Birdshot Uveitis Society

I’m new to BUS

Hello all

I’m new to this forum and don’t have Birdshot, rather I have Still’s – aka juvenile rheumatoid arthritis + uveitis. But I am very relieved to find this forum, and will post more elsewhere in more detail if anyone is interested, as I am happy to share my experience with long-term use of oral prednisolone. › Continue reading

Steroid induced hump

Here is a question that a new member Vicky asked us to pose to see if anyone has any useful advice for her.  This is what she says:-

“Do any of you suffer from a hump?

Is there anything I can do to help with this?

To anyone else I guess this would sound ridiculous – but I’m hoping you know what I mean.

I find it quite distressing that my face has changed shape and that I now have a hump on the back of my neck, I understand that this is a side effect of the steroid usage but I was wondering if there were any members who have the same thing and have any tips for helping with this?”

Both Rea and I see chiropractors in our efforts to stay straight, improve our posture and reduce aches and pains that these drugs seem to inflict upon us, but we’d be interested to know if members know of other things that can help alleviate this particular problem.

Thanks

Birdshot and Complementary Therapies

When faced with the news that you have been diagnosed with not only a rare eye disease but one where the prognosis is not good for the future, it is easy to see how you can feel as if your world has been turned upside down.   In some ways it can be looked upon as losing control of what is going on in it.

After being given details of the various medications (and their side effects) which may or may not work, it is almost certain that your emotions and thoughts are going to change – positive one minute and negative the next.  This in turn will have an affect on the physical body especially if one begins to feel helpless in this situation. › Continue reading

Help needed with invitreal injections!

Dave, a registered member of BUS has recently written  to us asking for our members help.   He wants to hear from people who have had experience of invitreal steroid injections as the current steroid treatment he is on isn’t dealing with his inflammation.

Can anyone give him guidance on what to expect and what their experience was of this procedure?

We are happy for you to post comments below or if you want to get in touch with him via birdshot@live.co.uk we will be happy to pass on your experiences to him if you don’t want to do this publicly via the comments section of the website.

Hope someone is able to provide him with info about their first hand experiences of this.

Thanks

Annie and Rea

Registration for Birdshot Patient Day opens

Saturday 11th September 2010

Doors open at 10.00 for coffee and registration and the conference ends at 16.45 – detailed programme to follow but the day will bring patients and professionals together to network, learn from each other, hear about the latest treatments, build a Birdshot community, lobby for better treatment and design a research programme for the future.

Presentations about Birdshot Chorioretinopathy and future treatments by leading consultants, inspirational speaker, Mike Brace of Vision 2020 (UK) ; an introduction to a possible model that could be used to improve treatment of Birdshot through the UK – Phil Hibbert (UIG); Rea Mattocks and Annie Folkard explaining how the Birdshot Uveitis Society came about and what they’d like to achieve from Birdshot Patient Days.

• There will be up-to-date news and information on new treatments
• Patient and consultants stories about treating birdshot
• Separate breakout groups
• A question and answer session

The conference, including lunch, is free,  as we have managed to obtain sponsorship but we do require a £20 refundable registration deposit. This can paid on line here (debit and credit card & PayPal).  We plan to have an informal social get-together afterwards, details to follow and these will depend on numbers interested.  Please contact us for details if you would like to join us for this  get together as well. ( birdshot@live.co.uk)  You can also apply for tickets by post. Cheques should be made payable to: Uveitis Information Group. You can download the form Patient-day-flyer , fill it in and send it to:

BUS PO Box 64996, London SW20 2BL

Please noted: if you are unemployed we will waive the deposit as we do not want people to be prevented from coming due to financial constraint.

Coming out at work

This post has been written by Adrian,  a member of the Birdshot Uveitis Society.

Dear All,

I thought I’d write a post about the Disability Discrimination Act 1995 (DDA),  sharing  my own experience at work.

To gain protection under the DDA you must normally have a disability.  It is for you to provide the evidence that establishes that you have a disability.

The effect of a disability is not always obvious in the workplace. There are a number of conditions that can amount to a disability but aren’t always recognised, such as fibromyalgia, depression, dyslexia, etc.

Someone is defined as having a disability (for the purposes of the DDA) if they have “a physical or mental impairment which has a substantial and long term adverse effect on her/his ability to carry out normal day-to-day activities.” › Continue reading

Battle to find Cellcept

Rea has just had another battle to get hold of cellcept. Usual story – all supplies used up. She finally got it from her very local, small pharmacist who is now trying to find further stocks for her and one other patient they have on cellcept. Rea is not alone. Annie’s pharmacist has experienced a recurrent problem getting hold of the pills, but he has, up to now, never let her down.

The difficulty seems to be that wholesalers use up their quota of cellcept quite quickly. Smaller pharmacists seem, in our experience, much more willing to order direct from Roche (the manufacturer of Cellcept), if the wholesalers have used up their supplies. Smaller pharmacists are, in our opinion, also able to build up a relationship with their customers and understand their illness, and the complications inherent in each type of medication their customers are using. As Rea said: ‘My local pharmacist spends a lot of time with me, working out when I am next likely to need medication, and trying to ensure that the medication will be readily available’.

One person we know was told by the “large chemist”, to just ask your GP to prescribe a different immuno-suppressant!

Annie always tries to make sure she has at least two weeks of pills left when she requests her repeat prescription to allow her pharmacist enough time to hunt down a supply.

Do others encounter this difficulty? Perhaps we need to draw the problem to the attention of Roche. What do you think?

Birdshot logo

If others have skills that they’d like to offer BUS, we’d be delighted to hear about them! Please do get in touch via birdshot@live.co.uk.

Happy New Year to everyone who has registered on the birdshot website and thanks so much for all the support and the enthusiastic feedback that we are getting.

Cheap Glasses

I am not at all  sure we should be advertising supermarkets like Asda particularly as they will help put high street optometrists out of business but I recently read about  this price war  they started .  Could be useful if, because of your eye problems, you are going through a phase of having to change your glasses frequently, or if like me you have a habit of losing glasses.
The newspaper reported that the supermarket giant Asda has started a price war with high street opticians by launching an ‘all-round’ price for spectacles, regardless of the complexity of the prescription. They will cost £50 for standard frames and £70 for designer frames.

Members Posts

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