Hypermobility & Episcleritis (13 year old)

[francohoops]

Our son (13), who is hypermobile, recently had a red left eye on-off for a 2-3 months. It came on usually when tired, using his phone for longer periods etc. We took him to the optician on Saturday who diagnosed episcleritis and said he’d refer him for blood tests etc.

I’m now really worried that this could be the sign of a more serious underlying condition. He’s very active. He did have a back issue for a while, where he needed to work on strengthening his core muscles, but that now seems ok and he’s back playing sport. The physio said it was hyper-mobility related.

Has anyone any experience of similar?
Thanks

I can tell you about the episcleritis but from an adult perspective. It looks far worse than it is. It is a self-limiting auto-immune condition which can be quite painful. It responds well to anti-inflammatories and steroids. Steroids are not great because over the long-term, it can damage the eye. Sometimes both eyes are affected at the same time, at other times, just the one eye. It can last up to two weeks or longer. I suffer from it so all the above is from first hand experience. I have seen several ophthalmic surgeons about it because when I first got it, it panicked me. It’s more painful than anything else, but it can be a miserable time when an episode kicks off.

Hope that helps.

I wanted to add that I was told it was more likely to show up when my immunity was low; so when I was very tired by work and picked up a cold/sore throat, I’d get an attack. In your son’s case, it tracks with the tiredness. Over use of the phone / TV doesn’t trigger it but it can make it a lot more painful if using devices during an episode / attack.

Yes this sounds very much like it might be due to hypermobile Ehlers-Danlos syndrome (hEDS). Is he tall with long limbs? Does he bruise easily?

The condition is on a huge spectrum, in terms of how disabling it is - for some people it's quite mild, for others it can cause a lot of pain over the years, and is associated with mental health difficulties. But either way it's not life threatening or life shortening. And it's only a relatively newly understood disease, so treatments and support are improving rapidly.

If it's not Ehlers-Danlos, the combination of joint hypermobility plus episcleritis does sound likely to be some kind of rheumatology condition, so I'd see a rheumatologist to find out if there is an underlying diagnosis (they would also be the one to diagnose Ehlers Danlos).

Might be worth seeing a private rheumatologist as a one-off appointment, just to get a diagnosis. Many will then switch him back onto NHS care after the initial appointment, but you can ask the secretary when you call to make the booking.

I’ve had episcleritis. I have MS and was told it’s not related, however it coincided with my first relapse in years. So I’m not sure. The hospital wasn’t sure if it was a stand alone condition or as a result of the MS treatment I had 10 years ago. Touch wood, it’s not reoccurred as yet.

I’m hyper mobile and I’ve had episcleritis three times, they tested me to see if I had rheumatoid arthritis as it can be linked to this. All of my episodes coincided with when I was ill with something else. I also have other autoimmune issues like coeliac disease. I was referred straight to the hospital each time as it’s classed as an emergency because it can be sight threatening.

episcleritis definitely isn't sight threatening - but scleritis is. Episcleritis isn't painful either - it's more of a dull ache.
I wonder if some of the other previous posters have also got confused.

It can sometimes be associated with inflammatory bowel disease and also things like ankylosing spondylitis - which can also cause lower back pain. But it can also be one of those things, which doesn't ever recur.