Ehlers Danlos Syndrome #enoughisenough


May is Ehlers Danlos Syndrome month. I’d never heard of Ehlers Danlos Syndrome (EDS), until my children and husband were diagnosed with it.

Not just being hypermobile… approx. 40% of people are hypermobile. Only around 1% of those have EDS. EDS hypermobility type, HEDS, Hypermobility Syndrome… hypermobility is a bit of a red herring, because the bendiness isn’t the bit that causes the most problems. In fact, my husband leaning out the window to partially dislocate his shoulder so he could reattach our christmas lights to the guttering was quite useful!

Not so useful when he partially dislocated it twenty years later and caused the muscle to go into spasm though… Muscles and tendons don’t like being messed with. Add in a tremor, seizures, tachycardia, dizziness, collapsing, headaches, joint pain, nerve pain, muscle pain, dislocations, partial dislocations, chronic fatigue… and just getting out of bed starts to be an issue. Fortunately being stubborn and the attitude to get on with it regardless tends to also be a common ‘symptom’!

We’ve dealt with misdiagnoses- having a ‘rare’ condition tends to bring problems, it seems. You learn to advocate for yourself, for proper treatment, for adaptations and the support you’re entitled to.

EDS UK are campaigning for better diagnosis and care for people with EDS in the UK. Please sign their petition.

Now my husband is on the right medication and has the right equipment to help him, it’s made all the difference. It’s a balancing act, and little things other people take for granted we have to plan out.

I have arthritis and stiff joints, so I’m the opposite to my bendy family! Just means we have a lot of wheat bags- and no one can open lids or jars in our house!

#enoughisenough #edsuk #ehlersdanlosawareness


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