Off topic. Another week another hospital visit

[Pink75928]

Evening guys. So I was at the hospital again today, this time for my 15 year old daughter. She’s been diagnosed with Ehlers-Danlos Syndrome. Who decided my family had to have all the illnesses? My other daughter has epilepsy. Hope you’re all well xx

[Mmrr]

I'm sorry to hear this Pink, it all seems so unfair and so much to deal with when you are not so well yourself.

I've only got a vague knowledge of Ehlers-Danlos Syndrome, I know it involves joint hypermobility, but much more too I expect ? Is your daughter very unwell ?

[Pink75928 in reply to Mmrr]

She’s ok actually. It can come with heart problems which thankfully she doesn’t appear to have. For her, it’s just hyper mobility, fragile skin and tummy problems. So fingers crossed physio helps her out. She’s a dancer, and we were worried the consultant would tell her to slow down with dancing but he said any physical activity that makes her stronger is good

[Knip in reply to Pink75928]

Pink, it's good to see that your daughter can continue to dance...that's the blessing in all of this isn't it! Hold on to that. I hope the Physio will be really beneficial for her. I have just found the following online... “Sarah Sutton glides across the floor as if dancing is a natural act for her. It is anything but. With extreme care, Sarah steps up on her toes to dance en pointe ballet being careful to keep her knees directly over her shoes. If not, her knees will bow to the back tearing her joints. Sarah, 16, has Ehlers-Danlos Syndrome making her hyper-mobile". Take care, x

[Pink75928 in reply to Knip]

This is lovely. I’m going to show my daughter. She has a show in a few weeks and I can’t wait to see her dance on a stage, finally! After nearly 2 years since she was last in a stage xx

[Knip in reply to Pink75928]

Wish her good luck from all of us, and if you get a chance take a snapshot of her on stage, or beforehand if that won't be practical. God Bless, x

[Pink75928 in reply to Knip]

I absolutely will do. She’s very much an extrovert so will be delighted that she’s getting good luck messages on here 😂

[Hidden]

Poo! Hope physio works x

[Pink75928 in reply to Hidden]

Thank you xx

[springcross]

I'm really sorry to hear that Pink, there always seems to be something else to have to worry about. I hope all will be well. 🤞

[Pink75928 in reply to springcross]

Thank you xx

[Oshgosh]

Life’s horrible sometimes .look after yourself xxx

[Neonkittie17]

So sorry to hear this and I hope your daughter will be alright. I’m glad she will be able to continue with her dancing 💗x

[happytulip]

Hi Pink. Sorry to hear your news.I have EDS type 3 with abdo problems too. If I can be of any help I will.

I hope she is home soon.

[Pink75928 in reply to happytulip]

Thank you so much. I still have a lot to learn about the condition. I think she is type one. The doctor said they no longer do genetics tests for it, and it’s very clear by her symptoms. She has a little bit of malabsorption so is very thin.

[Monkeysmum]

So sorry to read about your daughters diagnosis Pink, we’d transfer all their problems to us if we could wouldn’t we! Hope now she has been diagnosed she can access good treatment. Xx

[Pink75928]

Thank you all. You’re all so friendly and kind. I feel so grateful to have this forum. I’m going to try and navigate my way to some more information about this today, with a brutal MTX hangover! Xxx

[Plumcrumble]

Sending love and best wishes to your daughter 💐💕💕💕

[Boxerlady]

Sorry to hear that but it sounds like you and your daughters are a great team so I'm sure that you'll find a way to cope with all the challenges you're facing atm.

Remember that RA thrives on stress so try not to do too much research, especially on Methotrexate-hangover day! Google can be useful but it can also throw up a lot of rubbish so try to to stick to dependable sources 😉

[Pink75928 in reply to Boxerlady]

Good advice. Thank you. This is my first day since being on MTX that I have attempted to work with the hangover. Glad it have it to keep me distracted from googling!

[Boxerlady in reply to Pink75928]

I find that with Methotrexate it's a fine line between doing enough to keep my mind off the foggy head and realising that I'm not able to concentrate enough to do something properly! Recently I have found that doing something is better than just resting though.

[Flor1rence]

Hope the physio works Pink, sorry to hear of yet more health issues especially as you have alot to cope with already. I wish I had done some dancing, its lovely and good luck with the show. I'm named after a ballet dancer but didn't do any, love to watch it. (not Florence, that is my pet name on here)😂x