Kids, Mothers and Ehlers Danlos Awareness Month


It's the last day of Ehlers Danlos Awareness Month and, of course, I've left it to the last day to write anything about it. It's not that I haven't done anything, just that the activities I've taken part in, on top of everything else such as SNJ stuff and my regular failure at doing family things, have used up my energy.

I've also been having hydrotherapy as part of my treatment and youngest, who also has EDS, is supposed to be having some too, when their Beta Blockers have got their dizziness, caused by Orthostatic Tachycardia, under control. Youngest is having a tough time coping, only usually managing four days out of five a week at school, but their Year 10 teachers have been great and regularly provide missed work to catch up with, vital for a GCSE student.

We are still waiting to hear about a referral to the paediatric rehab at Stanmore's Royal National Orthopaedic Hospital. My turn in the adult section is coming up rapidly, though the first date I've been sent is in the middle of our family holiday in Italy (yes, I did say when that would be!)

The hydrotherapy is really useful at strength building, although it has increased my pain from under-used muscles. However, I would definitely recommend you try it for your child, or yourself if you need it. It doesn't suit everyone though, and it was the best-kept secret at my GP who didn't even know the service was available until I told her about it. I know Youngest will benefit, if only I can get them to be allowed into the pool! To this end, they have physio exercises and we are just about to sign them up to the gym - and me too now I feel strong enough to try the hydro exercises in a regular pool by myself.

Swimming is out, as my hip joints are falling to bits but at least I can be in the pool with youngest as they swim to strengthen their core. Son1 finishes his GCSEs on Friday, a double celebration as it's my birthday too! So we face a loooong summer before Sixth Form, making sure he doesn't vegetate in front of FIFA or watching Yogzcast and the gym is the perfect solution.

Where does the time go?

It's hard to believe those years have gone by, but that's for another post. We've also discovered, coincidentally during EDS Awareness Month that Son1 is also most likely to have EDS. Take a look at this bendy thumb, coupled with easy and persistent sports injuries, back pain, pains that come and go and many similar symptoms that I had at a similar age.

Bendy boy
Son1 is bendy too!

His saving grace is that he loves sport and so he is strong, but youngest's specialist has advised nonetheless to make sure he also gets some physio. Swimming is also a good idea for him, too! We'll be facing the double whammy in the autumn of trying to get him a new Education, Health and Care Plan as his chosen destination is a Sixth Form College and previously this meant his statement would expire. He will also have to be assessed for Personal Independence Payment. After a visit from a DWP officer last year, it was decided that his Disability Living Allowance should just be extended for a year as the government realised, after pressure from disability groups, that using 16-year-olds as guinea pigs for their new system was somewhat barking.

EDS Awareness event

In the middle of EDS Awareness Month, I attended an awareness event organised by the EDS UK charity for whom I volunteer. It was really interesting with top names in the field speaking such as Professor Rodney Grahame, who diagnosed both Youngest and myself, and Professor Chris Mathias, one of the few autonomic specialists in the world.

Tania at EDS awareness event
Meeting other EDS patients before the seminars

The presentations will be soon available for EDS UK members via their site, so if you have the condition, it would be well worth the small cost of joining to access them. There is much to learn about EDS, its genetics and how to improve the lives of patients who range in severity, largely depending on how many of the different aspects of this insidious condition they are affected by.

There is a new documentary out about it and you can see the teaser here.

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Tania Tirraoro

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