Carers UK Forum

Hello

I'm Amy, and I'm writing this with my rather grumpy 3 month old son on my lap so it may be brief! I'm on maternity leave but have decided to leave to care full time for my 17 yr old daughter who has ehlers danlos syndrome. She has had to leave her college course due to ill health and is taking a year out to 'get better' - at least to the point where her condition no longer overwhelms her. It has been a bit of a slow bombshell for us, but I actually feel relieved and strangely positive now the decision has been taken.

Amy

Hi AmyB and welcome to the forum, will be lots more to welcome you along soon.

Hi and a warm welcome from me.

Welcome - the people around here are great and have been a great help to me since I joined.

Love
Linda

Hello Amy and welcome

Hi Amy and welcome, you have your hands full!

I belive the young girl on Coronation Street has the same syndrome as your daughter

Welcome to the Forum, Amy and pleased to see you here. Ehlers Danlos - my goodness - it was suggested many, many years ago that I may have it. I think it had only just come on the 'scene' so to speak! Luckily I was nowhere near having it, but it's certainly not a good thing to suffer from!
Well done you for making the decision of caring full time.....I look forward to hearing more from you on the boards x

welcome aboard Amy

x x

Thank you for all your welcome messages.

Yes Ehlers-Danlos syndrome is quite rare (one in 5,000 approx so maybe not as rare as you might think). I wasn't sure how much to put on here about the condition and how it affects Caitlin, but here is the short version!

Basically EDS sufferers have defective collagen which causes unstable joints and extremely stretchy but delicate skin. There are lots of other symptoms - chronic pain and fatigue being the most devastating. She also dislocates many many times every day which sounds dramatic, but we are used to it!

Only a few years ago she was extremely active - taking part in dance shows and gymnastics competitions. About a year ago she started using a wheelchair outdoors. At the moment a series of setbacks have meant she can't get around indoors without help. She also has epilepsy which is not severe but seizures are regular enough to cause trouble, as she is out of it for the next few days which means she doesnt move around, which makes the chronic pain worse. I would be very interested in hearing from anyone who cares for someone with chronic pain/fatigue - what helps, what doesn't...

Grumpy baby Leo is now fine thank you! He is teething and makes sure everyone knows about it! He has been wonderful therapy for his big sister so we don't really mind.

I also have a 13 yr old son and one of my concerns is that he gets a bit left out with his sister needing so much help and his brother still so little. Not enough of me to go round sometimes! Am sure that is a very common complaint...

Yikes - I didn't mean this post to be so long. I could go on for hours, I really could.

Amy

Amy we all go on for hours here, it keeps us sane!