When one diagnosis just isn’t enough

Life can be a bit painful for my kids.  They have joint hypermobility syndrome and whilst many don’t ‘get it’ or just trivialise it – they have to live with it. Hypermobility syndrome is more than just being a bit bendy, a bit flexible.  It actually hurts and made my life pretty hell in my late teens too.

Hypermobility awareness

Thankfully for my children awareness has increased, not enough, but a little more.  It doesn’t help that it goes by different names too.  

What else can hypermobility be called?

It can be called Benign Hypermobility Joint Syndrome which is what Erin has it written on her medical notes as.  

It is also referred to as Hypermobility Syndrome and many believe it is the same as Elhers Danlos Hypermobility or Elhers Danlos Syndrome Type 3.  

I am not sure if Chloe has it written in her notes despite having regular physio and needing wrist splints during flare ups as a teen with hypermobility life isn’t always fun but she has coped.  

One soap that is raising awareness is Coronation street with the storyline of Izzie who has Elhers Danlos is real life and in the soap.  Her’s is at the severe end and not everyone ends up in a wheelchair but many can depending on where they are most affected.  It is good to see the storyline unfolding as many still underestimate the affects on HMS on the body.

Osgood schlatter treatment

Last month I took Dyl to the GP and he was diagnosed with osgood schlatter disease which despite it’s name isn’t as bad as it sounds although it is a painful condition.  He was given some exercises, told to rest for a bit and also referred to podiatry as he was complaining of foot pain and he walks with a slightly odd gait. It seems joints and laxity issues are affecting him.  It is a typical age for it to start as he is growing rapidly and affects those with flat feet.

The appointment came through quickly and once again I wondered when I ever had time to work in school as this appointment was on one of my old ‘working days’. We had our appointment with the same podiatrist Erin has and I truly rate him as an expert.  

He started off by checking Dylan’s mechanics, he pushed his feet around and watched how they moved, he then asked if Dyl had had any hip issues or been checked over for hip problems.  The podiatrist knows Erin and I mentioned how Dyl had never been checked bar the baby checks.  I can’t deny that I felt a little sick at him checking Dyl’s hips.  I know Dyl has never limped like Erin but just the thought of a hip issue is enough to make me want to vomit! Thankfully he was happy that Dyl’s legs are the same length and he has a symmetrical movement in his mobility.  He then asked Dyl to walk up and down the corridor and agreed that Dyl has very flat feet (another symptom of hypermobility syndrome).

Severs Disease treatment

He then agreed that Dyl has Osgood Schlatters in his knee and also diagnosed Severs Disease in both his ankles which explains the foot and heel pain he has been experiencing.  We now have more exercises to do – he apparently has really tight hamstrings which probably isn’t helping either, we are likely to be having physio after a period of rest. The podiatrist also diagnosed that Dyl’s foot is bent, and causes a pain known as metatarsalgia interestingly Erin has this too and it is linked with DDH. The more I find out the more I am seeing comparisons and this is linked to the hypermobility and how they were molded whilst in utero.

We are back in six weeks when it will be decided if orthotics are required.  So along with his weird eye stuff and hayfever he now has a few more labels to add to his collection.

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