empathy required. Hypermobility hurts. Hypermobility does matter, it matters a lot to me and my girls.
Pin for later: