Just joined the site a few days ago and left a post in the Introduction thread. I was just about to ask if there was anyone from the U.K. on and then i scrolled down and here you are!
Can I ask, does anyone know of any uvitis support group that meets or chats on the internet? This site is a fantastic support but I'd also appreciate chatting to people.
I'm a patient of Mr. Ayliffe. Are there any of his patients here.
Good to see you here! I've been a patient of Mr Ayliffe's for just over three months now, once I gave up on my local hospital's steroid drop approach and (almost) begged for a referral...
I'm not aware of any other support groups in the UK, but this website has been a huge help to me! I found it's just made so much difference being in contact with others who can understand many of the symptoms and emotions that we experience. Hope you find the same too!
Re: Uk Newbie
Hi Ro,
I echoe Anke's words! Reading of the IMT you're getting, I guessed you were one of Mr Ayliffe's patients! (I'm being treated in Birmingham).
There are a few of us who use this site and have got a lot of help from it. Like Anke, I'm not aware of a UK group which actually meets for mutual support, but Phil Hibbert runs a UK uveitis group which supplies newsletters and information. He acts as a spokesman for patients and meets with the consultants who treat us. If you google his name, you'll see what he does.
Just like Anke, I've made some good friends here who let me weep over them when times are tough. It's been a godsend talking to others who understand, rather than baffled friends.
UK Patient info
Hi,
Thanks Liz for the help getting to this thread.
The Uveitis Information Group, aims to produce info and updates via website / phone / post.
There are no active chat areas based in the UK and currently haven't got time to set one up on our site. I would support the UK area on this site as it works well and hopefully easy enough to find.
I am very interested to hear from people (especially 'patient experiences' written down to pass on to patients and specialists) and I can help in deciding on where the best treatments centres are. I would love to help arrange more public meetings but need more help locally to do this. Please get in touch if you are interested. also to find out what we are doing in the UK
Our next update news / info will be published early in the New Year (is overdue) If you want to receive an email reminder for this or receive postal version see our website and contact me:
www.uveitis.net
info@uveitis.net
Happy New Year to all
Phil Hibbert
Thanks for your kind responses! D'ya know, since joining this site, I've been like the cat who got the cream (much to my dogs disgust!! ).
As you said, it's great to be among friends who know what you're going through! Honestly, I have had some amazing suggestions from friends like, "oh, all you need is to get out in the fresh air...."(when I can barely make it to the kitchen!!!!) and, " Could your eye conditon be due to your eyelashes rubbing on your glasses...?!), who do they think I am, Lily Savage!!! and the best, "I don't have time to be ill....", implying I do!!!! I know they're only trying to be helpful but you gotta laugh
Anway, I'm going to wear a name badge to Mr.As clinic so if you see me, come say Hello. I often hang around for coffee as I travel to Croydon from Bucks.
Well, off to get ready for New Year celebrations as being Scottish, it's a big deal
Wishing you all a New Year in which good health pevails.
Ro
ps, had to redo this post as lost the first one so if it shows up sorry for boring you twice! lol
Re: UK Patient info
Love the humour, Ro - the Lily Savage has me laughing.
My biggest bugbear is taxi drivers who can't read well - combine that with me not seeing well and the firework display is sometimes spectacular. The best was the one who got lost and decided to 'Let me out.' We were half way across a field! For once, I was speechless. Just for a minute.
Re: UK Patient info
Oh Maxine, it's good to know others have barmy experiences with people! hee,hee
Hey, another one is, "but you don't look ill?!" sounding a cross between disappointed and suspicious!! Honestly, I've thought about getting a job lot of talc and black eyeliner to make myself look pale with dark circles!! But even better
than that is when, on the days I do look absolutely shattered, they seem a bit relieved coz they kno I haven't lied! ha,ha. What are some people like? As I say you've got to laugh. At least it lifts my spirits.
Re: UK Patient info
'Why don't you take antibiotics - that should help your eye?' Many people also don't get that when you have a massively dilated pupil, it's not so easy to read...
Now that I'm on IMT, the eye is ok for the moment (I'm also still on the odd steroid drop) - but unlike Maxine, I do feel the methotrexate for a few days each week - which can also lead into some interesting conversations re length of treatment etc... I also like the 'have you asked for a second opinion - there must be something they can do to make it go away'
I find it's either laugh or cry. I tend to alternate quite a lot still, but definitely do prefer the laughter!!
Re: UK Patient info
Ha,ha....Anke, I haven't heard the anti biotic one yet!
I totally understand your laugh/cry thing when this situation with "friends" happens! My pattern goes something like this....friend makes unhelpful comment then leaves, I get all mad, pick up phone, call sister, rant and rave for 20 mins, stew on it for a week then begin to see funny side and start laughing. Hey, it works for me!
Listen, I have an idea. I know it sounds mad but....... why don't we submit all the "interesting" comments we get to make a sort of book that we could pass onto recently diagnosed people to 1. forewarn them so they don't feel so knocked when they receive comments and 2. to show them that they're not alone with this. It could also help us as when comments are made we can see them as research for the book and rather than an unhelpful comment.
Hey, I said it was mad but the more we turn a negative into a positive, the better we'll all feel
Just saw your string of posts and just wanted to tell you I see Mr A as well. I have been going to Croydon since last July 2006, so slightly over a year, having been diagnosed with Birdshot (and seen elsewhere) in 2004.
I think my next appointment is 6th Feb. It would be funny if you turn out to be there then. Understand what you are experiencing about appointments. BE PERSISTENT!
Great to hear from you! I'm booked into the wrong clinic on 1 Feb so I'd put money on being there on the 6th..hee,hee. When I eventually get through I'm going to insist on being seen soon as my appointment was originay for Dec so if it's the 6th I'll let you know.
Re: Your post
Oops got it wrong - nothing like trusting the memory... Feb Monday 4th is the date. I think he does Mon and Frid. TIP speak to his secretary if you have no luck with appointments. I don't know if it is same girl, but it might help. Cheers Annie
Re: Your post
Mr A mentioned to me once that his secretary doesn't always answer the phone... so you may want to let it ring slightly longer than usual to get through
I'll be at the uveitis clinic Mon 28 Jan if anyone else is around then!
Re: Your post
Horay, got through!! It's official....I have to attend the wrong clinic on Fri 1 Feb. I have to try again to contact Beverely, (Mr As secretary), 2 weeks prior to the apointment to ensure I see him. Wish me luck!
Prior to speaking to Beverley, I spoke to girl in the eye clinic and only about 2 mins into the conversation I almost asked her if she'd ever done a, "How To Speak to Another Human Being" course but i thought it would kind of go over her head!! What do you think?!
Re: Your post
Classic - you had me laughing out loud there!!! Sometimes one does wonder though....!
I'm slightly confused what Beverly will try to achieve 2 weeks prior to the appointment, but at least you know that Mr A will be there that day which is always a good start! I generally remind the nurse who I wish to see and watch like a hawk to make sure my file goes to the right door - that seemed to work, but I've also only been to Mayday once so far...
Don't worry, I am sure you will see Mr A, he has also seen me, even if one of his colleagues takes a look first. He seems to be very good at making sure the clinic runs as smoothly as possible, he sees the patients he feels he needs to see and is always very apologetic if it is a long wait.
All the best for your appointments - shame theey are all on different days!
Re: Hospital clinic
It would have been great if we had all been there on the same day. I've always seen Mr.A on my appts so I'm sure I will this time. Naomi Campbell has nothing on me when it comes to tantrums...even if they suggest I see someone else,
mobile phones will fly...hee,hee!!!!
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